-
The Justice of Listening: Japanese Leprosy Segregation - Michio Miyasaka
- University of Wisconsin Press
- Chapter
- Additional Information
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...