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100 The Jus­ tice of Lis­ ten­ ing Jap­ a­ nese Lep­ rosy Seg­ re­ ga­ tion mi­ chio miy­ a­ saka Human ­ Rights Abuse and­ Japan’s Lep­ rosy Seg­ re­ ga­ tion Human ­ rights re­ lated to ill­ ness are quite often counter­ in­ tui­ tive. There is a need to care­ fully ex­ am­ ine ­ whether the stig­ ma­ ti­ za­ tion of pa­ tients in cer­ tain con­ texts con­ sti­ tutes an un­ jus­ tifi­ able human ­ rights abuse, or ­ whether some treat­ ments that pa­ tients would deem pain­ ful or even abu­ sive can be le­ git­ i­ mate in such circum­ stances. Peo­ ple suf­ fer­ ing from lep­ rosy—or ­ Hansen’s dis­ ease—have been stig­ ma­ tized since an­ cient times, be­ cause, of ­ course, for cen­ tu­ ries no cure ex­ isted. How­ ever, there is in­ suf­ fi­ cient under­ stand­ ing of how this ­ stigma has con­ tin­ ued to tram­ ple human ­ rights in mod­ ern times. With re­ gard to in­ fec­ tious dis­ eases, such as lep­ rosy, tu­ ber­ cu­ lo­ sis, se­ vere acute res­ pir­ a­ tory syn­ drome, and in­ fluenza, the med­ i­ cal and po­ lit­ i­ cal de­ bate has con­ tin­ ued to focus on the le­ git­ i­ macy of ­ liberty-limiting inter­ ven­ tions, es­ pe­ cially pa­ tient iso­ la­ tion. Al­ though iso­ lat­ ing pa­ tients with in­ fec­ tious dis­ eases is not uni­ ver­ sally con­ sid­ ered wrong­ ful con­ duct from a ­ medico-ethical per­ spec­ tive, ­ forced iso­ la­ tion can con­ sti­ tute a human ­ rights abuse when it is ex­ ces­ sive and ar­ bi­ trary.1­ Japan’s lep­ rosy con­ trol pol­ icy ex­ em­ plifies this type of abuse, but it took sev­ eral ­ decades and law­ suits­ against the coun­ try be­ fore the pol­ icy it­ self was re­ garded as a human ­ rights abuse. One way to eval­ u­ ate human ­ rights ­ abuses sur­ round­ ing ill­ ness fo­ cuses on the “lived ex­ pe­ ri­ ences” of af­ flicted pa­ tients. Lived ex­ pe­ ri­ ences often in­ clude de­ tails about the se­ ver­ ity of their suf­ fer­ ing ­ within a ­ unique set of circum­ stances to which ­ healthy peo­ ple are ­ poorly sen­ si­ tized. This essay will ex­ plore how peo­ ple with lep­ rosy in Japan de­ vel­ oped a ­ unique ­ life-story-based lit­ er­ a­ ture, which ­ called The Justice of Listening 101 on em­ pa­ thetic read­ ers and even­ tu­ ally won them major legal “rec­ og­ ni­ tion.” This story is rel­ a­ tively lit­ tle known, and thus the first few pages will re­ count the his­ tory of their treat­ ment, in­ clud­ ing a con­ sid­ er­ a­ tion of the dif­ fi­ cult po­ si­ tion that med­ i­ cal prac­ ti­ tion­ ers and pol­ icy mak­ ers also faced in man­ ag­ ing not only treat­ ment but also pub­ lic opin­ ion. Life­ time Iso­ la­ tion In 2001 the Ku­ ma­ moto Dis­ trict Court ­ handed down a land­ mark de­ ci­ sion, rul­ ing that the iso­ la­ tion pol­ icy and its legal basis, the Lep­ rosy Pre­ ven­ tion Law, vi­ o­ lated the fun­ da­ men­ tal human ­ rights guar­ an­ teed in the Con­ sti­ tu­ tion of Japan. The fol­ low­ ing year, I made my first visit to the Na­ tional Lep­ ro­ sar­ ium Kuryu­ Rakusen-en. This lep­ ro­ sar­ ium is lo­ cated on a beau­ ti­ ful pla­ teau with quiet, green sur­ round­ ings. My im­ pres­ sion cor­ re­ sponded with the world­ view pre­ sented in ­ Thomas ­ Mann’s The Magic Moun­ tain. In ­ Mann’s story, the char­ ac­ ter Hans Cas­ torp vis­ its a tu­ ber­ cu­ lo­ sis san­ a­ tor­ ium where his cou­ sin is being ­ treated. This high­ land san­ a­ tor­ ium is ex­ tremely dif­ fer­ ent from the out­ side world. Hans even­ tu­ ally is in­ fected and be­ comes a res­ i­ dent of the san­ a­ tor­ ium. Like many other pa­ tients, he is un­ shaken by his fate and ac­ cepts life in the iso­ lated world in which he finds him­ self. Sim­ i­ larly, the res­ i...

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