台灣成年智能障礙者的「自我倡導」經驗初探

Abstract

1974年美國奧勒岡成立世界第一個自我倡導團體，在那之後，強調障礙者為自己發聲的自我倡導理念，逐漸傳播到了歐洲各國、亞洲各國、加拿大及澳洲，而台灣在近幾年也開始嘗試推展自我倡導，有愈來愈多的團體投入，對照國外障礙運動的發展脈絡，雖然台灣起步較晚，但也走出由「專業倡導」、「家長倡導」再到「自我倡導」的相似軌跡，然而台灣的自我倡導經驗卻鮮為人知，為了解智青實際參與自我倡導的經驗，本研究採用深度訪談法，訪談10位智青及7位助理，研究目的有三：1.描繪智青參與自我倡導經驗的樣貌。2.瞭解參與自我倡導經驗對於智青的意義。3.以智青及助理參與自我倡導經驗探討台灣未來自我倡導推展的可能性。研究結果發現，自我倡導的參與過程中，智青有許多機會擔任「重要角色」，智青能從中學習和成長，以及智青與智青之間的「夥．伴」關係及助理的「後援」角色，使智青在「內在態度及信念」和「外在行為」上產生了蛻變。但在這些經驗背後，助理扮演了關鍵的角色，包含製造機會和允許犯錯的空間、提供個別化的支持，然而卻也面臨來自助理角色本身及外部環境的難為處境，使得助理這份工作更具挑戰。依據研究發現，我更進一步地去討論自我倡導理念得以運作的條件，以及自我倡導的經驗能否延伸到日常生活？最後，本研究亦針對未來研究及實務提出建議。

In 1974, the first self-advocacy group was formed in Oregon in the United States. After that, the idea of encouraging the disabilities to claim for their own rights has disseminated to European countries, Asian countries, Canada, and Australia. In recent years, Taiwan has also put effort in developing self-advocacy, which attracts more and more groups to join in. Though Taiwan had a late start when compared with the context of disability movements in western countries, its development history is quite similar to them. It also started with “professional advocacy,” then took up with “parental advocacy,” and finally succeeded in “self-advocacy.” However, few studies have examined the self-advocacy experiences in Taiwan. This thesis endeavored to present the experiences of people with intellectual disabilities who have participated in self-advocacy activities. Data were collected by In-depth interviews with ten people with intellectual disabilities and seven supporters. There are three purposes of this research: 1. To portray the experiences of people with intellectual disabilities who participated in self-advocacy activities. 2. To find out what the experiences of participating in self-advocacy activities means to people with intellectual disabilities. 3. To explore the possibilities of promoting self-advocacy in Taiwan via the experiences of people with intellectual disabilities and the supporters. The results of this analysis are listed below: People with intellectual disabilities have attained more opportunities to be “important roles,” and have learned a lot from that during the process of participating in self-advocacy activities. The partnership between people with intellectual disabilities and supporters who serve as the backup role also makes internal and external changes on the former, including their attitudes, faith and behavior. Behind these experiences, the supporter plays a key role. He or she not only creates opportunities and space for people with intellectual disabilities to make mistakes, but also provides individual supports. Nevertheless, the supporter also has to deal with the dilemmas from his or her own roles and the environments, which makes it a challenging job. According to the findings, this study discussed the conditions which would make the idea of self-advocacy more practical. It also discussed whether the experiences of participating in self-advocacy can benefit people with intellectual disabilities on a daily basis. In the end, this thesis provided suggestions for future research and practice as well.