培力或社會排除？從P. Bourdieu的思想分析腦性麻痺者生命歷程中的社會文化影響因素

Abstract

本研究是一位中度腦性麻痺者的生命歷程的自我敘事研究，描述著研究者從幼稚園開始到研究所階段面對醫療、就學、家庭、工作及社會場域的不同歷程。透過自我敘說的書寫過程，重新梳理自身走過的生命歷程，並藉由 P. Bourdieu的社會理論中的慣習、資本、場域以及象徵暴力等重要概念，與研究者的生命經驗進行對話討論。 本研究發現醫療、學校、家庭等場域因素都會交互影響腦性麻痺者的生活樣貌，及面對生活的生存策略，進而也影響到其未來用什麼方式面對社會及工作。 在家庭場域中，家庭養育腦性麻痺者的觀念經常受到主流社會價值影響，家庭場域中的互動與看待障礙的方式，會深深影響腦性麻痺者如何內化社會價值與產生慣習。另一方面，研究者歸納出學業成績、人際互動、健全或健康的身體狀態以及學校氛圍、社團文化等因素，是影響腦性麻痺者學校生活的關鍵因素。特別是校園場域對腦性麻痺者的社會期待與互動模式，很容易直接影響其自我認同的建立。至於醫療觀念的影響，則是會以不同的形式在家庭場域及學校場域中出現，對腦性麻痺者持續發生交互作用。 再者，研究者在整理腦性麻痺者不同階段的場域生活經驗時發現，當自身的障礙狀態與社會期待不符，則容易產生許多自我設限的現象，進而累積失敗、挫折經驗，並且認為很多事都因為自己的問題，最終將自我排除於場域或群體生活之外。 根據上述發現，研究者建議若不同生活場域能給予腦性麻痺者更大的彈性空間與互助的支持環境，增添其各項生活與學習能力，並透過自我探索方案協助其找到適合自己面對生活挑戰的方式與生命價值，更可讓腦性麻痺者辨認自身需求與狀態，表達自己的感受與理解他人的想法，進而與不同場域的人找到合作與溝通的模式，達成合宜的平衡點。如此一來，社會排除的現象也將大幅降低。This is a self-narrative study explores the effects of different fields on life course of the author with moderate syndrome of Cerebral Palsy. The study analyzes the researcher’s life stories from the age of 3 to 25in the system of medical service, education, family, working fields and diverse social communities. The researcher is able to puzzle out significant life events in the process of writing. Based on concepts of habitus, capital, field and symbolic violence proposed by Pierre Bourdieu, personal identity is further enhanced through the journey of self-conversation.The study reveals that fields including medical service, school and family interchangeably have an impact on Cerebral Palsy patient’s life style, strategies of making living and mindset toward future career and society.In the field of family, social values dominate the way of caretaking, in which interaction and perception of disabilities have fundamentally influenced internalization of self-value and development of habitus for a Cerebral Palsy patient. Additionally, school grades, relationship, wellbeing, school life, and club culture are discovered as significant factors for a Cerebral Palsy patient’s school life. In particular, development of self-identity is easily subject to relational interaction and social expectation in school field. Concepts of medical service would appear in diverse forms in fields of family and school, constantly having interaction on the Cerebral Palsy patient.Moreover, it has been found that negative self-perception and limit occurs frequently as discrepancy between personal disability characteristics and social expectation exists, which brings on more failure and frustrating experiences. Self-criticism coming along with leads to the researcher end up living away from the fields or community.According to the findings aforementioned, the study suggests to provide more supportive flexible assistance which enables Cerebral Palsy patients to strengthen all kinds of living and learning abilities. Furthermore, self-exploration project offers people with Cerebral Palsy access to appropriate action towards challenges of life, empowering the group of people to identify their needs and status. It further encourages Cerebral Palsy patients to express themselves and understand others, which benefits to develop the approach of collaborating with people from distinct backgrounds. As a balance between the needs of Cerebral Palsy patients and social expectation are achieved, the possibility of social exclusion can be exponentially decreased.