01 May2021

110.05.04醫學人文專題演講《知識與福利制度的補丁者:台灣自閉症家長的照護實作分析》宋玟靜 (Assistant Professor, Institute For The History & Philosophy Of Science & Technology, University of Toronto))

知識與福利制度的補丁者:台灣自閉症家長的照護實作分析
Family-centred Intervention: Parents of Autistic Children as Patch Makers of Limited Knowledge and Restricted Welfare System in Taiwan

Speaker─
宋玟靜Wen-Ching Sung
(Assistant Professor, Institute For The History & Philosophy Of Science & Technology, University of Toronto )

Date──
2021/05/04(Tue.)1 -3 p.m

Venue──
15F Conference Room 2, Comprehensive Medical Building (Rear Building), TMU
簡介:
在台灣,政府並沒有針對自閉症設置特定的支援計畫。政府給予自閉症的療育資源主要是透過健保的早療(亦即學齡前的療育),因此社會大眾、甚至家長,往往是從早療的框架去理解自閉症。但自閉症者面臨的挑戰是發展性的,意味著他們無法隨著年歲增長,自發性地滿足社會的期待,順利完成入學、就學、畢業、就業、結婚、生子等各階段的目標。學齡前的療育固然對孩子日後的成長幫助很大,然而,對星兒及其家庭而言,所謂的早療,應該是提早準備每個發展階段所需的能力,持續提供需要的協助。在有限的醫學知識、侷限的社會福利制度下,星兒家長成為自閉者長期照護的中心,知識與體制的補丁者。講者將以訪問、田野資料分析這些補丁的特色。
Introduction:
Autism is a developmental condition. It means that individuals with autism have challenges to meet social expectations in each stage of life. Till today medicine has a limited understanding of the complexities of autism and offers no effective remedies. The static diagnostic description of autism does not inform parents how to help their autistic children thrive either. Meanwhile, the state often cannot provide specific support tailored to the needs of people with autism and their families throughout stages of life. Parents and major caregivers of autistic people come to fill in these gaps and become the center of intervention. They turn to be the patch makers of limited medical knowledge on the one hand and restricted social welfare systems on the other. In my talk, I will illustrate features of these patches based on interviews and fieldwork in Taiwan.