Social change and life-span development : Examining the entire life of Hansen''s disease sanatorium residents

本研究旨在通过考察日本汉森氏病疗养院居民的一生，探讨社会变迁与寿命发展之间的关系。我们分析了居民自己写的自传和与包括作者在内的居民的访谈记录，并考察了居民与他们所处的社会背景之间的互动。本研究的特点是侧重于HD患者本身，而现有的社会科学关于HD的研究大多着眼于制度性问题。主要结果如下：1)第二次世界大战前后，我们的线人在十几岁的时候进入疗养院。在这一时期，全国种族隔离过于严格，居民遭受粮食短缺之苦。他们的主要兴趣是“如何活下去”2)1948年，疗养院的医生开始认真使用普罗明，并取得了显著的效果。普罗明将居民从死亡恐惧中解放出来，但同时也产生了一个新的问题：如何过上新的生活。3)1960年左右，许多后遗症相对较轻的居民离开疗养院进行康复。留守的居民一般都会对自己或伴侣产生较严重的后遗症，并被迫放弃康复。在20世纪70年代和80年代，他们的主要兴趣是“如何在疗养院里生活”，疗养院内的福利和设施得到了改善，疗养院内相对平静的日子继续下去。20世纪90年代，废除种族隔离的社会潮流愈演愈烈，并于1996年被废除。1998年，这些居民提起诉讼，要求政府给予国家赔偿。他们的主要兴趣是“如何恢复他们的人文学科”。

This study seeks to investigate the relationships between social changes and life-span development by examining the entire life of the Hansen's Disease sanatorium residents in Japan. We analyzed the autobiographies written by residents themselves and the records of interviews with residents including the authors, and examined the interactions between residents and the social context in which they were embedded. This study is characterized by the point that we focus on HD suffers themselves while most of existing researches on HD in social science address institutional issues. Main results are as follows:1) Around World War II, our informants entered the sanatoriums in their teens. In this time the national segregation was far too strict and the residents suffered from a food shortage. Their main interest was "how to stay alive"2) In 1948, the doctors of the sanatoriums began to use Promin in earnest and obtained remarkable results. Promin liberated the residents from death fear, but at the same time this created a new kind of problem: "how to live a new life."3) Around 1960, many of residents with relatively mild aftereffects left the sanatorium for rehabilitation. The residents left behind generally had relatively severe aftereffects in themselves or in their partner, and were obliged to give up rehabilitation. Their main interest was "how to live inside the sanatorium"4) In 1970s and 1980s, the benefits and facilities inside the sanatoriums improved, and relatively peaceful days continued inside the sanatoriums. Their man interest was "how to live their old days"5) In 1990s, the social trend toward the abolishment of the national segregation gained momentum and it was abolished in 1996. And the residents brought a suit against the government for state compensation in 1998. Their main interest was "how to recover their humanities".