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.
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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).
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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).
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11 Religion factors into narratives of illness often less as a means of finding succor than as a system that punishes and rewards, with disease and good health, respectively.
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12 See Obregón (2003) for more on leprosy in Latin America, especially Colombia. 13 Scholarship on disease and colonial expansion is vast. See, for instance, Alan Bewell’s Romanticism and Colonial Disease (1999), which focuses on the British response to colo- nial disease by medical and literary writers. 14 Isolation of leprosy patients was accepted practice in the United States beginning in the 1840s, and from the 1890s to the 1960s, patients diagnosed with leprosy in the continental United States were quarantined at the leprosarium in Carville, Louisiana, which did not close its doors until 1999. Leprosy was endemic in Louisiana in the 1800s (Gaudet 2004: 3–4). Leprosaria in North America date to the early 1500s; Hernán Cortés (1485–1547) es- tablished the first one in Tlaxplana on his estate near Mexico City in 1526–28 (Byrne 2013: 216). Leprosy similarly was introduced into South America in the sixteenth century. Paolo Zappa’s (1899–1957) Fra i lebbrosi (lit. Among the Lepers; trans. Unclean! Unclean!, 1945) describes conditions for leprosy patients in Brazil and elsewhere in the first half of the twentieth century. 15 By the end of the nineteenth century, incidents of leprosy had become particularly no- ticeable in India, Southeast Asia, and parts of Africa, Latin America, and Norway. See, for instance, Edmond’s reproduction of an 1891 map titled “Map Showing Approximately the
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2 Imperialism, Segregation, Hawai‘i, Nigeria
Mandatory segregation of leprosy patients came earlier to Hawai‘i than to most other colonial sites, given its reputation as the imperial world’s “leprosy laboratory” (Edmond 2006: 91). Leprosy generally is believed to have been among the many diseases brought to the Hawaiian islands in the eighteenth and early nineteenth centuries, either by foreign visitors or by Hawaiian chiefs who went on tours abroad (Tayman 2006: 20). By the mid-nineteenth century, when leprosy began causing significant concern in Hawai‘i, diseases from abroad (Haole diseases) such as syphilis and gonorrhea, cholera, tuberculosis, and mumps already had reduced the Native Hawaiian population from about 700,000 in 1778 (the arrival of British explorer Captain James Cook) to un- der 100,000.16 The 1865 “Act to Prevent the Spread of Leprosy,” encouraged by American and European advisers to the Hawaiian king Kamehameha v
Present Distribution of Leprosy in the World” (2006: 104–106). Hansen campaigned inter- nationally for segregating leprosy patients (Eunjung Kim 2017: 171). Compulsory segregation was not as prevalent in Africa, where colonial authorities generally lacked the resources to enforce such policies, or in India, where the scale of the problem rendered such policies meaningless (ibid.: 143). People with leprosy appear in such Indian fiction as Mulk Raj Anand’s (1905–2004) Untouchable (1935), where the pro- tagonist Bakha encounters a “black leper” who “sat swathed in tattered garments, expos- ing his raw wounds to the sun and the flies by the wayside, his crumpled hand lifted in beggary, and on his lips the prayer ‘Baba pesa de’ [Oh, man, give me a pice].” Rather than feel sympathy for this man, whose circumstances are even more dire than his own, Bakha instead is repulsed, and feels “a queer sadistic delight staring at the beggars moaning for alms, but not receiving any. They seemed to him despicable” (1940: 134). A second example from India is Dhanpat Rai Srivastava’s “Premchand” (प्रेमचंद / , 1881–1936) Hindi-language Godān (गोदान, Gift of a Cow, 1936), where Punni, furious at Hira, declares “May they carry away your corpse! May you get cholera! May Kali devour you with plague! May you suffer from the flu! May God strike you with leprosy! May your hands and feet rot and fall off!” Hira is not too concerned with cholera and plague, reason- ing that the fever strikes and you quickly pass away. Leprosy is another matter entirely: “But leprosy! That horrible death and that even more horrible life! Blood boiling, he jumped up, gnashing his teeth, and pounced on Puniya” (1968: 46). For Hira, death is far preferable to a life with leprosy. See also Edmond for a comparison of leprosy and empire in Hawai‘i, Robben Island (South Africa), Australia, and New Zealand (2006: 143–177). Anderson discusses the Cu- lion (Philippines) “leper colony,” which he describes as “an exemplary combination of army camp, laboratory, and small American town and a site for the biological and civic transformation of those considered most unclean and least socialized” (2006: 9). Signifi- cantly, “exile to Culion was represented not as the deprivation of liberty but as its cre- ation” (178). 16 Native Hawaiians had no resistance to these diseases.
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(1830–1872; Lot Kapuāiwa) and repealed only in 1969, gave the Hawai‘i Board of Health the authority to isolate and confine anyone diagnosed with the disease. And it took advantage of this authority, banishing people with leprosy to Kala- wao and then Kalaupapa, on the Kalaupapa peninsula of the remote northern shore of Moloka‘i. Until the 1940s, all people in Hawai‘i diagnosed with leprosy were sent to leprosaria on Kalaupapa (Mueggler 2011: 27). Conditions were bru- tal there, with many living in extreme poverty and starvation not unknown. Residents were also subjected to medical experiments (ibid.). Ninety percent of Hawai‘i’s leprosy patients were Kānaka Maoli (Native Hawaiians, descen- dants of the Polynesians), but Chinese also were quarantined, as were citizens of the United States, Japan, and multiple European countries. In the words of John Tayman, this was “the longest and deadliest instance of medical segrega- tion in American history, and perhaps the most misguided” (2006: 1–2).17 Records show that for the most part, unlike many societies, the Kānaka Maoli did not particularly fear the disease of leprosy itself. They had much greater fear of the public health officials who determined their fate and the non-Hawaiian community that influenced the Board of Health and the Hawai- ian monarchs (Inglis 2013). European and American outsiders believed the dis- ease a “just punishment for a corrupt and diseased society” and transformed the “normal colonized” into “dehumanized leper[s],” doubly colonizing them. Indeed, added to conventional Western leprosy stigmas were foreign percep- tions that Hawaiians were immoral, lascivious, and uncivilized (ibid.: 35, 41–42, 81). The prevalence of the disease in Hawai‘i was also blamed in part on China, which had a long history of leprosy and, because of the thousands of inden- tured laborers streaming out of the country in the mid-nineteenth century, was branded the world’s principal exporter of the disease, especially to Austra- lia, Hawai‘i, and the continental United States.18 Both at home and abroad the
17 Hawai‘i was not annexed by the United States until 1898 and did not become a state until 1959. 18 In China stigmatization of leprosy was, as Leung has described, “a mixture of religious, popular, legal, and medical interpretations formulated during a very long historical peri- od. The negative image of the sufferer of a fatal, contagious, and polluting disease was further enforced and stereotyped in the late imperial and modern periods.” Ancient and medieval Chinese, like their Japanese and Western counterparts, associated leprosy with retribution and the violation of taboos. Chinese began constructing asylums to accom- modate (segregate) those with the disease as early as the sixteenth century; leprosy was the only chronic disease in post-1700 China that necessitated institutional isolation. By the late nineteenth century, many Chinese elites imagined a system where “all lepers would be interned and disciplined systematically, treated medically, and allowed to live and die inside, leaving public space free of their loathsome sight, and above all, of further contamination.” Chinese supported the efforts of the Protestant international organiza- tion Mission to Lepers (est. 1874), which called for “a growing world movement for the
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Chinese leprosy patient came to personify the “lack of hygiene, morality, pub- lic tidiness, and … the inferiority of the Chinese race and nation” (Leung 2009: 6–7).19 Although Hawai‘i’s best known leprosy advocate and most celebrated pa- tient was the Belgian Roman Catholic missionary Father Damien de Veuster (1840–1889), in fact European missionaries played a much larger role in leprosy
segregation and care of the approximately three million lepers scattered throughout the world” and worked with governments “to secure ultimate world-wide segregation of lep- ers.” Yet Chinese activists soon became frustrated, believing there was too much emphasis on Christianity and too little attention to the strict segregation of leprosy patients. Not surprisingly, as Leung describes, “Compulsory segregation remained at the foundation of the national policy of the much stronger central government after 1949” (2009: 5–6, 12, 38, 85, 160–164, 176). About 1600 Chinese, primarily from rural areas in the nation’s southwest, are diagnosed with leprosy every year. Moreover, most of the twenty thousand people who live in one of China’s more than six hundred leprosaria have little interest in reinte- grating into society, knowing that they would be shunned if they returned home (Stone 2010: 939). 19 In late nineteenth- and early twentieth-century Hawai‘i, leprosy was referred to as ma‘i pake (Chinese disease). It was also known on the islands as ma‘i ali‘i (royal disease), ma‘i lepera (leprosy), and ma‘i ho‘oka‘awale ‘ohana (the sickness that tears families apart), among other names (Inglis 2013: xiii). One story about its origins in Hawai‘i posits that a cook for a member of the royal family who had come to Hawai‘i from China during the sandalwood trade era (1812–30) fell ill with leprosy and infected the royal family. Chinese were also blamed for spreading leprosy to Australia and New Zealand, where they were subjected to even greater discrimination and control. See Heinrich for more on under- standings of China as the “Sick Man of Asia” and the “Cradle of Smallpox.” Heinrich also draws attention to the legions of characters in Chinese Republican period literature who “spit blood, develop sores, hallucinate, hobble, go mad, and succumb to general weakness and malaise,” literary diseases that “take on more-than-subtle allegoric functions as repre- sentations of the larger metaphorical ills of China and Chinese nationhood in a tumultu- ous time” (2008: 6). More recent Chinese writers also speak of disease allegorically, in- cluding Bi Shumin (毕淑敏, 1952–) in Zhengjiu rufang (拯救乳房, Save the Breast, 2003), which at the same time that it analyzes the effectiveness of individual and group therapy, indeed narrative therapy to alleviate suffering (Choy 2016: 151), also uses breast cancer as a metaphor for the sickness of a nation undergoing rapid economic and social change (Knight 2009). Shelley Chan discusses Chinese writer Yan Lianke’s (阎连科, 1958–) Riguang liunian (日光流年, Streams of Light and Time, 1998) as an allegory of modern China, “a sick man who is fated to die if no right medicine is found for him” (184); this novel features a village where residents fight a disease believed to be esophageal can- cer (Tsai 2011: 91). See also Tan Guanghui (2007) for more on disease as metaphor in mod- ern Chinese literature. Esophageal cancer is the explicit focus of such works as Japanese writer Yamauchi Reinan’s (山内令南, 1958–2011) prize-winning novella “Gan damashii” (癌だましい, Cancer Spirit, 2011), published in Bungakukai the same year she died from the disease.
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20 Father Damien moved to Hawai‘i in 1863, and in 1873 he volunteered to serve at Kalawao, where he worked indefatigably until his death from leprosy in 1889. Although greatly hon- ored in Hawai‘i/the United States (including by President Barack Obama), Europe, and India (by Mahatma Gandhi, 1869–1948) as well as by the Catholic Church (which canon- ized him), he also has been the source of considerable controversy. Moblo (1997), for in- stance, calls attention to Hawaiian complaints of Damien as “overbearing” and abusing power. 21 As Nigerian writer Chinua Achebe’s (1930–2013) narrator writes in Things Fall Apart (1958), “Every clan and village had its ‘evil forest.’ In it were buried all those who died of the really evil diseases, like leprosy and smallpox…. An ‘evil forest’ was, therefore, alive with sinister forces and powers of darkness” (1994: 148). It is a piece of this “evil forest” that the villagers give the missionaries, as “a real battlefield in which to show their victory” (149). 22 The first leprosarium in Nigeria was founded by the Presbyterian Church in 1928, in to- day’s Akwa Ibom state. Others established during the colonial period include Okegbala in Kwara state, Osiomo in Edo state, and Yadakunya in Kano state (Udo 2013: 230). 23 Worboys discusses the work of belra and medical missionaries in Britain’s tropical Afri- can and Asian colonies, noting how they increased understanding of leprosy as “a tropical
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3 Leprosy and East Asia
In Japan, as in much of the world, leprosy was for the most part highly stigma- tized from early times. Chapter 22 of the Nihon Shoki (日本書紀, Chronicles of Japan, 720), one of Japan’s oldest extant written works, includes a story about the Empress Suiko (推古天皇, Suiko Tennō, 554–628) caring for a patient with leprosy or a similar disease (Yamamoto 1993: 1).24 Legend has other empresses similarly looking after such patients. But Japan’s oldest extant medical text, the thirty-volume Ishinpō (医心方, 984), fingers “evil ways” (悪風, akufū) as a cause of leprosy (Tanaka 2012: 12). Likewise, the early-Heian (794–1185) Nihon Ryōiki (日本霊異記, 822), Japan’s earliest collection of Buddhist tales, cites the Lotus Sutra as declaring that anyone who slanders an individual who
disease linked to race and backwardness,” but also one whose individual patients “de- served compassion and care” (2000: 218). 24 Burns (2019) and Yamamoto provide comprehensive histories of leprosy in Japan, as have many others. Burns exposes a state “shaped by contesting interests, multiple and compet- ing agendas, and lacunae of power” (1993: 18); she criticizes the “denunciatory narrative” that has guided much discourse on Hansen’s disease in Japan, providing a more nuanced perspective on leprosy policy as unfolding “as part of the larger citizenship project of modern Japan” (260).
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upholds this sutra will be struck with “white leprosy” (白癩病).25 And the late- Heian Konjaku monogatarishū (今昔物語集, Tales of Times Past) features the monk Shinkai, who is punished with leprosy for obstructing a “solemn Dharma assembly” and for being jealous of a monk of much higher rank (20:35; Tanaka 2012: 13). The narrator notes that after he became ill with leprosy, Shinkai had to take refuge among the beggars of Kiyomizu and Sakamoto because every- one, even his former nurse, believed him “unclean.” But, “even there, among the crippled and deformed, he was held in abomination, and after three months he died” (Ury 1979: 129).26 Similarly, thirteenth-century Japanese Bud- dhist documents speak of leprosy as a karmic disease (業病, gōbyō). The Bud- dhist monk Eison (叡尊, 1201–1290), founder of what was later known as the Shingon Ritsu school (真言律, Shingon-Vinaya), declared: “Don’t they [people with leprosy] realize that because of the grave sin of slandering the Mahayana, they incur the torment of the ten directions’ Avīci Hell? And that, because of the gravest, incessant residual karma, they catch the serious disease of human leprosy? If they do not repent in this life, the future will surely be the same” (Quinter 2007: 450).27 In general, before its medicalization in Japan in the late eighteenth century, leprosy was understood as tenkeibyō (天刑病, heavenly punishment) or gōbyō (業病) (Burns 2012: 301). Those with the condition were often cast out from their communities; in the 1600s, Dutch merchants de- scribed people with leprosy in Japan as condemned to a life of mendicancy (Veith 1947). Japanese established leprosy hospitals in Japan as early as the 700s (by Em- press Kōmyō [701–760], wife of Emperor Shōmu [701–756]); Western mission- aries followed, first in the Tokugawa era (1600–1868) and then in earnest in the late nineteenth century (Veith 1947: 911).28 Late nineteenth- and early twenti- eth-century Japanese believed the prevalence of leprosy in their nation to be a sign of its backwardness, and beginning in 1907, the Japanese government en- acted increasingly stronger measures modeled after the policies of European imperial powers. These regulations culminated in the 1931 “Leprosy Prevention Law” (rai yobōhō, 癩予防法), which forcibly isolated Japanese afflicted with
25 Japan’s National Hansen’s Disease Museum displays this and other passages from early Japanese texts that articulate the stigmas associated with leprosy. For more on this mu- seum, see below. 26 See also Konjaku monogatari shū (1970: 201). 27 Cited in Goble (2011: 16). The term rai (癩) referred to a range of skin diseases, including true leprosy (Burns 2012: 301). 28 For more on early Western leprosy relief efforts in Japan, see Tanaka (2012: 18–20).
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29 To give one example, the Kyushu Leprosarium (est. 1909) was surrounded by concrete walls and deep moats guarded by police; patients were dressed in striped uniforms. Lep- rosaria established by British missionaries were not as brutal (Hirokawa 2005). 30 Japan colonized Taiwan in 1895 and Korea in 1910. It never formally colonized China, but it subjected the mainland to severe cultural, economic, political, and military pressure from the end of the nineteenth century to the mid-twentieth and has been understood as a semicolonial power. Japan seized Manchuria (northeast China) in 1931 and in 1932 pro- claimed it the nominally independent state of Manchukuo, but it was in many ways an informal colony of Japan. 31 The Supreme Public Prosecutors Office admitted to being involved in more than two dozen “special court” trials even after leprosy became a curable condition. The Japanese continue to reject requests for compensation from Korean and Taiwanese leprosy pa- tients whom the Japanese confined at Sorokdo and other leprosaria.
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sanatoriums under the government’s decades-long segregation policy” (“Japan Court” 2019).32 There have been many attempts to educate the Japanese population about leprosy, including special instruction in elementary schools and the establish- ment in 2007 in Tokyo of the National Hansen’s Disease Museum (国立ハンセ ン病資料館, Kokuritsu Hansenbyō Shiryōkan). Even so, grave misperceptions persist (Burns 2012; Okamoto 2018).33 In one particularly unfortunate incident,
32 In its June 2019 ruling, the Kumamoto District Court noted that “many of the relatives were rejected by schools, ostracized in their hometowns, discriminated against in mar- riage, turned down for jobs and had ‘their choices in life restricted,’ such as their personal relationships or career path” (“The Damage Done” 2019). Japanese Prime Minister Abé Shinzō (安倍晋三, 1954–) announced in July 2019 that the government would not file an appeal against this ruling, stating, “We must not prolong the hardship of family members who have gone through something indescribable” (“In ‘Rare’ Move” 2019). 33 Japan’s National Hansen’s Disease Museum is located just outside of Kiyose, Tokyo, which is home to numerous hospitals. Its ideals (理念), as advertised in the information pam- phlet provided to visitors, are to do as much as possible to disseminate information and promote understanding of Hansen’s disease; to do as much as possible to eradicate the prejudices, discrimination, and segregation that accompany the disease; to learn from the prejudice and discrimination that began early in Japan’s recorded history and have spanned many years; to learn from the history of mistaken segregation policies; to make apparent the experiences of those who have been subject to suffering and injury and of those who fought against the disease; to do as much as possible to restore the respect of those who have been subjected to the suffering and injury accompanying Hansen’s dis- ease and to nurture the spirit of respect for human rights; and to do as much as possible to actualize the social integration of those who have been subjected to the suffering and injury accompanying Hansen’s disease. In this spirit, the museum provides ample printed materials for visitors, including special materials for schoolchildren of all ages; the plac- ards accompanying the exhibits speak explicitly of the discrimination (差別) and preju- dice (偏見) faced by persons with this disease since ancient times. Japan’s National Han- sen’s Disease Museum carefully traces the history of Hansen’s disease in Japan from earliest times to the present. It features large exhibits on everything from kabuki, litera- ture, and other arts and cultural endeavors, and baseball teams and other sporting events in which Japanese individuals with Hansen’s disease have participated, to the complex and painful history of segregation of persons with Hansen’s disease (including in Japan’s early twentieth-century colonies of Korea and Taiwan) and the Japanese physicians who combatted this disease, including Dr. Yuasa Yō (湯浅洋, 1926–2016) (Author’s personal visit March 2019). Dr. Yuasa was renowned not only for his advocacy on behalf of leprosy patients but also as a doctor who strived to understand the feelings of patients and “how severe pa- tients’ agony was.” He also believed firmly that “leprosy issues were caused not only by medical but also social problems” and worked avidly to combat stigma (“Tribute” 2016: 1–2). See the Sasakawa Foundation’s A Life Fighting Leprosy (2015) for more on Dr. Yuasa. The precursor to today’s National Hansen’s Disease Museum was the Prince Takamatsu Memorial Hansen’s Disease Museum (高松宮記念ハンセン病資料館,
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Takamatsunomiya Kinen Hansenbyō Shiryōkan, est. 1993), which in 1998 exhibited the work of Cho Kun-je (Cho Geun-Jae), a North Korean resident of Japan who began taking pictures of Hansen’s disease patients in the 1960s and had compiled more than twenty- thousand by the time of his death in 1997 (“Late Korean Photographer” 2014). In 2014–15, the National Hansen’s Disease Museum held another exhibit of works by Cho Kun-je. 34 The students wrote to the residents of the leprosarium such things as leprosy is “a disease that melts the bones and body, so if one of my friends got it I would stay away from them” (“Elementary Kids” 2014). 35 During the colonial period (1910–45), Japanese authorities referred to leprosy as nabyŏng (나병) and those with leprosy as nabyŏngja (나병자). Korean public health documents continued this usage until the turn of the twenty-first century.
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36 Jung discusses the differences between the Western and colonial state-run leprosaria. See especially p. 246. Jung also describes the Korean Leprosy Prevention Act (261). For more on Japanese colonialism and disease in Korea, especially mental illness, see Yoo (2016). 37 The most common operation was forced sterilization, but the Japanese were also known to operate on the corpses of those with Hansen’s disease. Japanese treatment of Koreans with Hansen’s disease mirrored the subjugation of Japanese afflicted with this disease. The case of Cambodia under French colonial rule provides an important comparison with that of Korea. Au discusses the differences between Khmer and French perceptions
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Immediately after Japan’s defeat in World War Two and the evacuation of Japanese police from the Sorokdo National Leprosarium on August 20, 1945, many Korean leprosy patients fled to the northern part of the country, where it was understood that leprosy rates had long been low (Kim 2012: 9). But in 1947, concerned with the influx of people with leprosy, North Korean authorities established a leprosarium at Taedo Island, off the coast of Wŏnsan (ibid.: 8). American forces bombed this port shortly after the outbreak of the Korean War (1950–1953) and evacuated (i.e., returned) the leprosy patients to the So- rokdo leprosarium. Without a doubt, life for Koreans with leprosy did not im- prove with Japanese withdrawal from the peninsula; Koreans treated individu- als with Hansen’s disease as cruelly as the Japanese had. To give one example, in 1948, hospital workers and security officers on Sorokdo killed eighty-four patients over a management dispute. Former residents have described Sorokdo as “hell on earth”; conditions on the island were brutal, with patients sterilized, forced into hard labor, and per- mitted only minimal contact (never physical) with their children, among other abuses (Kim 2013). The Korean government quarantined Hansen’s disease pa- tients on the island until 1963 and until recent years did not permit them to leave without permission from a physician.38 As Norimitsu Onishi (2007) has rightly noted, Sorokdo has been a “place of lifetime banishment and silent deaths for generations of people with leprosy.” But with discrimination against those with Hansen’s disease long rampant in Korea, conditions off the island have not been much better. To be sure, in 2000 South Korea amended its Contagious Disease Prevention Law, changing the designation of this disease from leprosy to Hansen’s disease (한센병, Hansenbyŏng) and those afflicted by it as Hansenin (한센인, lit., people with Hansen’s disease). And in Korea today, leprosy is one of the most “morally compelling and publicly appealing diseases to champion” (Kim 2012: 65). Korean and even international celebrities, everyone from politicians to en- tertainers, regularly visit Sorokdo, as well as other Korean leprosaria.39 But broader social attitudes have not changed significantly; residents of Sorokdo still tend to be shunned by their compatriots. Some were encouraged by the
of leprosy, noting that Cambodians were far more tolerant of leprosy patients than were French colonists. Au also points out that leprosy incarceration remained a policy of the postcolonial government until the 1960s (2011: 157–179). 38 The Japanese presence on Sorok remains strong even now, nearly seventy-five years after the fall of the Japanese empire. The majority of the island’s colonial-era buildings still stand, and one of Sorok’s major intersections features a Shinto shrine. 39 These include Sŏngsimwŏn (Kyŏngsang Province) and the Lazarus Village in Ŭiwang (Kyŏnggi Province) (Jane Kim 2012: 67).
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4 Propagating Prejudices
For centuries, literary works in many parts of the world tended to enforce pop- ular prejudices against leprosy, associating it with spiritual defilement and ste- reotyping those with the disease as sinful and frequently lecherous, if not sub- human (Brody 1974: 189). In the Western literary tradition, characters with leprosy are often less fully developed individuals than examples of moral op- probrium attached to physical disease (Leavy 1992: 3). As Kerri A. Inglis ex- plains, “Cultural representations perpetuate a horror of the disease and a nega- tive stigma of those with the disease…. From the late 1800s to the present, popular culture (especially literature, and later film) has represented leprosy in a way that has perpetuated the horrors and stigma attached to it, reinforcing colonial perceptions and misrepresentations” (2013: 108). Remarkably, this re- mained the case long after the disease etiology was understood and a cure dis- covered. As Rod Edmond argues, “Leprosy retains its traditional power of sig- nification regardless of the state of medical knowledge … It would be difficult to find another time-lag so great than in the capacity of literature and related forms of cultural representation to retain and exploit forms of ignorance and superstition that would be scorned in other fields” (2006: 247).41 Versions of the popular European legend of Tristan and Isolde depict a “lep- rous duke” asking the king to turn over to him the adulterous Isolde so the duke
40 Fears of prejudice are justified. A 2005 Korean government survey revealed that 86 per- cent of Koreans would not be comfortable with their children marrying the children of an individual with Hansen’s disease and that 55 percent of Koreans support the forced segre- gation of these individuals (Jeffreys 2007). 41 Indeed, many studies of stigma and disease comment on the tempering if not elimina- tion of stigma as disease prevalence wanes or as medical interventions become more effective.
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42 Although some have argued that numerous medieval cases of leprosy were actually syphi- lis, many scholars believe that syphilis was unknown before the global voyages of the late fifteenth and early sixteenth centuries. As Piechocki notes, it was during this era that “physicians and poets alike captured, for the first time, the bonds among poetic, philologi- cal, and medical discoveries as an unprecedented inquiry into the emerging discipline of immunology” (2016: 2). Piechocki’s focus is the Italian physician and poet Girolamo Fra- castoro (ca. 1476–1553), including his Syphilis sive morbus gallicus (Syphilis or the French Disease, 1530). 43 See Wetherall-Dickson (2013) for more on Byron’s relationship with Ford.
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That a leper is unclean, however, should be insisted upon; and the segre- gation of lepers, from what little is known of the disease, should be rigidly maintained. On the other hand, the awful horror with which the leper has been regarded in the past, and the frightful treatment he has received, have been unnecessary and cruel…. [But] the segregation of the lepers on Molokai is not the horrible nightmare that has been so often exploited by yellow writers…. I would prefer one year of life in Molokai to five years of life in the above-mentioned cesspools of human degradation and misery [the East End of London, East Side of New York, Stockyards of Chicago]…. In Molokai, people are happy.” (1909: 290–291, 294)
44 For more on London, leprosy, and Hawai‘i in his Pacific stories, see Edmond (1997: 194– 222) and Reesman (2009: 107–176). I discuss the Kaluaiko‘olao narrative later in this chap- ter. London visited the Moloka’i leprosarium in 1907 and 1915.
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London’s story “Good-bye, Jack,” also included in House of Pride, contrasts defenders of the Moloka‘i leprosaria, who claim “the horrors of Molokai are all poppycock…. They have a much finer climate than Honolulu, and the scenery is magnificent” (2002a: 104–105) with the terror of the “living dead” who have been banished there. Jeanne Campbell Reesman rightly notes that from his very first Hawaiian story, “The House of Pride” (1907), London “directly attacks racism and colonialism and he offers scathing portraits of white masters” (2009: 109). Through numerous anecdotes of life on Moloka‘i, and particularly through telling the personal stories of individuals with leprosy, London humanizes its residents. But he tends to disregard the trauma of forced quarantine. Western literature is not alone in propagating stereotypes and enhancing stigmas regarding leprosy. In China, the seventeenth-century novel Xingshi yinyuan zhuan (醒世姻緣傳, Marital Destinies to Awaken the World), pub- lished under the penname Xizhou Sheng (西周生, lit. Scholar of the Western Zhou), cites a Ming dynasty (1368–1644) law that those with eji (恶疾, malig- nant diseases) will be divorced and that tian paochuang (天疱疮, disfiguring skin sores) were the most serious type of eji (Leung 2009: 63).45 The novel Mari- tal Destinies to Awaken the World is known largely for its depiction of “the tor- ment of a weak-willed man by his shrewish wife as an instrument of karmic retribution for sins committed in a previous incarnation” (Plaks 1985: 545). Also noteworthy is the Confucian scholar Song Xiangfeng’s (宋翔鳳, 1776– 1860) poem “Mafengyuan” (麻風院, Mafeng Hospices), where the poet de- clares, “I hear that there are mafeng hospices / that have forever been caring for patients./ But I fear the disease cannot be stopped, / that it will swiftly spread” (1960: 869).46 And finally there is “Chen Duoshou shengsi fuqi” (陳多壽生死夫妻, Chen Duoshou and His Wife Bound in Life and Death, The Predestined Marriage of Chen Duoshou), included in Feng Menglong’s (馮夢龍, 1574–1646) collection Xingshi hengyan (醒世恆言, Stories to Awaken the World, 1627).47 This tale
45 Tian paochuang was a common Ming-Qing period term for disfiguring sores on the skin (Leung 2009: 256 n. 15). Leung attributes Marital Destinies to Pu Songling (蒲松齡, 1640– 1715), but most scholars agree that the author remains anonymous (Berg 2001: 660). Thank you to Miya Xie for proofreading my Chinese and Korean translations and ro- manizations in this book. 46 The term mafeng (麻風, lit., numb wind, numbing wind) is the modern Chinese term for Hansen’s disease; it has been used since at least the fifteenth century (Leung 2009: 4). See also Hanson (2011: 74–76) and Schonebaum (2019: 126–137). 47 Stories to Awaken the World is the third of the Sanyan (三言, Three Words), three cele- brated Ming dynasty (1368–1644) collections of forty stories each.
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His flesh withered, his skin chapped; The toxins in his body broke out in boils. He itched all over in misery, day and night. It was far worse than scabies and the same as leprosy. The handsome boy now looked like a toad; His skin was like that of an old turtle. The scratching fingers smelled of pus; The sordid body gave off a foul stench. (2009: 189)
Zhu Shiyuan’s wife is no more sympathetic, calling Duoshou a “toad” and de- manding that the wedding be called off. The couple insist on marrying, then several years later attempt to commit double suicide by arsenic, only to be re- vived by their panicked parents, who rapidly secure an antidote to the poison. Paradoxically, the arsenic cures Duoshou of his leprosy; his lesions heal, and it is as though “he had shed his skin, changed the bones, and found another in- carnation” (203). Feng Menglong’s “Chen Duoshou and His Wife” stands in con- trast with Buddhist and Daoist tales of healing, which focus on righteous monks and religious bodily techniques, respectively. Instead, it echoes Confu- cian stories that center on virtuous acts, in this case suicide (Leung 2009: 68, 70).48 Nevertheless, “Chen Duoshou and His Wife” reinforces the idea of lep- rosy as utterly disfiguring and incompatible with “normal” life.49
48 Any number of early Chinese tales feature virtuous wives who stay with their diseased husbands. 49 Also noteworthy in this context is Nobel Prize-winning Chinese writer Mo Yan’s (莫言, Guan Moye, 管謨業, 1955–) celebrated Hong Gaoliang Jiazu (紅高粱家族, Red Sor- ghum Family), first published as a “family saga” in 1987, adapted into a film that same year, and published in more complete form in Taiwan in 1988. In this novel, which spans the 1920s to the 1970s, the protagonist’s grandmother (Dai Fenglian/Nine) is forced into mar- riage with a wealthy older man who has leprosy (Shan Bianlang). To be sure, the narrator initially notes that many families had dreamed of marrying into the Shan family, given the success of their distillery (2012: 35). But Dai Fenglian, the person actually getting married, has a very different reaction. She is horrified to hear that he has the disease and deter- mines that it would be better to die rather than marry a “leper” (如其那样，还不如一 死之, 38). She is warned by one of the men carrying her bridal sedan that if she lets Shan Bianlang touch her, her skin will rot away (39). As it turns out, she is “rescued” by Yu
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In early Korea, dance from Kyŏngsang Province included the mundungi (lep- rosy) mask dance (탈춤, t’alch’um). These performances featured an individu- al posing as a person with leprosy who shook “his bent arms and limping legs, seemingly drunk to the beat of the music,” and then, touring the stage, made gestures “typical of diseased body” (病身, pyŏngshin). The primary objec- tive of such performances, the so-called diseased body dance (病身춤, pyŏngshinch’um) was to channel anger against the local, exploitative yangban (Jane Kim 2012: 16–17), but the dances also ridiculed those with leprosy.50 Simi- larly, a number of nineteenth-century vernacular novels, including Yosŏntamjŏn (요선담전, Tale of the Origin of the Yo Family), followed a pattern somewhat similar to that of the Chinese story “Chen Duoshou and His Wife”: in the Kore- an version, an elite yangban woman with leprosy who has been cast out from her own family and taken in by a kind-hearted man is magically cured after a mysterious near-death experience, and the man who has stayed with her de- spite her disease is elevated to yangban status. The Korean tales, however, say very little about leprosy itself. They expect the audience to assume that the disease was the result of divine punishment, or even that it stood in for a divine curse (ibid.: 19, 21, 23). Early twentieth-century Korean literature also reinforces stereotypes, including an early work by the preeminent poet Sŏ Chŏngju’s (서정주, 徐廷柱 1915–2000) entitled “Mundungi” (문둥이, The Leper, 1941), which depicts a man with leprosy as a cannibal, drawing from the early super- stition in some parts of the world that consuming the flesh of a child could heal leprosy: “A leper grieved/ The sun and blue sky.// As the moon rose over the barley field,/ He ate a child,// And like a flower he wept crimson tears all night.”51
5 Countering Violence
As the above examples make clear, literature has frequently both exposed and promulgated the stigmas to which persons with leprosy are subjected. But a
Zhan’ao, another bearer of her bridal sedan, with whom she falls in love. Yu Zhan’ao not only rescues Dai Fenglian from a bandit, but he kills her new husband and his father, leav- ing her a wealthy woman and free to marry Yu, which she does. As is true of the literary works discussed in the following section, Red Sorghum depicts Shan Bianlang as suffering not from the disease of leprosy but instead from the reactions of others to the disease. 50 Other contemporary plays focused more on portraying the marginalized lives of people with leprosy, including T’ongyŏng ogwangdae (T’ongyŏng Five Jesters) and Kasan og- wangdae (Kasan Five Jesters) (Eunjung Kim 2017: 261). 51 Eunjung Kim discusses the association of leprosy with cannibalism (2017: 175). See also Stedman (1899: 578).
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5.1 Leprosy Narratives and Hawai‘i One of the most prominent early twentieth-century examples of this phenom- enon is the famed Hawaiian-language memoir Ka Mo‘olelo Oiaio o Kaluaiko‘olau
52 As is true of many critics, Tanaka distinguishes between Hansen’s disease literature that asserts human dignity in the midst of oppression and literature that “expresses content- ment or describes the happiness found in the hospital,” literature that often has been dismissed as writing coerced from patients (2012: 101). Yet expressing happiness is itself a form of asserting human dignity. Tanaka’s focus is Japanese “leprosy literature” (癩文學, rai bungaku, defined in Japan as literature written by patients before the disease was cur- able), but many of her observations are true more broadly. In Japan, leprosy literature became “Hansen’s disease literature” (ハンセン病文学, Hansenbyō bungaku) in 1946, with the introduction of the sulfone drug Promin to Japanese hospitals. Tanaka notes that the shift from a disease that was incurable to one that was curable resulted in a notable change in patient writings (2012: 4–5). 53 Also worthy of note is American literature on Carville, including Stanley Stein’s (1899– 1967) autobiography Alone No Longer: The Story of a Man Who Refused to Be One of the Living Dead (1963). Stein, born Sidney Maurice Levyson, was a pharmacist in Texas when at age thirty-two he contracted leprosy and was exiled to Carville, where he spent the re- mainder of his life fighting on behalf of Hansen’s disease patients to be treated as human beings. He notes in his autobiography that “we were … still being treated very much like inmates of a penal institution … although our malady was a thousand times less conta- gious than the common cold and many hundreds of times harder to transmit than tuber- culosis … We could not ride on trains or buses. Marriages were forbidden…. Medically we had come a long way. Sociologically we were not very far removed from the days of the hand bell” (1963: 231). Notably, when Stein is first diagnosed, both he and his parents are “not greatly concerned with the medical aspects of the disease … but [instead] mostly with its social consequences” (23).
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(The True Story of Kaluaiko‘olau as Told by His Wife Pi‘ilani, 1906). Narrated by a Hawaiian woman known simply as Pi‘ilani, The True Story underscores the terror of being deported to Kalawao: it refers to leprosy as the disease that sep- arated families and to Kalawao as a grave where people are buried alive (Kala- wao, kahi hoi i kapaia e kekahi poe o ka luakupapau kanu ola, 78).54 Early in the narrative Pi‘ilani describes how one day she noticed a small rash on her husband Kaluaiko‘olau’s cheeks. When the couple finally speaks about it, Pi‘ilani hears a voice within her husband declaring, “You are branded” (ua kuni ia oe!, 76), a voice that is “fended off by hope” by another voice announcing, “You will be saved” – saved, but not without great sacrifice. Kaluaiko‘olau ulti- mately flees with his wife and son, who also has leprosy, deep into a remote valley that has become a refuge for Hawaiians afflicted with the disease. In 1893 Kaluaiko‘olau kills a sheriff and two soldiers who have come to arrest him; he hides with his family until his death. Leprosy eventually takes the lives of Pi‘ilani’s husband and son, but little is said in The True Story about the disease itself. The narrative makes very clear that it is not the disease that frightens, but instead the social ostracizing and condemning of those “branded” with the disease.55 The major difference between Pi‘ilani’s story and Jack London’s adaptation “Koolau the Leper” is Pi‘ilani’s emphasis on the trauma of separation. At no point in The True Story does Pi‘ilani express fear at contracting leprosy. Nor do any members of the mountain community who are harboring her family ex- hibit anxiety toward the physical symptoms of the disease (Edmond 1997: 204– 205). As Kerri A. Inglis summarizes, “For many Native Hawaiians, segregation was worse than the disease itself” (2013: 86).56 This was especially true after Hawaiian authorities prohibited kōkua (helpers) from accompanying those banished to the leprosy settlements (Frazier 2001: ix).57
54 Piilani’s story was transcribed by journalist John G.M. Sheldon (Kahikina Kelekona), who published it in book form in 1906 as Kaluaikoolau! Frazier (2001) reprints this story in Hawaiian and provides an English translation. 55 See also Inglis (2013: 71–73). Inglis speaks of this story as one that addresses both the crim- inalization of leprosy and adaptation and resistance to the segregation law. 56 This sentiment is confirmed not only in The True Story but in patient writings, including Ambrose Kanoeali‘i Hutchison’s unpublished manuscript on Father Damien, where he writes, “to mention the name ‘Kalawao’ was to arouse terror in the hearts of the stricken victims of the dread scourge and their opposition of being sent there” (Inglis 2013: 97). 57 Pi‘ilani’s story inspired a number of writers in addition to Jack London, including Ameri- can W.S. Merwin’s (1927–2019) The Folding Cliffs: A Narrative (1998). Critics have pointed to the “epic” nature of this narrative poem. Says Michael Thurston, “We recognize, from the beginning, that we are in epic territory…. The Folding Cliffs is a sort of anti-Aeneid for Hawai‘i, an epic that treats not the founding of a city but the conquering, division, and
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American writer James Michener’s (1907–1997) 937-page novel Hawaii (1959) speaks of the devastating physical symptoms of leprosy, while arguing – as does Pi‘ilani’s narrative –that social stigmas against this disease caused far greater suffering than the disease itself. Hawaii tells the story of the Hawaiian Islands beginning with their geological creation millions of years ago, narrat- ing the experiences of the diverse human communities who populated the is- lands from the early Polynesians to Christian missionaries, Asians (especially Chinese and Japanese), Americans, and Europeans. The book recounts the im- pact of foreign contact on the Kānaka Maoli, including the introduction of in- fectious diseases, which decimated the population. Particularly noteworthy is Michener’s focus on the treatment of immigrant Chinese who have leprosy. Hawaii features Kee Mun Ki and his wife Char Nyuk Tsin, a Chinese couple who emigrate to the islands in the mid-1800s. While in Hawai‘i Mun Ki con- tracts leprosy and is deported to the Kalawao leprosarium on Moloka‘i, while Nyuk Tsin accompanies him as his kōkua. Shortly after Mun Ki is diagnosed, he thinks to himself:
Mun Ki was a leper, and the law said sternly that he must give himself up, and be exiled for the rest of his life to a dismal lepers’ island. He was dif- ferent from all men, for he was irretrievably doomed to die of the most horrible disease known to man: His toes would fall away and his fingers. His body would grow foul, and from long distances it would be possible to smell him, as if he were an animal. His face would grow big and thick and scaly and hairy, like a lion’s; and his eyes would glass over like an owl’s in daylight; and then his nose would waste away, and his lips fall off, and the suppurating sores would creep across his cheeks and eat away his chin until at last, faceless, formless, without hands or feet, he would die in ag- ony. He was a leper. (1959: 475)
At this early stage of the disease, Mun Ki knows that exile is imminent, but he also is far more fearful of what the disease will do to his body, that he first will become an animal and then disintegrate altogether. In contrast, Nyuk Tsin thinks not of Mun Ki’s impending disfigurement but instead of the social consequences of the disease: “Nyuk Tsin had to keep her diseased husband … away from public view, for that year there had been a general roundup of lepers, and some one hundred and sixty had been shipped off to the leper island to perpetual banishment and slow death; suspicious
dispersal of a people and its culture” (2000: 181). In this text, those with leprosy suffer much more from social responses to the disease than from the disease itself.
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watchers had perfected tricks whereby to trap unsuspected lepers” (475). Soon thereafter the narrator declares, “These were evil years, indeed, in Hawaii” and explains the history of leprosy on the islands, how the disease swept through them at about the same time as the first Chinese arrived, so even though lep- rosy “had never been a conspicuously Chinese disease,” it was widely called the “mai Pake” (the Chinese sickness). This virtually guaranteed that Chinese with leprosy were treated even more appallingly than the Hawaiian natives, who far outnumbered them.58 The narrator reveals, “These were the years when an otherwise decent man would study his enemy’s face, and when he saw a pim- ple or impetigo or eczema he would denounce his enemy, and the man would be hunted down, arrested and thrown into the cage. There was no appeal, no hope, never an escape” (476). Mun Ki and Nyuk Tsin flee to the mountains, where a Hawaiian couple shel- ters them from the police, believing that “no leper ever came to Jesus without receiving aid, and no leper will come to [our] house … to be turned away” (485). But they soon are discovered, and Mun Ki is banished to Kalawao. Con- ditions there are horrific. The narrator declares, “In the previous history of the world no such hellish spot had ever stood in such heavenly surroundings…. The lepers had been thrown ashore with nothing except the sentence of cer- tain death, and what they did until they died, no man cared” (491, 493). There are no facilities on Kalawao, and when the authorities in Honolulu forget to send replenishments of food, the settlement “degenerated into absolute ter- ror,” with the death rate soaring (494). Michener’s novel repeats stereotypes of the “lecherous leper,” depicting women on Kalawao as subjected to rampant sexual assault by fellow patients. But Hawaii also explicitly condemns the out- side authorities, declaring, “Rarely in human history had this calloused apo- thegm [‘Out of sight, out of mind’] been more concisely illustrated than at the Kalawao lazaretto. The government had decreed: ‘The lepers shall be banished,’ as if saying the words and imprisoning the leprous bodies somehow solved the problem” (496). The Moloka‘i leprosaria have continued to capture the imagination of American writers. Alan Brennert’s (1954–) novel Moloka‘i (2003) opens in 1891 and features Rachel Kalama, then a young Hawaiian girl who lives with her family in Honolulu. While at the harbor one day, Rachel spots a “small, decrepit
58 Some pages later, the narrator repeats that the term mai Pake is ironic, given that “the scourge neither came from China nor did it especially affect the Chinese” (491). The dis- ease was also called ma‘i ali‘i (the royal sickness), since a royal was believed to have been the first afflicted, and ma‘i ho‘oka‘awale ‘ohana (the separating sickness), given the en- forced segregation of leprosy patients (Frazier 2001: ix).
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59 The novel also depicts a male leprosy patient whose testicles shrink dramatically and who develops breasts, but this, tellingly, is something he has always wanted (220).
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5.2 Japanese and Korean Stories of Leprosy Narratives such as Pi‘ilani’s The True Story, Michener’s Hawaii, and Brennert’s Moloka‘i attest to the sustained commitment of twentieth- and twenty-first- century writers not only to exposing the contemporary and historical abuse inflicted on people in Hawai‘i with Hansen’s disease but also to depicting them as suffering even more from this abuse than from the physical symptoms of the disease. Literature on leprosy from other parts of the globe similarly has called for changes in public attitudes and behaviors toward people with Hansen’s dis- ease, including in Japan, home to the world’s largest corpus of writing on this condition.60 Most notable is Kaga Otohiko’s ten-volume Hansenbyō bungaku zenshū (ハンセン病文学全集, Complete Collection of Hansen’s Disease Lit- erature), which includes fiction, poetry (free verse, haiku, and tanka), essays, and children’s writing, much of which was produced by patients confined within Japanese leprosaria and that first appeared in the in-house journals of
60 For more on Japanese literature and Hansen’s disease see Tanaka 2012, 2013, 2016. See also Burns (2019: 187–198) and the list of “Memoirs and Other Books and Poetry by Individuals Who Have Personally Faced the Challenges of Leprosy/Hansen’s Disease,” Oral History Project of the International Leprosy Association, Global Project on the History of Leprosy, www.idealeprosydignity.org. This inventory contains texts published from 1906 to the 2000s from Australia, Brazil, China, England, Hawai‘i, Japan, Paraguay, South Korea, and the United States.
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61 The editors of this anthology make a point of labeling these works “Hansen’s disease lit- erature” (ハンセン病文学, Hansenbyō bungaku), regardless of year of publication (cf. Tanaka 2012). In Japan, leprosy/Hansen’s disease literature generally is understood as lit- erature on leprosy by those with this disease. 62 Japanese interest in Hansen’s disease remains strong, leading to the publication not only of volumes of literature focused or at the very least touching on the disease, but also of a number of scholarly and popular works including Fukunishi Yukiko’s Hansenbyō ryōyōjo ni ikita onnatachi, a 2016 compilation of the stories of five women who have spent most of their lives as residents of the Kokuritsu Ryōyōjo Matsuoka Hoyōen, and Fujino Yutaka’s Kokō no Hansenbyō ishi – Ogasawara Noboru “Nikki” o yomu, on the physician Ogasawara Noboru (1888–1970), who protested the segregation of people with leprosy. Also worth noting is the Korean essay writer/documentary photographer Gon Choru (Kwon Choul), who moved to Japan in 1994 and in 1999 began working with persons affected by Hansen’s disease. See, for instance, his photobook on the Japanese Hansen’s disease poet Sakurai Tetsuo (桜井哲夫, 1924–2011). Japanese filmmakers have similarly engaged with Hansen’s disease. One primary ex- ample is Kawase Naomi’s (河瀨直美, 1969–) 2015 film An (あん, Sweet Bean, lit. Sweet Red Bean Paste), which showcases an elderly woman with leprosy. Although the woman, Tokue, creates peerless bean paste, she is forced out of her job making this treat when customers recognize that it was leprosy that deformed her hands. Kawase explains, “I want to convey things that everyone feels and events that everyone experiences, be they Americans, Koreans, or Japanese…. For example, people with leprosy have lived with the same conditions around the world for more than 1,000 years, in places like India and Ko- rea, so it’s something that everyone can understand” (Schilling 2015). Kawase is definitely simplifying matters, but her larger point is apt. The film An is based on Japanese writer Sukegawa Dorian’s (助川ドリアン, 1962–) novel of the same title (2013), which is set in the 1990s, around the time the Leprosy Prevention Law was abolished (“Author of Novel on Leprosy,” 2018). Even more noteworthy is Miyazaki Hayao’s (宮崎駿, 1941–) blockbuster anime Mono- nokehime (もののけ姫, Princess Mononoke, 1997). Set in the fourteenth century, Prin- cess Mononoke features a woman, Lady Eboshi, as having created a refuge for social out- casts, including people with leprosy. As one individual with leprosy declares, “She is the only person who ever treated us as human. She did not fear our disease. She washed and bandaged our flesh.” Miyazaki, inspired by the suffering he witnessed during his visits to a Tokyo leprosy sanitarium, has spoken out on behalf of people with the disease. 63 Another prominent early twentieth-century Japanese writer with leprosy featured at the National Hansen’s Disease Museum is Akashi Kaijin (明石海人, 1901–1939). Burns dis- cusses how some Japanese writers have used leprosy metaphorically (2019: 196–198).
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生命 生命 They are not human beings.、 、 、 They are life [ ]. They are life itself [ そのもの], life itself [いのちそのものなんです]…. Those people’s “hu- manness” has already died, perished. Only life [生命] lives timidly. Firmly rooted it is. The moment a person contracts leprosy, that person’s human- ness perishes. It dies…. [Only] when we [lepers] have new ideas and new vision, when we possess completely the life of a leper [全然癩者の生活 を獲得する時], then we can again live as human beings…. Mr. Oda, you’re now dead. You’re dead, you’re not a human being. Please think about the origins of your suffering and despair. Don’t they stem from the fact that you’re searching for a humanness that has already died? (43)
Oda does not quite know what to make of all this, and he suspects that Saeki, who is becoming increasingly agitated, must be a little unstable. Nevertheless, echoing Oda in the above passage, Saeki several times refers to those afflicted with leprosy as people, even while denying their humanness and declaring that they are reduced to life at its most elemental. At the same time, Saeki insists that though loss of humanness is an inevitable consequence
64 This distinction is not included in the English translation, where “honored people” (人様, hitosama) is translated as “patients” (68). In contrast, the Korean version preserves the nuances of the Japanese, translating “people” as saram (사람) and “human beings” as ingan (인간, 68).
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And nearby villagers believe his leprosy a curse from a former life. Yet they treat Tokumatsu kindly and invite him to their banquets, even providing him with ample leftovers to take home.65 When Tokumatsu and his family sudden- ly disappear, the villagers worry that the authorities have forcibly removed them to Honmyōji (本妙寺), a temple in Kumamoto the narrator describes as the gathering place for people with leprosy.66 In fact, Tokumatsu has been tak- en not to Honmyōji but instead to a leprosarium in Kumamoto established by the English missionary Hannah Riddell (1855–1932). The narrator makes clear the deep pain inflicted on Tokumatsu as he is being dragged away, and he de- mands to know why he is being treated so ruthlessly. Some of the villagers wist- fully ponder whether the family is better off in their new location than they were before, given the dilapidated hut they called home, but then they recog- nize they are likely mistaken. Story of the Sea contrasts the villagers, who al- though they hardly treat Tokumatsu as an equal do not banish him completely from the community, with the authorities, who bring about undue anguish. Also noteworthy is Tokumatsu’s frequently echoed suggestion that he believes he is being punished, albeit for precisely what he does not know. Stigmas against people with leprosy – in Japan and throughout much of the world – have been so strong that these individuals often believed they were themselves to blame, both for their disease and for how they have been treated by society because of their disease. Inhumane treatment of people with leprosy is a hallmark of Korean writ- ings on the disease, a literature that dates back centuries but grew substan- tially beginning in the early 1900s. Kim Tongni’s (김동리, 金東里, 1913–1995) “Pawi” (바위, The Rock, 1936) is the best known colonial-period Korean narra- tive on leprosy. As is true of much writing on the disease, this short story high- lights the betrayal of people with leprosy at the hands of their community.67
65 This is not to suggest that the villagers are not afraid of Tokumatsu, but they wait until he has returned home to burn the chopsticks and boil thoroughly the bowl and plate he uses. 66 The narrator neglects to mention that about a decade later, in 1940, as part of the Murai- ken Undō (無癩県運動, No Leprosy Patients in Our Prefecture Movement, est. 1930), people with leprosy living at Honmyōji were forcibly hospitalized. 67 Two other key short stories on leprosy from the colonial period are Korean writer Kim Chŏnghan’s (김정한, 金廷漢, 1908–1996) “Oksimi” (옥심이, 1936), originally titled “Paedŏngnyŏ” (배덕녀, lit. immoral woman, in reference to the protagonist Oksimi’s af- fair after her husband contracts leprosy), and Sim Sung’s (심숭, 沈崧, Yi Ŭnsang, 이은 상, 1911–1960) “Hyŏllurok” (혈루록, The Record of Blood Chamber, 1934). “Oksimi” fo- cuses on a family torn apart by the husband and patriarch Ch’ŏnsu’s leprosy; a violent, brutal man, Ch’ŏnsu first is banished to a hut not far from the family home and then to Sorokdo. Unlike Kim Chŏnghan and Kim Tongni, who did not have leprosy, Yi Ŭnsang did have the disease. He is said to be Korea’s only “[professional] leprosy fiction writer”
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“The Rock” features a wife and mother with leprosy (an individual identified only as “woman,” 여인) whose disease and medical expenses threaten to ruin her family. Her husband brings her rice cakes laced with arsenic and even tells her bluntly that she should drop dead. The woman does not die, despite the arsenic, and instead runs away and finds temporary solace in a primitive hill- side hut. She is abused wherever she goes, and nearby villagers set her new home on fire. Observing the flames from a distance, she collapses and dies. The community is distressed not at her death but because she died with her arms around their precious “Rock of Blessings,” one person exclaiming, “Why did that dirty thing have to die here” (더러운 게 하필예서 죽었노) (2010: 84). Kim Tongni’s story points to the horrific treatment of Koreans with leprosy at the hands of the Japanese. Early in “The Rock” a group of homeless outcasts is concerned by rumors that the Japanese are planning to kill off everyone suffer- ing from paralysis, including those who have been paralyzed by leprosy.68 Yet it ultimately is Korean villagers, not Japanese occupying forces, who torment the protagonist of Kim Tongni’s tale.
5.3 Paradise Reconsidered in Yi Ch’ŏngjun’s Your Paradise It is similarly Koreans who torment the Sorokdo leprosarium internees depict- ed in Korean writer Yi Ch’ŏngjun’s (이청준, 1939–2008) Tangsindŭl ŭi ch’ŏnguk (당신 들의 천국, Your Paradise, 1976). This novel, on the tenure of leprosari- um director Cho Paekhŏn, is often read as an allegory of life under the Park Chung Hee (Pak Chŏnghŭi, 박정희, 1917–1979) military dictatorship.69 South Korea’s third president, Park seized control in a 1961 coup d’état, declared mar- tial law in 1972, and governed with an iron hand until his assassination in 1979. His reign was marked by rapid industrialization, known as the Miracle on the Han River (한강의 기적, 漢江의 奇蹟), when individual voices and visions for Korea’s future often were suppressed for the greater economic glory of the
(i.e., person with leprosy who publishes professional [나문학, na munhak] leprosy lit- erature) who published both during and after the Japanese colonial period; Yi was in- terned at Yŏsu Aeyangwŏn (여수 애양원, Yŏsu Sanatorium), advocated for reform, was expelled, and ultimately became homeless and died penniless (Jane Kim 2012: 182–183). Another of Yi’s works on leprosy is the postwar Aesaenggŭm (애생금, The Tale of Love and Life, 1947). Han Ha-un (한하운, 韓何雲, 1920–1975) stands out among Korean poets with leprosy. 68 Eunjung Kim points out the difference between Kim Tongni’s 1936 original and his 1947 revision: the former speaks more explicitly about the rumored Japanese policy (2017: 181). 69 The character Cho Paekhŏn is modeled after Cho Ch’angwŏn (조창원), the fourteenth and twentieth director of the Sorokdo leprosarium (Jane Kim 2012: 78).
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70 Park Chung Hee was born in 1917, served in the Japanese army during World War Two, held leadership roles in the South Korean army during the Korean War, and continued his rise through the ranks following the Korean Armistice Agreement of 1953. See Eckert’s two-volume history on Park Chung Hee for background (2016). The phrase “Miracle on the Han River” has been controversial, in part because it does not acknowledge the countless sacrifices of millions of Koreans; many have argued that South Korea’s ascension to a global economic power was not at all “miraculous” and is entirely explicable. 71 The Korean version of Your Paradise identifies this Japanese colonial-era director as Chu Chŏngsu (주정수), as does the Spanish translation, which refers to him as Chongsu Chu. The Japanese translation refers to him as Shū Masahide (周正秀), as do the English and Urdu translations, while the French translation speaks of him as Masahide Aka (Aka is very unusual for a Japanese surname). For clarity, I identify this individual as Dr. Shū. Yi Ch’ŏngjun’s character Dr. Shū is in fact modeled after the Japanese physician Suō Masasue (周防正季, 1885–1942), who worked in Korea starting in 1921 and served as di- rector of Sorokdo from 1933 until his assassination at the hands of a patient nearly a de- cade later. It was under Dr. Suō’s leadership that the Sorokdo leprosarium grew from a facility housing several hundred to one confining several thousand people with leprosy. Dr. Suō was known for his utter ruthlessness and abuse of those under his charge. In a striking change that is most likely accidental, the Urdu translation of Your Paradise, ana- lyzed in greater depth later in this chapter, renders the English sentence “The year the outer road was completed, Shū went to Japan at the request of the Imperial family” (2005: 197) as “The year that the outer road was completed, the year that Shū was killed at the invitation of the royal family” (n.d.: 110). Dr. Suō was in fact celebrated by the royal family.
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(보건과), that in his inaugural address some thirty years ago, Dr. Shū had promised he would transform Sorokdo into “a paradise for patients” (원생들 의 낙원), by which he said he meant “Asia’s best, no the world’s best lepro- sarium, a new hometown [saeroun kohyang, 새로운 고향] for those who have been discarded and expelled from society” (2012: 105). Dr. Shū had then encouraged everyone to join him in building a hometown (고향, kohyang) where all who were being persecuted by their neighbors and families could live in harmony. First a “new hometown” and then simply an (established) “home- town,” the term kohyang is used to indicate just how serious he was about mak- ing Sorokdo a true home, albeit one where, unlike a true hometown, people were not permitted to leave. But this particular irony was lost on the residents. Sanguk remembers how Dr. Shū then cultivated relationships with those living on Sorokdo, emphasizing all the while the need to create a “new paradise” (새 낙토, sae nakt’o). Excited by these plans, people leapt at the opportunity to participate. Bricks were needed, so a brick factory was built, followed by con- struction of new residential buildings. People were pleased to be compensated at last for their work, however minimally, and they were proud to be creating “their own paradise” (자신의 낙원, chasin ŭi nagwŏn). The idea was Dr. Shū’s, but the paradise was theirs. Or so it seemed at first. Construction continued for three years, with amenities added to existing facilities and two new villages built, increasing capacity on the island to four thousand. No one paused to consider the significance of this growth, namely that more people on the island meant more people being exiled from their (actual) hometowns. Instead, everyone apparently delighted in Dr. Shū and celebrated his and their own accomplishments. But the honeymoon eventu- ally came to an end. Emboldened by his success, and somewhat dissatisfied with the new “paradise,” Dr. Shū launched phase two of construction. Sanguk thinks back to how this time, rather than being compensated as before, work- ers were urged to volunteer their labor, and when they gradually began refus- ing to do so, increasingly severe measures were enacted so that conditions re- sembled those of a forced labor camp. Undaunted even after rebellions broke out, Dr. Shū forged on, allowing nothing to stand in the way of “the paradise he had worked out in his head” (그의 마음속에 설계된 낙토, 127). Workers were treated with increasing cruelty, beaten into submission physi- cally and psychologically by Dr. Shū’s brutal deputy Satō, patients now little more than slaves. A particularly sobering emblem of his despotism was the is- land’s new park. Dr. Shū believed that patients needed a comfortable place to enjoy their remaining days, and since the park was for the people, he reasoned, the people should be responsible for its construction. Thus he put even the weak and infirm to work leveling hills, reclaiming muddy ground, and cutting
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The paradise [낙원] that had been constructed was not for the resi- dents…. There was no paradise [낙원] for the patients on Sorokdo. As long as the paradise [낙원] was not for the patients, Sorokdo had no paradise [낙원]…. What is paradise [천국 (ch’ŏn’guk ) 이 무엇이가]? Paradise [천국] wasn’t the result. It has to be secured in the process by the heart. A true paradise [진짜 천국] could be secured only when people searched for it on their own and happily volunteered their ser- vices and had no regrets about volunteering their services for this para- dise [그 천국]. (160)
Paradise, in other words, cannot be imposed; it must be created autonomously, nurtured from the inside. The switch from nagwŏn (낙원) to ch’ŏn’guk (천국) here is important; both terms signify paradise, but the former more in the sense of Eden or Elysium (楽園) and the latter in the sense of the Kingdom of Heaven or the blessed land (天國), the former less sublime than the latter. By replacing nagwŏn with ch’ŏn’guk, the narrator subtly points to the greater worth of those afflicted with Hansen’s disease. Next the egomaniacal Dr. Shū ordered a magnificent statue built in his honor. And the betrayals only contin- ued, with the twentieth of each month designated a “Day of Thanks,” the is- landers forced to gather in the park and pay tribute to both Dr. Shū and his statue.72 Determined not to repeat the mistakes of his predecessors, particularly Dr. Shū, Director Cho begins making reforms in earnest from his first days on So- rokdo. He replaces the slogans hanging on the center wall of the clinic and in the main office with signboards calling for harmony and solidarity, openness and honesty, and mutual cooperation. He also drapes large signs all over the island that declare, “Leprosy can be cured – leprosy is not hereditary” (90),
72 Yi Ch’ŏngjun’s novel speaks frequently of the islanders as being “betrayed” by the director and society, and the director and society as being “betrayed” by the islanders. The Urdu translation deletes or reconfigures many of these references, as discussed below.
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reflecting new understandings of the disease. Notably, the intended audience for these banners is patients, not professional caregivers. But the latter are not let off the hook. Aiming to improve patients’ lives, Director Cho abolishes poli- cies that separate patients from hospital staff; no longer are physicians, nurses, and pharmacists to wear surgical masks and hygienic gloves or to dispense medications with tweezers, and no longer are those with leprosy expected to keep their distance from everyone else, turning their heads and covering their mouths with their hands. Director Cho likewise orders a factory chimney torn down that for many is a painful reminder of the “forced labor and cruel treat- ment of the Shū era” (91). He removes the fence between the personnel zone and the patients’ zone, makes visits between children and their parents more convenient, and takes the first steps in integrating the schools. And he declares that, unlike Dr. Shū, he has absolutely no interest in having a statue of himself erected on the island; his focus is not himself but instead those afflicted with leprosy. Yet Cho Paekhŏn’s failure to understand the needs of the residents of So- rokdo and his misperceptions about their lives and aspirations are evident from the opening pages of Your Paradise. He does not share Dr. Shū’s sadism, but it quickly becomes clear that differences between the two directors are not as great as Director Cho would like to believe. Touring the island with Sanguk not long after his arrival, Director Cho peppers his subordinate with questions; unlike his predecessors, he tells Sanguk that he is eager to learn everything he can about “these peoples’ [the patients’] circumstances” (21). But he succumbs to illusions almost immediately. Mesmerized by the beautiful scenery, he de- clares that the island resembles a huge park; hearing this, and noting that Di- rector Cho is paying little attention to the background information Sanguk is providing about the island’s various villages, Sanguk realizes that the new di- rector has grossly misperceived Sorokdo’s real nature.73 This becomes even clearer when the pair stop to speak with several islanders. Director Cho de- mands to know why so many are escaping, and he becomes increasingly angry when no straight answer is forthcoming. Sanguk eventually explains that peo- ple on the island live dual lives, lives as patients and lives as human beings, and that they have had enough of being patients. Director Cho gradually begins to understand that the island is anything but a paradise for its residents, rhetori- cally asking Sanguk, “If they escape from the island in that way because they want truly to act as human beings [사람 노릇을 하다], doesn’t this mean that on this island they can’t act as human beings? Is this island truly such a
73 As the narrator later points out, Sanguk knows that the landscape the new director so admires is not the scenery of the real island itself (31).
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For him [Min] paradise [낙토] created especially for a group of people with special circumstances could not be paradise…. The director couldn’t possibly have understood [이해하할 리 없었다] those things. He was precisely the person who had tried to make for Han Min a paradise…. He couldn’t perceive [알아치리지 못하다] when and where the be- trayal had begun. He only understood that the island could not yet be regarded as a paradise. So that’s why he promised them a new paradise [새로운 낙토] … [Sanguk mumbled to himself] ‘······When will the di- rector be able to understand the words of the dead······.’ (87–88)
At once repeating the word paradise (here nakt’o [낙토, 樂土], lit., pleasure land) and emphasizing Director Cho’s inability to understand those with whose lives he is charged, the narrator draws attention to the paradox of para- dise: for the residents of Sorokdo, no matter how splendid, a space cannot be a paradise if it is imposed. But again, Director Cho does not try to understand better the needs and desires of the island’s residents. Instead, concerned that too many healthy in- dividuals are stumbling around as though they were the living dead, he decides that those who have been cured should play soccer. Sanguk claims it is cruel to force people without fingers or toes – a common side effect of leprosy – to play
74 The Korean reads, “엉뚱한 방향으로 빗나가고 있다” (62). 75 Unlike those who mythologize the island, Han Min has no audience on the mainland for his writing; every piece he submits for publication is rejected.
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76 Repeating the word “hometown” (고향, kohyang) on these pages emphasizes all that has been lost and points to the near impossibility of its recovery.
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Dr. Shū’s expansion program, Director Cho’s land reclamation begins auspi- ciously. But before long both morale and efficiency tumble, and progress occurs only in fits and starts. The embankment eventually is completed, yet before long it is destroyed by a storm. Although the weather is the immediate culprit, everyone blames Director Cho, and it is only because mainlanders are threatening to take charge of the reclamation that the island residents go back to work. Yet their efforts again are swamped by the ocean. Conditions on the island become brutal, with Director Cho increasingly resembling Dr. Shū in his mania to finish the project despite the human costs. The parallels are not lost on the residents, who again evoke Sorokdo’s troubled history. Eventually, Di- rector Cho’s own turbulent tenure comes to an end, and he leaves the island.77 Your Paradise exposes the indignities not only of explicit prejudices and dis- crimination against individuals with leprosy but also of the more implicit in- justices inflicted on them that together impede healing and attaining wellbe- ing. Residents of Sorokdo have been all but left for dead by Korean society and treated as though they were (nearly) dead by a succession of administrators who speak of creating a “paradise” for them but do not talk with these indi- viduals directly about their needs, desires, and hopes. Instead, the administra- tors plunge most of them into a living hell that in some cases is worse than they would find on the outside. Director Cho is never quite as brutal as his colonial predecessors, but at certain points he comes close. Your Paradise reveals the fuel of abuse to be not necessarily outright misanthropy, which tends to be fairly obvious, but instead imposing on others one’s own vision of who they are and how they should live, without seeing them as fully human and working with them to create spaces hospitable to all.
5.4 Betrayal and the Urdu Translation of Your Paradise Translations of literature regularly transfigure texts as they posit new direc- tions for understanding individual and cultural discourses. Similarly, they contribute to the representation of stigmatized groups and play important roles in the performance and performativity of identity (Bermann and Porter
77 Director Cho returns to the island near the end of Your Paradise as a civilian and encour- ages the wedding between a former patient (Haewŏn) and a woman believed to be with- out the disease (Miyŏn) but whose parents, unknown to her, were in fact patients. When asked whether he considered depicting Miyŏn as a “purely healthy person,” Yi Ch’ŏngjun replied that, as a novelist, this “would have been too naïve, too romantic, or too fantastic a conclusion,” given that such relationships were unthinkable, but had he been a politi- cian, he would have done so (Eunjung Kim 2017: 190).
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2014: 9).78 This is true of the English, French, Japanese, Spanish, and particu- larly Urdu versions of Your Paradise, which market themselves as doing every- thing from reinforcing an allegorical reading of the novel (French and Span- ish), to painting a more sympathetic portrait of Director Cho (English), to accentuating the abuse to which the residents of Sorokdo have been subjected (Japanese and Urdu).79 Especially noteworthy is the Urdu translation, a re- translation of the English translation.
78 Bermann and Porter’s remarks concerning “other” cultures, gendered and “queer” identi- ties, and the relation of migration and sexuality studies to translation studies apply as well to narratives on disease and illness experiences (2014). 79 The blurb on the Spanish translation’s inside flap opens, “La presente novela, Paraíso cer- cado, expone la idea de que ninguna dictadura está justificada” (This novel, Enclosed Paradise, exposes the idea that no dictatorship is justifiable). The publishers continue by explaining some of the background of the text, how Director Cho arrives on Sorokdo with the illusion of turning it into a paradise through a variety of reforms, but that the island- ers resent having been expelled from the mainland, that for them Director Cho is a dicta- tor because his philanthropy is not undergirded by love. The blurb concludes, “La isla de Sorokdo es un trasunto de Corea del Sur bajo la dictadura que privara de libertad a in- telectuales y jóvenes durante las décadas de 1960 y 1970” (The island of Sorokdo is an al- legory of South Korea under the dictatorship that in the 1960s and 1970s deprived intel- lectuals and the young of freedom). Paratexts thus establish Paraíso cercado as a novel concerned with despotism and its various guises, particularly as they affected South Ko- rea in the decades following the Korean War. In their blurb, the publishers of the French translation – Ce paradis qui est le vôtre (This Paradise Is Yours) – comment that for the residents of the “island of the dead,” the new director has prescribed an exhausting task (une tâche harassante). They also remark that in the present text, Yi Ch’ŏngjun “revient ici avec un grand roman qui éclaire les démocraties comme les dictatures d’une lumière singulièrment indiscrete, habile à dévoiler et confondre ces figures éternelles de l’histoire: le tyran, l’esclave, et l’humaniste” (returns here with a great novel that illuminates democracies as dictatorships with a re- markably indiscreet light, skillful at revealing and conflating the eternal figures of history: the tyrant, the slave, and the humanist). In contrast, the English paratexts depict Your Paradise not primarily as an allegory but instead as a novel about an actual leprosarium. The cover of the English translation fea- tures the photograph of an elderly Asian woman turned forty-five degrees from the cam- era and covering her mouth, as those on Sorokdo were expected to do before Director Cho changed the policy. The blurb on the back of the English version announces Your Paradise as telling “the story of a leper-colony, where the lepers are outwardly treated with the greatest of kindness,” and that the new director attempts to reintegrate the leprosy com- munity with the world outside the leprosarium but that he encounters great resistance from the patients themselves, who “prefer the protection and organization of the island. The lepers want nothing to do with modern-day Korea and its numerous problems.” The English blurb of Your Paradise thus sets up a sharp dichotomy between the island and the mainland, erroneously painting Director Cho as attempting to reintegrate the two. Fur- thermore, with the exception of its front cover, the jacket’s summary of the novel gives no
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Of these five translations of Yi Ch’ŏngjun’s novel, the Urdu version – published by Lahore’s Mashal Books and titled Āp kī jannat ( , Your Paradise, n.d.) – presents itself as the most engaged with how society treats people with leprosy.80 Duplicating Mashal’s online advertisement of Āp kī jannat, the book’s back blurb opens by asking readers: “Should the physical- ly or mentally ill live apart from the society of healthy humans or not? Should they live and interact with other humans?” This content thus immedi- ately divides people into categories: “physically or mentally ill humans” ( , zehenī yā jismānī t̤aur par bīmār insān) on the one hand and “healthy humans” ( , ṣiḥat mand insān) on the oth- er.81 The blurb notes that Your Paradise “attempts an answer to this question” and states that people with leprosy have been contained on Sorokdo and not permitted to leave, even after they have completed their medical treatment. The statement baits readers by going on to ask, “What is the final result of this struggle?” It then proclaims, “This novel is considered to be a masterpiece of Korean literature.” So not only will readers be given the opportunity to con- sider how best society should treat those who have been afflicted by disease, not an uncontroversial question in Pakistan by any measure, but they also will have access to one of Korea’s greatest literary creations.82
indication of the brutality of life on Sorokdo. On the contrary, it suggests that the island is at the very least a nascent paradise. The Japanese version of Your Paradise advertises itself on its obi as taking place on Sorokdo and as based on a true story. On the back cover, the editors provide background information on the history of the leprosarium, including that it was established by the Japanese during the colonial period. 80 See Thornber (2018) for more on Mashal’s fiction list and how its numerous Urdu transla- tions of non-Western literatures have contributed to regulating power relations and rene- gotiating hierarchies among various communities across Asia. 81 Thank you to Daniel Majchrowicz for outlining the differences between the Urdu and English translations for this and other Urdu-language texts discussed in this book, includ- ing the varied translations of “betrayal” (discussed below); for providing many of the Urdu translations in this book; and for entering most of the Urdu script in this book. Thank you too to Nicolas Roth for Urdu translations, romanizations, and script entry throughout this book. 82 Elsewhere, the Urdu version similarly advertises Your Paradise as “Korea’s masterpiece novel” ( , Kōriyā kā shāhkār naval). Leprosy in Pakistan has a troubled history, and the disease was not brought under control until 1996. For more on the work of missionaries and leprosy in Pakistan, see Syed Rafique Ahmed (1986), Mutaher (2004), Pfau (2010), Pflughaupt (2004). Most notable is the figure of Dr. Ruth Katherina Martha Pfau (1929–2017), a German nun who beginning
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More important are the changes the Urdu translation makes to the narrative of Your Paradise itself, changes that draw attention to the suffering inflicted by social ostracism. Given the length of Your Paradise, it is not at all surprising that differences abound between its Urdu and English versions, not to mention its English and Korean iterations.83 But the Urdu translation goes out of its way to accentuate the betrayal of persons with leprosy. References to betrayal – paeban (배반) – reverberate through Your Para- dise; the fourth and fifth sections of the novel are titled “Betrayal 1” and “Be- trayal 2,” respectively. Residents of Sorokdo, whether they have been cured completely or are in dire need of healthcare, frequently are described as having been betrayed by island administrators and by society more generally. Like- wise, residents themselves are said to have betrayed those entrusted with their care, including Director Cho, who regularly claims he has been betrayed by the islanders and particularly by those who have escaped the island. Additionally, on various occasions, the islanders, island administrators, and society all are
in 1960 devoted her life to the care of leprosy patients in Pakistan and who was pivotal in mitigating the stigma attached to leprosy there. 83 Some of the smaller changes appear to result simply from translator error, with individual words changed, seemingly random words or sentences omitted here and there, and the modifications insignificant. To give several examples, the Urdu renders six years as six months (the time it took Han Min to be cured), seven villages as twelve villages (the num- ber of communities on the island), and three bacteriological exams as a single bacterio- logical test (the number of tests Han Min has taken to determine whether his leprosy has been cured). As with many Urdu translations of East Asian literary works, Āp kī jannat is also more hesitant than Your Paradise to speak about intimate relations between the sexes. On many occasions Āp kī jannat flattens the language of its English source, providing a synopsis rather than a translation. Beginning with chapter 25, nearly every other para- graph is reduced to half its former size. Unlike the Spanish and French translations, which condense considerably their Korean source throughout, the Urdu translation passes over very little of its English source until the final hundred pages. In fact, on its copyright page, the French version asserts that this text differs in several respects from the original; changes were made, it declares, by the translators in conjunction with the author Yi Ch’ǒngjun. One exception to the Urdu’s greater resemblance to the Korean, at least in its earlier sections, occurs in the fifth chapter, where the translator deletes the three para- graphs leading up to Director Cho’s inaugural address, in other words, the narrator’s de- scription of the utter silence with which the island’s new leader is greeted and how the director in turn is so intimidated that he feels suffocated by the thousands of quiet eyes that are boring into him. Similarly, the Urdu translation omits a sentence in the seventh chapter where the narrator describes the islanders’ silence as more threatening than any opposition (Eng. 2005: 112; Ur. n.d.: 64). Also noteworthy is the Urdu translation’s omission in the sixth chapter of a paragraph on the story Han Min allegedly was writing.
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84 The term daghābāzī ( , betrayal, double-crossing) comes closest to the English word “betrayal,” yet it appears only very infrequently in Āp kī jannat.
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85 Padilla was best known as a member of the Crack Generation (Generación del Crack), a group of young Mexican novelists objecting to the bestsellerismo (or Oprah-ism) of the publishing industry as well as the attempt to ghettoize Mexican and Latin American lit- erature (Ehrenreich 2010). “Amends in Halak-Proot” appears in Padilla’s 2001 collection Las Antípodas y el siglo (Antipodes and the Century).
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86 Individuals are not confined at Halak-Proot against their will, but for many the alternative – rejoining military campaigns in the Dutch East Indies – is even more unacceptable.
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5.5 Leprosaria as Refuge – Ola Rotimi’s Hopes of the Living Dead Most of the narratives discussed in this chapter implicate leprosaria, depicting them as the ultimate sites of betrayal of people who are at once society’s most feared and most vulnerable. Providing a radically different perspective on these spaces is the leading Nigerian playwright Ola Rotimi’s (1938–2000) Hopes of the Living Dead: A Drama of Struggle (1985). Whereas much twentieth and twenty-first-century writing on leprosaria focuses on the abuse that takes place within these spaces, the characters in Rotimi’s multilingual drama argue that a new leprosarium is their only chance for survival, and they fight for the con- struction of such a facility. Rotimi’s play, based on the struggles surrounding the Uzuakoli, Nigeria settlement, underscores the devastation of social stigmas against those with leprosy. Hopes of the Living Dead features leprosy patients housed in a special ward of Port Harcourt General Hospital who are being forced out by that hospital’s “normal” patients and who are so distraught at the thought of being exiled back to their natal homes – an exile they believe to be a certain death sentence – they implore the authorities to establish a separate settlement for them.88 Hopes of the Living Dead tells the story of the Nigeria “Lepers’ Rebellion” and prominently features its leader, Ikoli Harcourt Whyte (1905–1977), who went on to become an acclaimed composer. Of Kalabari par- entage, Harcourt Whyte was orphaned in 1919, the same year he was diagnosed with leprosy.89 His siblings sent him to the Port Harcourt General Hospital,
87 The narrator refers several times to Talbot’s mental instability. 88 Rotimi was born of Yoruba and Ijo parentage and was educated in Nigeria and the United States. His most famous plays “adapt traditional African theater techniques within a mod- ern context” (Okafor 1990: 29). In addition to writing plays, Rotimi also acted, choreo- graphed, designed, and directed. 89 The Kalabari are a tribe of Ijaw people located in Nigeria’s Niger Delta region.
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90 Davey was based at the Uzuakoli leprosy settlement between 1937 and 1958. As Manton describes, “In his 21 years in Nigeria, he witnessed, and was in part responsible for, the development of an extensive missionary- and government-funded leprosy control programme across Eastern Nigeria” (2011: 129). Davey was also responsible for renaming leprosy “colonies” as leprosy “settlements” (Orji 2013). 91 The one exception is missing fingers, which Hopes of the Living Dead depicts as hamper- ing attempts to shoot the authorities as well as to build the settlement. In one skirmish, a leprosy patient wails out, “Aondo! Doo u or nana lu a a ve manahor, avec. [Gods! A man needs hands with fingers on them!]” (61–62).
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But not only are these villages scattered across the countryside; they are openly hostile to people with leprosy. The patients know that being forced to return “home” is equivalent to being sentenced to death. So Harcourt Whyte asks the government to provide them with a place they can call their own, “where we can keep ourselves to ourselves, feed ourselves, work for ourselves” (45). He demands that the authorities “give us a chance to live like human be- ings” (47), which for him is a new hospital at Uzuakoli (100). The struggle, Har- court Whyte argues, has implications far beyond the leprosy community: “We all are part of this land. We are not fighting the people. We are fighting for the people. We are fighting for the simple things which everybody wants. The strong or the sick; Fulani or Ijo; man or woman; Yoruba or Ibibio; old and young; Hausa or Urhobo; rich or poor; Kanuri or Ibo; everybody wants one thing in life,” namely to be able to sleep at night in peace and to wake up to sufficient food, a comfortable home, and a fulfilling job (56). And even when, after considerable effort and a temporary stay at the Infectious Diseases Hospi- tal in Port Harcourt, the leprosy patients are finally promised that, as request- ed, they will be transferred to the new leprosy hospital at Uzuakoli and receive training to become attendants and nurses in this hospital, Harcourt Whyte cautions, “Now we’ve won our freedom. But this is only the beginning of a new struggle, my people … Together, then, we move. If not for our own gains, then for the gains of our saplings to come” (111). Referencing eight African ethnic groups in the passage cited above, and incorporating passages in numerous African languages throughout the play itself – from Hausa to Ibibio, Isan, Igbo, Kalabari, Okrika, Tiv, and Yoruba – Rotimi’s Hopes of the Living Dead underscores not only the diversity of peoples stricken with leprosy but also the ease with which communities can be formed across borders.92 In fact, immediately before listing the cast, Rotimi inserts a heading “Use of Different Languages,” under which he states that although spe- cific languages are given to the characters in the play, the producer/director is not bound by these allocations and that “any character may be assigned any language … What is important is for the languages spoken to reflect the cultural spread and linguistic diversity of the nation where it is being produced” (Davey 1988: vi). Here the barriers traversed are cultural and linguistic. In the future, they might also become the barriers of health, those between the “strong” and the “sick,” as Harcourt Whyte describes above and as the narrator of Yi Ch’ŏngjun’s Your Paradise depicts at the end of his novel. Like Your Paradise,
92 The primary language of Hopes of the Living Dead is English, with English translations provided, sometimes just for the audience and sometimes also for the characters, for most of the text in non-English languages.
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Rotimi’s Hopes of the Living Dead is a sober reminder of the destructive power of stigmas against disease, stigmas that are fueled by and serve as fuel for struc- tural violence. The patients in Rotimi’s Hopes of the Living Dead risk dying not of leprosy or its many possible complications but instead of the abuse triggered by stigma, of being cast out into what they call the “blooming bush.”93 Literature that engages with leprosy makes clear the devastation that social stigmas against the disease have wreaked around the world for centuries, and such writings frequently portray the social abuse of people with the disease as having been more brutal, as taking an even greater toll, than the physical dam- age created by the Mycobacterium leprae bacillus itself. Hansen’s disease has been completely curable for more than half a century. And yet fears of the “liv- ing dead” persist around the world – popular culture globally is increasingly overrun with the figure of the zombie, a “reanimated corpse intent on eating human flesh” (Drezner 2014: 8), also understood as “a relentlessly aggressive, reanimated human corpse driven by a biological infection” (Mogk 2011: 6).94 Particularly disturbing is that the zombie’s features eerily reverberate with the most disfiguring physical manifestations of leprosy and with the most damag- ing stigmas against people with the disease, especially their cannibalistic ten- dencies. Zombies are generally not direct metaphors for people with leprosy, as they have been for more widespread contemporary diseases, including Al- zheimer’s disease, as discussed in the entr’acte.95 But the fact that popular
93 Other creative works on leprosy depict the combination of degenerative disease and per- sistent stigma against this disease as especially lethal. One example is Portuguese physician-writer Miguel Torga’s (Adolfo Correia da Rocha, 1907–1995) tale “O leproso” (The Leper), included in Novos contos da montanha (New Tales of the Mountain, 1944), a collection of short stories set in Torga’s homeland of Trás-os-Montes, in northeastern Por- tugal. “Leper” centers on a man named Julião, who after being called “leper” by a waitress because of the still undiagnosed red nodules on his face, is increasingly tormented by the villagers in his hometown of Loivos. Even as he goes out of his way to humanize Julião, the narrator spares little in describing both the physical devastation caused by leprosy, devas- tation that progressively worsens despite Julião’s repeated attempts to find a cure, and the social consequences of having leprosy, including the devastating stigma (labéu infaman- te, lit. infamous label, 68) of the disease. Ultimately, the people of Loivos – believing that Julião has attempted to infect them with leprosy by reselling olive oil in which he had bathed – set fire to the hillside over which he is attempting to escape and burn him to death, until all that is left of him is “um grande e negro carvão, tal e qual como o tronco de um sobreiro que tivesse ardido” (a large, black piece of coal akin to the trunk of a scorched cork tree, 74). 94 Drezner (2014) recaps the increasing presence of the zombie figure in popular culture globally. 95 Similarly, in her study of plague legacies, Jennifer Cooke examines how the zombie genre engages with human fears of contagion and death (2009: 163–184).
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culture for the most part does not allow for coexistence of humans and zombies – most zombie stories wrap up either with the elimination/subjuga- tion of the entire zombie population or with the eradication of the human population (Drezner 2014: 8) – reinforces what the examples of global litera- ture discussed in this chapter reveal: the desperate need to replace current structures of stigma and fear with interventions and initiatives that will create communities of care to allow for healing and enable wellbeing. Global literature on other highly stigmatized conditions, including hiv/ aids, is just as insistent in this regard, depicting stigmas and fears of stigmas as deterring advocacy, activism, and education; deferring responsibility; blocking testing and access to healthcare; and ultimately destroying land- scapes both human and nonhuman. By exposing the devastating impact preju- dicial attitudes and abusive behaviors have had on people with stigmatized conditions, global literature argues that reducing if not eliminating stigma must become more of a healthcare and global health priority.
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