終結癲癇的汙名？癲癇團體面臨的挑戰

The End of Stigma? The Challenge to Epilepsy Group

癲癇是一種慢性、汙名、隱藏的疾病，涉及生理、心理與社會等現象。對照臺灣障礙者、性別、族群與性取向團體，癲癇長期被視之為個人悲痛，而侷限在醫學、護理學與諮商等範疇，未曾以社會學方式關照其社會面向，造成癲癇團體的社會議題較少受到積極的關照與討論。本文深度訪談17位癲癇者與相關人士，分別從客觀與主觀方向，探討臺灣癲癇者面臨的社會實在性問題。在客觀方面，本文分析指出，癲癇醫療科學進程，癲癇認知教化宣導、諮詢輔導是癲癇團體發展進程與功能。同時，癲癇以生理損傷性定義，劃入政府福利體制的障礙類別，過度偏重醫療模式與人道關懷的癲癇政策，似乎忽略癲癇有別於障礙者形式的特殊性與不利條件。在主觀方面，本文透過癲癇者的自我汙名內化、家庭汙名社會化及社會歧視的分析，說明癲癇身分的形成與排斥，形塑癲癇者的隱藏慣習與策略。最後，本文認為，癲癇醫療依然關鍵，但是基於癲癇的獨特性，癲癇汙名的終結，除了仰賴癲癇團體持續不斷地進行公眾教育之外，癲癇團體與其他身心障礙團體間，必須積極持續的對話，為癲癇者的社會、文化、經濟等方面的充權條件做好積極準備，癲癇者與家庭才能有效克服長期內化的個體化隱匿行為原則，具體化癲癇集體認同，走向類似障礙團體以權利模式為主的歷史階段，用政治行動跨越「正常」與「偏差」的邊界。

Epilepsy is a specific illness with physical, mental and social phenomenon, in wake with the five major features of unpredictable, chronic, myth, stigmatization and concealment. Comparing to those various minorities of disability, gender, ethnicity, sexual orientation, epilepsy is regards as an individual suffering, not social issues, which was concerned by medicine caring, and physiological counseling categories, not sociology. That makes epilepsy becoming as hidden and disadvantaged minority. This paper deeply interviewed 17 persons with epilepsy and other related persons, which argues social realities that persons with epilepsy confronted in the dimensions of objective and subjective separately. In the objective reality, the paper presents the rationalization process in the epilepsy medicine, and emphases the de-myth and de-stigmatization which the cognitive-psychological oriented that epilepsy self-help group reflects. In the subjective reality, the identity management by epilepsy patients and their families who are afraid of being exposed immediately after their diagnosis results in self-stigmatization as a survival strategy. The epilepsy patients' groups fail to adopt politic action since these organizations are mostly led by medical experts, social workers, and hospital management who discouraged the patients to adopt a more assertive role. As they focus on health education and social education, little attention is paid to the issue of how to challenge the social oppression on the people with epilepsy.