Rare Disease in Contemporary Taiwan: An Ethnographic Sthudy
|關鍵字:||醫學人類學，親屬，宗教，民族誌;medical anthropology, kinship, religion, ethnography|
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.