疾病範疇與自我轉變:以台灣成年妥瑞人為例

作者資訊
詹穆彥
台北大學社會系專任研究助理
        「人的類別」(kind of people)往往隨著醫療分類範疇而轉變,兩者之間存在互動關係,也影響了被分類人們的自我認同。相對於西方,妥瑞症在台灣是一個較為晚近才進入大眾意識的新興範疇。具有妥瑞症現象的人們常在與醫療知識及社會文化的互動過程中挪用了其中的客觀基礎,形構出了一種特殊的台灣「妥瑞人」認同,重新以神經科學的內涵細緻且全面地架構了關於自我的各個面向,獲得一種新的經驗自我方式。這種新的認同在某種程度上對患者具有充權的效果,不僅去除某些既有污名及道德負擔,也賦予了這些人們進一步行動的可能性。然而,新的認同也產生妥瑞人需要面對及處理的一系列新議題。藉由探索他們的經驗歷程,更有助於理解疾病範疇與醫用者相互生成的動態過程。本研究尤其聚焦在成年妥瑞人,包含在生命中較晚遇見妥瑞症的人們,他們鮮明且獨特的生命經驗更有助於探索這樣的轉變歷程。
 
Disease Categories and Personal Identity: Adult Persons with Tourette Syndrome in Taiwan
 
  “Kind of people” is usually intertwined with changing medical categories, and together they influence the self-identification of people who have been classified by scientific knowledge. Tourette syndrome is a relatively new disease category in Taiwan with specific historical and social characteristics. In this article, I explore the ways in which many of the people diagnosed with this new medical category in Taiwan have creatively appropriated the clinical side of the neurological discourse and worked collaboratively with medical professionals to generate a self-identity, ‘Tourette ren’ (Touretter), which is able to further their personal and social interests. Their newly gained neurological knowledge reconfigures every facet of daily life and makes them experience their selves in new ways. This new kind of self-identity in a sense not only empowers them and eradicates their social stigma and moral burden, but also provides them with more possibilities in regard to their personal development. However, the new identity produces a series of new agendas which people with Tourette syndrome have to deal with. This article focuses on experiences of adult persons with Tourette syndrome in Taiwan. By exploring their experiences, this study brings forth the dynamic and mutually shaping relationship between disease categories and medical users.
引用: 
《科技、醫療與社會》,第25期,頁7-62,2017年10月出版