苦難と偏見で綴られた韓国のハンセン病患者~「小鹿島病院」100年にあたって

1916年、朝鮮総督府が小鹿島慈恵医院を設立して以来、小鹿島は、長い間、国家がハンセン病を管理する象徴的な空間だった。
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小鹿島。2007年撮影

筆者は、最近3年間、韓国のハンセン病患者治療施設「小鹿島(ソロクト)病院100年史」の執筆のため、小鹿島を頻繁に訪問した。数年前までは、小鹿島に行く唯一の手段は、小さな船だけだった。その船を待ちながら、一度島に入ると簡単には出られない患者の気持ちを推測してみたりもした。しかし、2009年に陸地と島を結ぶ橋ができたおかげで、このような物理的・心理的な準備もなく、すぐに島に入ることができ、小鹿島に行くのは以前ほど大変ではなくなった。社会と島をつなぐ物理的な橋が、小鹿島の住民と外部の住民との心理的な距離も縮めたのではないかと思う。

もう一つの変化は、外部との接触に消極的で、自分の意見を話すことに慎重だった小鹿島の住民たちの態度が変わったということだ。今の住民は外部の人との接触を徐々に、自然に受け入れている。また、国立小鹿島病院100周年記念事業に、自分たちの病気、隔離、差別の経験が反映されるように、準備に積極的に参加している。しかし、こうした肯定的な変化が起きるまでは、100年近い時間が必要だった。

■偏見と苦痛で綴られたハンセン病100年の歴史

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小鹿島慈恵医院

1916年、朝鮮総督府が全羅道・高興(コフン)の端に位置する小鹿島に、小鹿島慈恵医院(現・国立小鹿島病院)を設立して以来、小鹿島は、長い間、国家がハンセン病を管理する象徴的な空間だった。ハンセン病は、細菌による慢性感染症で、初期に治療しないと末端神経などが損傷されて障害が残る。この過程で身体に変形が生じるため、患者は長い間、差別の対象となった。小鹿島病院の立場から100年を振り返るなら、韓国はすでに1992年に「ハンセン病退治」を宣言した、ハンセン病撲滅政策の模範となる国だ。一部では、「小鹿島病院は公共医療の模範であり未来だ」という賛辞が送られた。

しかし、ハンセン病患者の立場から見れば、その100年は、血と涙に染まった苦難の時だった。

小鹿島は「医療と公衆衛生の発展が、個人の生活の質の改善につながる」という近代の常識が果たして正しいのか、私たちに問いかける。フランスの哲学者ミシェル・フーコーは「狂気の歴史」で、ハンセン病患者を収容していた空間が精神病患者の収容場所に置き換えられることで、ヨーロッパの近代が始まったと主張したが、植民地国家ではむしろ、近代の始まりとともにハンセン病患者の収容施設が造られ始めた。すなわち、西洋の近代が理性の確立によって始まったのなら、植民地における近代は、病気と身体の統制によって始まったと言える。

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小鹿島に保存されている「断種台」

例えば20世紀初頭、アメリカはフィリピンのクリオン(Culion)に、イギリスはマレーシアのスンガイ(Sungai)とインドに数十カ所のハンセン病患者隔離施設を造り、日本は日本本土と朝鮮の小鹿島、そして台湾の楽生院にハンセン病患者の隔離施設を設置した。帝国主義諸国が植民地にハンセン病患者の隔離施設を造るのは、普遍的な現象だった。

このように、植民地国家における近代医療制度は、帝国主義、人種差別主義、または帝国になりたいという欲望と結合して姿を現した。少なくともハンセン病患者にとって植民地の近代医療は、生活の質の改善とは何の関係もなかった。植民地時代の小鹿島病院は、少しずつ治療と研究の機能を備え始めてはいたものの、主な機能は引き続き隔離だった。病院は、患者たちを効果的に管理するために厳格な規律を強要し、強制労働をさせ、抵抗する患者は監禁したり、断種手術を施したりした。医学の発展という名目の下、検証されていない薬剤の臨床試験も行われたという。

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小鹿島に今も残る「監禁室」の跡。ハンセン病患者の隔離政策は1963年に廃止されたが、島の住民への差別と偏見は続いた。1948年には、病院職員と警備員によって84人の患者が虐殺される事件などがあった

もちろん、伝統的な社会でもハンセン病患者への差別と偏見が存在したが、それは通常、近代的な医療知識によって正当化され、普遍化された。同時に、そのシステムの中で、ハンセン病患者は、治療を受けて隔離されなければならない、そしてその恩恵に感謝しなければならない、天皇の「臣民」とされた。帝国と近代医学がハンセン病患者の隔離に奮闘するのを見て、一般の人々の偏見と差別は正当化され、強化された。その最終的な結果が解放(終戦)後、朝鮮戦争(1950~1953年)を経た社会混乱期に全国各地で起きた、地域住民によるハンセン病患者の虐殺事件だった。患者への無知と恐怖心と敵意が合理的なものとされ、虐殺を正当化したのだ。

隔離され、治療されるべき「臣民」だったハンセン病患者は解放後、国家によって新たなアイデンティティを与えられる。新薬の開発で病気が治った人が出始めると、元患者たちの社会復帰が大きな社会問題となった。国家は、管理の負担を軽減するため、偏見でもはや故郷に帰れない元患者を、へんぴな場所に送って定住させようとした。もはや元患者たちは、経済的自立と「社会浄化」をなしとげなければならない近代的国民と呼ばれた。「社会浄化」とは、ハンセン病患者が社会に脅威となる浮浪生活をやめ、勤勉に労働する生活を送らなければならないという意味だった。こうした視点はハンセン病患者たちに強く内面化され、患者たちは経済的自立だけが自分たちへの偏見を解消する道だと信じた。また、社会の反感を抑え、政府に認められるために、ハンセン病患者の団体は、自ら浮浪生活を送るハンセン病患者を捕まえて小鹿島に送った。

■新しい時代精神を考える契機に

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国立小鹿島病院の患者。2013年撮影

しかし患者たちが、これらの抑圧にひたすら耐えていたわけではない。植民地時代、小鹿島の患者だったイ・チュンサンは、抑圧的な統制と過酷な強制労働に抵抗して、当時の院長だった周防正秀を殺害した。さらに、解放後のハンセン病患者は自助グループを結成して、経済的自立のために奮闘した。その結果、世界で唯一、経済的に成功したハンセン病患者の集団が形成された。患者たちはこうしてできた経済的な富と経験をもとに、1994年に世界ハンセン病患者連合会となるIDEA(Integration、Dignity、and Economic Advancement)協会の設立を主導し、世界のハンセン病患者に韓国の「定着村」と呼ばれる経済的自立モデルを伝授しようと努力した。

しかし、病気の治癒や、経済的自立にもかかわらず、偏見と差別は簡単に消えなかった。その結果、患者たちは社会に堂々と名乗り出ることができず、社会は患者たちが静かに消えるのを待っていた。元患者たちが自らの経験が不当であり、それは人権の問題だと思うようになったのは、民主主義が発展して人権に関する言論の自由が拡大した2000年代に入ってからだ。最初は日本政府を相手に、植民地時代の小鹿島でハンセン病患者に対する隔離政策の不当性を問う訴訟だった。この訴訟を通じて韓国の元患者たちは、日本と台湾の元患者と連帯する経験をして、隔離が不当だという確信を持った。また、2001年に発足した国家人権委員会は、ハンセン病患者の人権問題に関心を持ち、2005年に初めてハンセン病患者の人権実態調査を実施した。調査結果を基に、後にハンセン病患者にたいする虐殺事件の真相究明と、被害者の生活支援に関する法律が施行され、現在は小鹿島で強行された断種・中絶手術の被害者による訴訟が進行中だ。

個人が時代の流れに逆らうことは容易でない。時代の精神だった近代医学、開発主義の前に立った個人はなおさらそうだ。特に、それが国家と社会に与える過失が明らかなとき、私たちはその副作用について合理的批判すらできず、当然のことと受け入れなければならない。この時、「神話」が誕生し、時代の精神は宗教になる。ハンセン病とハンセン病患者の歴史は、にもかかわらず、確固たるものを絶えず反省し、批判することを要求する。そういう意味で小鹿島は、過去の遺物として残されるのではなく、新しいインスピレーションを呼び起こす空間でなければならない。幸いなことに、100周年を迎えた国立小鹿島病院は、これらの役割を実行しようと努力している。「小鹿島病院100年史」の発刊、100周年記念行事の一環となる国際学術会議とハンセン病博物館のオープンは、こうした批判的な視点を盛り込んでいる。次の100年には、小鹿島が神話を破るインスピレーションを与える場所として存在することを期待している。

この記事はハフポスト韓国版に掲載されたものを翻訳しました。

韓国のハンセン病患者施設「国立小鹿島病院」
South Korea Leprosy Island(01 of26)
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In this Nov. 4, 2013 photo, a villager strolls near houses on Sorok Island, South Korea. The island was established as a leprosarium in 1916 by the Japanese during their 35-year colonial rule of the Korean Peninsula. Despite the misery many say they endured here, dozens are returning each year, partly for the free medical care, food and housing offered to former sufferers of the disease. But the onetime place of exile has also become a peaceful refuge for many after years of discrimination and hardship, the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(02 of26)
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In this Nov. 4, 2013 photo, a nurse, left, helps a former leprosy patient at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
APTOPIX South Korea Leprosy Island(03 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient lies in a bed at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(04 of26)
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In this Nov. 4, 2013 photo, former South Korean leprosy patients sit on a bench at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(05 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient sits on a bed at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(06 of26)
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In this Nov. 4, 2013 photo, a nurse attends to a former leprosy patient at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(07 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient watches a television at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(08 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient drinks water at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(09 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient lies in a bed at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(10 of26)
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In this Nov. 4, 2013 photo, a nurse helps former leprosy patients at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(11 of26)
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In this Nov. 4, 2013 photo, a former South Korean leprosy patient prays before lunch at Sorokdo National Hospital on Sorok Island, South Korea. The island, once known as a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions, has become a peaceful refuge for many after years of discrimination and hardship and the only place they feel at home. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(12 of26)
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This Nov. 4, 2013 photo, shows detention rooms at the former rehabilitation center for leprosy patients on Sorok Island, South Korea. South Korea abolished its anti-leprosy segregation policy in 1963, but rights abuses on the island continued for decades. Recent government investigations confirmed a 1948 slaughter of 84 leprosy patients by hospital workers and security officers over a management dispute. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(13 of26)
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In this Nov. 4, 2013 photo, a sterilization table stands in an autopsy lab at a former rehabilitation center for leprosy patients on Sorok Island, South Korea. South Korea abolished its anti-leprosy segregation policy in 1963, but rights abuses on the island continued for decades. Recent government investigations confirmed a 1948 slaughter of 84 leprosy patients by hospital workers and security officers over a management dispute. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(14 of26)
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This Nov. 4, 2013 photo, shows a detention room for leprosy patients at a former rehabilitation center on Sorok Island, South Korea. South Korea abolished its anti-leprosy segregation policy in 1963, but rights abuses on the island continued for decades. Recent government investigations confirmed a 1948 slaughter of 84 leprosy patients by hospital workers and security officers over a management dispute. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(15 of26)
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In this Nov. 4, 2013 photo, Yu Myung-sun, 61, a South Korean leprosy patient, speaks during an interview at Sorokdo National Hospital on Sorok Island, South Korea. Yu, who lived on Sorok for six years until 1974, returned in 2008 after living at so-called leper colony near Seoul. People outside the village \"wouldn\'t even look at me ... restaurants wouldn\'t sell meals to us.\" âPeople on Sorok Island make me feel at ease,â said Yu. Starting about a decade ago, the number of returning former patients began gradually increasing. Over the past few years, about 70 people, mostly former residents, have resettled on the island each year. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(16 of26)
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In this Nov. 4, 2013 photo, Kang Sun Bong, a former leprosy sufferer, walks outside his house on Sorok Island, South Korea. Kang\'s savings wiped out by cancer treatment, the 74-year-old now hopes to live the rest of his life with hundreds of other former patients on Sorok Island, which sits off South Koreaâs southwestern tip and has become a mini-welfare state. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(17 of26)
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In this Nov. 4, 2013 photo, Kang Sun Bong, 74, a former leprosy sufferer, speaks during an interview on Sorok Island, South Korea. Kang once considered this tiny island a âhell on earth,â a place where hospital workers beat the leprosy patients exiled on the island and forced them into harsh labor, sterilizations and abortions. But three years ago, old, sick and broke, Kang returned to the place he\'d been banished with his mother decades ago. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(18 of26)
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In this Nov. 4, 2013 photo, South Korean leper Kang Chang-suk types a message on his smartphone during an interview on Sorok Island, South Korea. Kang, who lived on the island for six years in the 1980s before returning in 2009, said men suffering from leprosy were still required to get sterilized before they got married at least until the 1980s. He said hospital workers ordered former patients to clean squat toilets at their homes and stay 3 meters (10 feet) away from them during conversations. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(19 of26)
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In this Nov. 4, 2013 photo, South Korean leper Kang Chang-suk speaks during an interview with The Associated Press on Sorok Island, South Korea. Kang, who lived on the island for six years in the 1980s before returning in 2009, said men suffering from leprosy were still required to get sterilized before they got married at least until the 1980s. He said hospital workers ordered former patients to clean squat toilets at their homes and stay 3 meters (10 feet) away from them during conversations. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
South Korea Leprosy Island(20 of26)
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In this Nov. 4, 2013 photo, Oh Dong-Chan speaks during an interview at Sorokdo National Hospital on Sorok Island, South Korea. Oh, a dental surgeon and the longest-serving physician on the island at 18 years, said many former patients have come back as word has spread that conditions on the island have improved. He said he often treats his patients, who are used to be shunned, with his bare hands because he knows they like the feel of bare skin. (AP Photo/Ahn Young-joon) (credit:ASSOCIATED PRESS)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(21 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo Park In-Suk, 84, a leprosy patient who has lived on Sorok Island, South Korea\'s leper colony established by former Japanese colonists since 1936, sits on her room 30 August 2007. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(22 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo Kim Jeong-Eun (L), 19, a student volunteer, feeds a leprosy patient on Sorok Island, South Korea\'s leper colony established by former Japanese colonists 90 years ago. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(23 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo Chang Ki-Jin, 87, a leprosy patient who has lived on Sorok Island, South Korea\'s leper colony established by former Japanese colonists since 1942, poses at his home 30 August 2007. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(24 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo Leprosy patient chat on Sorok Island, South Korea\'s leper colony established by former Japanese colonists since 1942, poses at his home 30 August 2007. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(25 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo A bridge stands over seawater to link Sorok Island, South Korea\'s leper colony established by former Japanese colonists 90 years ago, to the southwestern port of Nokdong 30 August 2007. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)
TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY(26 of26)
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TO GO WITH: HEALTH-SKOREA-JAPAN-LEPROSY by Jun Kwanwoo A bridge stands over seawater to link Sorok Island, South Korea\'s leper colony established by former Japanese colonists 90 years ago, to the southwestern port of Nokdong 30 August 2007. The leper colony established by Japanese colonialists 90 years ago will soon get its first bridge to the mainland -- sparking both hopes and fears among patients who once endured decades of isolation and maltreatment. The 1,160-metre (3,830 foot) bridge from Sorok to the southwestern port of Nokdong is scheduled to open by the Korean Thanksgiving holiday on September 25. AFP PHOTO/JUN KWAN-WOO ++++ MORE ON IMAGEFORUM ++++ (Photo credit should read JUN KWAN-WOO/AFP/Getty Images) (credit:AFP via Getty Images)