當代臺灣罕見疾病家庭的民族誌研究

Abstract

本研究以罕見疾病社群中的五個北區病友家庭，作為民族誌的研究對象。在2012-2014的一年多田野時間裡，筆者觀察與記錄這些家庭在社群文化之下的宗教、親屬關係，以及報導人的敘事建構。該社群的病友是一個在生理特徵上較為特殊的群體，病友的組成具有跨越族群、性別與年齡的特性。此疾病的特徵上也與慢性疾病、老年人的生理狀態有相似之處。因此，對於一些年紀甚小的罕病兒，已經面臨有別於常人的身體、生命與生活的成長歷程，乃至家庭手足間角色易位的經驗。疾病為病友及其家人的生活，所帶來的社會影響，則是發生在病友社群社會身分的多元性--亦即一個病友可能同時具備不同的資源分配角色，擔負著不同的社會任務與享用著不同的社會資源。此一疾病與社會的關係涉及了複雜又困難的國家與醫病及弱勢協助等政策議題。再者傳統的民間宗教信仰，是臺灣當代社會家庭重要的傳承。罕見疾病發生後，世代間不同的宗教選擇，這個傳承也帶來醫療選擇上的衝突。而信仰西方宗教的家庭與信仰民間宗教的家庭，因信仰的差異，他們所面對的疾病醫療與宗教的關係與衝突，也有所別。最後從漢人社會的親屬脈絡切入，探討病友原生家庭的組成，與疾病衝擊後的新親密關係網絡，兩者交叉的影響，使得病友家庭在面對疾病的過程，讓他們時而感到幫助，又時而感到無力。本研究試圖以民族誌的研究與書寫，將罕見疾病社群中的文化想像提供一個較為清晰的描繪。將抽象的社群文化藉由他們生命的敘事，呈現給需要參考的個人與團體。

This ethnographic study is about the five patients’ families from the community of rare disorder disease in northern Taiwan. Through the one-year-long fieldwork from 2012 to 2014, the writer observed and recorded the religion and kinship conversion of these families under the community culture, and the narrative of informants as well. Patients of these communities have special physical and mental characteristics, and the formation of members in the community is inter-ethnic, cross-sex and cross-generational. Also, the symptoms of the disorder disease are similar to chronic diseases or specific symptoms of geriatrics. Therefore, for those young patients with the rare disorder disease, they have distinct bodies, lives and growth processes from ordinary people, and even experience of exchanging character with their siblings. The impact of the rare disorder disease on the patients’ and their families’ everyday life is embodied in the diversity of their community status. That is, a patient may act as different roles about social resources distribution, take charge of different social tasks and have different social resources at the same time. Relationship between these patients of the disease and society involves complex and tough issues about medical assistance and underprivileged minority support. In addition, the traditional religion acts as the major bond in the family of contemporary Taiwan. However, when the rare disorder diseases take place, this bond would result in the conflict of medical choice due to the cross-generational difference of religious choice. Furthermore, families with Western religious beliefs and Taiwanese traditional religious beliefs are likely to face different impacts of medical and religious conflict. Finally, through the kinship culture of the Han Chinese people, we investigate the formation of patients’ families and the new intimate relation of families’ members after the impact of disorders. The above two relationships both affect patients‘ families and make them feel helpful but also powerless. In this study, the author attempts to research and describe this topic in the way of ethnography, giving the cultural imagination of the community of the rare disorder disease a clear description, and showing the abstract culture concept by a narrative of patients’ lives for people or groups who require it.