疾病範疇發展與自我轉變：妥瑞症在台灣

Tourette Syndrome, Disease Categories and Personal Identity in Taiwan

詹穆彥(Mu-Yen Chan)

指導教授 ： 王文基 ； 毛傳慧

國立清華大學/人文社會學院/歷史研究所/碩士(2013年)

https://doi.org/10.6843/NTHU.2013.00538

摘要

妥瑞症的範疇及其內涵之發展轉變，與西方精神醫學史的脈絡息息相關。隨著1960-70 年代精神醫學的重大變革，該範疇逐漸從動力精神醫學典範轉換至以生物器質為主導的理解方式。伴隨著美國的病患團體網絡（美國妥瑞症協會）快速串連與擴展，妥瑞症的概念亦發生重要轉變，由早期的「罕見疾病」轉換成為一種可能具有高度盛行率的生理狀況。1990年代之後，隨著神經科學的蓬勃發展，更確立了該範疇的神經生理蘊涵。

對比西方，妥瑞症在台灣是一個較為新興的疾病範疇。台灣的精神醫學專業在1980年代承接上述生物器質的脈絡，對妥瑞症進行研究及討論。隨著神經科學的爆炸性發展，相關討論在 1990年代後期逐漸轉換到以神經醫學為主導。相關理念進入台灣的大眾意識過程相對較晚近，約在2000年之後，以神經科醫師主導的知識節點，憑藉著一套類似美國妥瑞症協會的拓展及推廣方式，藉由各種媒體與衛教活動連結到具有共同利基的醫用者（妥瑞家長及教師），並經常將醫療凝視的焦點聚集在於孩童身上。即便承接了具有穩固樣貌的醫療知識，該範疇在台灣仍有其歷史及社會過程。實際上，台灣目前主流的妥瑞症知識依然是在多元行動者互動之下共同形構的成果，不同的專業社群各依據其關懷相應發展出不同的知識內涵及實作方式，醫用者亦在知識內涵的穩固過程中扮演了重要角色。同時，一種特殊的妥瑞形象在我們的文化當中被共同形塑及確立出來。

被該範疇所分類的人們在上述過程中受到重大的影響，同時也反過來參與了知識形構及文化形象的形塑過程。具有妥瑞現象的人們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，重新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重新架構了關於自我的各個面向，獲得一種全新的經驗自我方式。這種新的認同在某種程度上對患者具有充權的效果，不僅去除了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，這樣的「新自我」伴隨的是這些人們需要去處理一連串新議題。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。本研究尤其聚焦在目前相對比較不受醫療所注視的成年妥瑞人（一群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。

關鍵字

科技與社會 ； 醫療史 ； 醫療化 ； 妥瑞症 ； 自我認同

並列摘要

The disease category of Tourette syndrome and its implication evolved closely with the development of Western psychiatry. As the medical paradigm shifted from psychodynamic to organic and physiological etiology within the neuropsychiatric profession, the 1960s-70s witnessed a fundamental transformation concerning the way in which Tourette syndrome was understood. As patient groups and networks—the Tourette Syndrome Association (TSA) for one—grew rapidly in America, the concept of Tourette syndrome has also changed from a rare psychological disease in the past to a physiological disorder with an solid organic basis and high prevalence.

With explosive advancement in neurology in the 1980s and 90s, the neurophysiological implication of Tourette syndrome has been further consolidated. Interestingly, Tourette syndrome is still a relatively new disease category in Taiwan. Psychiatric profession followed the Western physiological paradigm and started to research on Tourette syndrome around 1980s. Later in late 1990s, the main discourse gradually shifted to neurology. Nevertheless, the disease did not enter the public consciousness until about 2000. As a main knowledge node, neurologists in Taiwan, following the American model, made use of various kinds of media and allied with other health educational providers to publicize Tourette syndrome. They sought alliances among Tourette parents and elementary school teachers, and turned children with Tourette into targets of medical gaze. During the process, Tourette syndrome and the related medical knowledge became increasingly common in Taiwan. Even though the whole set of knowledge seemed to be transplanted from modern neurology, the category itself has specific historical and social characteristics in Taiwan. In fact, the mainstream knowledge of Tourette syndrome was shaped by a variety of agents. Not only did different professions developed their own knowledge and practices based on their professional concern, medical service users also played an important role in this process of negotiation. Meanwhile, a unique image of ‘people with Tourette’ was shaped and stabilized in the public domain.

The introduction of Tourette syndrome to Taiwan has great impact on people diagnosed with the disease when they encounter this new body of knowledge. Furthermore, as in the cases of other countries, they has also been actively participating in framing the disease and its cultural images. The present study focuses on adult ‘Tourette patients’ in Taiwan—those who did not encounter Tourette Syndrome until their adulthood or late adolescence. Their unique experiences helps exemplify this changing process much more vividly. On the one hand, they appropriate the clinical side of the neurological discourse, and, on the other, they use it to work collaboratively with the 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 accordingly reconfigure every facet of daily life and make their perception of themselves an unprecedented experience. This new kind of self-identity in a sense not only empowers them and helps eradicate 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 agenda which people with Tourette have to deal with. By exploring their experiences, this study brings to forth dynamic and inter-shaping relationship between disease category and medical users.

並列關鍵字

Science, Technology and Society(STS) ； Medical History ； Medicalization ； Tourette Syndrome ； Self-Identiry

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