樂生保留運動開展至今超過十五年, 2016年行政院拍板撥款進行「國家漢生病醫療人權園區」的硬體修繕計畫,卻因此而再次激起矛盾、激化抗爭。本研究探問的是,為何人權園區的遺產打造實作無法回復患者人權?而患者人權又指涉些什麼? 本研究通過對於五位院民的口述故事進行敘事分析,指出現有園區計畫的「醫療人權」定位與以「專業技術」為導向的遺產打造實作方法,並無法囊括樂生院民長久以來因漢生病而權益受損以及生命受限的實態。 本文並以近年樂生訪調小組在院內進行的文物典藏與策展工作為參照,試圖提出一「以院民(敘事)為核心」的工作方法,並進一步指出,文化遺產保存的重點應在於保留活的社群與當事者記憶,而非單純著重於固著的硬體空間。
It has been 15 years since the Lo-sheng sanatorium preservation movement was first-time launched. In 2016, Executive Yuan announced that the “National Hansen’s Disease Medical Human Rights Museum” will be refurbished and supported by the government. However, protests and controversies have risen again. This study is to discuss: why cultural heritage in Human Rights Museum cannot represent patients’ human rights? And what do patients’ human rights refer to? The analysis, based on narratives described by five Lo-sheng residents, indicates the position of the “medical human rights” in the current plan and the “professional techniques” used in the construction of the heritage do not express the deprivation of patients’ human rights from Lo-sheng residents and the dilemma they faced due to Hansen’s disease. This study refers to the “Lo-sheng interview group(樂生訪調小組)” dedication to the collections and the exhibitions in Lo-Sheng Sanatorium, and the methodology of this study is narration-orientated. Furthermore, it also indicates that the cultural heritage preservations should focus on retaining the living communities and the memory of the residents instead of only renovating buildings and facilities.