我的孩子「不正常」？障礙兒童母親的母職歷程初探

My Child is Abnormal? A Preliminary Exploration of the Experiences of Mothers of Disabled Children

研究目的：本研究同時從母職作為對抗「障礙歧視」的社會實踐、及其作為孩子重要「社會化」媒介，去分析障礙兒母親在教養障礙孩子過程中的內在歷程。本研究想瞭解：在陪伴障礙孩子成長的過程中，母親們是如何超越長久以來主流社會將「障礙」視作命定悲劇的負面成見，而用較為正向的方式去看待孩子的「異常」？與此同時，母親們對於孩子成年之後的藍圖又是如何？母親們是否因為孩子作為障礙者去修正她們對於「公民」的想像？研究方法：從2012年12月初至2013年4月底，本研究陸續透過身心障礙機構的協助、相關人脈以及滾雪球抽樣找到8位障礙兒母親進行深度訪談。研究結果：訪談文本結果指出受訪母親是透過「問題解決」的策略逐漸走出孩子被察覺出異常的內在傷痛。也因此受訪母親們付出相當多的心力蒐集相關資訊，為孩子安排最合適療育服務組合，期望藉此讓孩子的潛能獲得最大程度的發揮。在這過程中，幾乎每位受訪母親都展現出對早療服務的「運籌行動」技能、以及利用療育資源對孩子作規劃栽培的能力。研究結論：受訪母親對孩子最終的期待是將孩子養成獨立之人，而這樣的期待映照出臺灣社會在障礙福利制度設計上的困境。

Purpose: Feminism suggests that mothering has complicated implications. The one hand, mothering is the important medium of socialization for children. On the other hand, mothers often have to fight for the interests of their own child, especially if their child is the disadvantaged. There is a contradictory relationship between the two complications of mothering. In this article, I use the above two conceptions of mothering to analyze the internal process through which mothers nurture their disabled children. I attempt to understand how mothers of disabled solve the contradiction between mothering as a medium of socialization and mothering as a social practice countering discrimination and prejudice for the disabled. I focused on the following questions: How can mothers transcend prejudice entailing the view that disability is a tragedy to take a more positive perspective on their child’s abnormality? What is their expectation for the adulthood of their disabled child? Do they change their ideal of citizen of citizenship because of their disabled children? Methods: From December, 2012 to April, 2013, I used friends, a disabled welfare agency, and snowball sampling to identify and interview 8 mothers (mean age is 41.5) of disabled children. Results: Textual analysis revealed that the interviewed mothers used the strategy of problem-solving to overcome the internal suffering of their child being perceived as abnormal by mothers and other people. All the interviewed mothers put effort into collecting information and arranging early intervention services for their children. The goal of their mothering was the maximum development of their children’s capabilities. Almost every mother acquired mature expert abilities in logistic action and concerted cultivation. Early intervention services are scattered and non-systematic. The interviewed mothers had to take logistic action to coordinate the scattered services and design an individually-tailored delivery plan for their own child. It’s a concerted cultivation for child’s future career. Conclusions: All the interviewed mothers expected that their child would become an independent citizen who is able to fully participate in the functioning of society, including those mothers of the severely disabled child, who must depend other’s caring and economic support to survive their entire life. This unrealistic expectation results from the residual model of disabled welfare policies in Taiwan, which cannot effectively prevent the disabled adults from poverty.