疾病烙印與困難遺產：雙溪毛糯麻風療養院保存運動的反思

The Stigma of Disease and Difficult Heritage: Reflections on the Preservation Movement of the Sungai Buloh Leprosy Settlement

馬來西亞的雙溪毛糯麻風療養院，建於1930年，其歷史無法置外於十九世紀末和二十世紀初麻風防治的國際趨勢和英殖民馬來亞的政治經濟脈絡來理解，充滿了許多複雜的面向，不僅僅涉及公共衛生和醫藥研究，還包括宗教／慈善團體的活動和權力欲望、醫病關係、疾病烙印、病患人權、隔離的建築與空間等等。不少康復者後代，曾對隔離、送養和疾病烙印，提出了「反人權」控訴。麻風病防治的歷史無疑是一段「艱難的歷史」。過去二十年，由於發展與變遷，引發了療養院的保存運動以及對麻風病防治歷史的再認識與再詮釋。本文認為，麻風療養院的文化遺產保存不應該只為了追逐世界遺產地位，更不應該排除歷史的複調與雜音；再現康復者的頑強生命力和韌性主體，也不必然要邊緣化病患人權論述和他們曾經經歷的污名和歧視。

Malaysia’s Sungai Buloh Leprosy Settlement (SBLS) was built in 1930. Its history, which encompasses many complex aspects, involves not only public health and medical research, but also the activities and power dynamics of religious/charitable groups, doctor-patient relationships, disease stigma, patient human rights, and the architecture and spaces of isolation. This history must be understood within the context of both the international trends in leprosy control in the late 19th and early 20th centuries and the political and economic backdrop of the British Colonial Malaya. Many descendants of survivors have condemned the practices of forced segregation, the institutionalization of patient-children separation, and the stigmatization of the disease as“violations of human rights”. The history of leprosy prevention and control is undoubtedly a“difficult history”. Over the past two decades, changes and developments have sparked a movement to preserve SBLS and prompted efforts to re-examine and re-interpret the history of leprosy prevention and control. This essay argues that the preservation of SBLS should not be pursued solely for achieving UNESCO World Heritage status, nor should it overlook the polyphony and complexity of this history. Moreover, highlighting the vitality and resilience of the survivors can be done without marginalizing the discourse on patients’human rights or the stigma and discrimination they endured.