Publication:

悠「游」世間「泳」往直前一位小腦萎縮病友的運動生命敘說

本文是一篇小腦萎縮症病友的運動生命故事。「全哥」是一位與病症共存四十三年的朋友，研究者透過深度訪談、文本蒐集以及參與觀察的方式，探索小腦萎縮症患者從發病起始，自身所面臨的時空、事件與身心歷程，選擇投入運動訓練後，對自我身體意識與生命意義的轉折與突破。本研究採用Gruber 和 Wallace 提出的進化系統取向，以及詮釋現象學的主題解析作為本研究的理論框架。依據McAdams 的訪談大綱，嘗試建構全哥的運動生命全貌。透過本研究，首先研究者以描述生活現實的手法，探尋全哥運動生命之軌跡，釐清小腦萎縮病友在社會中掙扎的心路歷程，呈現奮力掙脫殘健框架的積極力量，及隱匿於傳統身心障礙觀點下的生命故事。第二，指出一種小腦萎縮病友特有的生命史和世界之間的關係與聯繫，構築出小腦萎縮身體，得以「悠遊世間、泳往直前」的生命風貌。第三，全哥以個人化和感性化的獨特個體，從文化和社會的殘缺意義中逐漸解放出來，一種不依附常人社會的嶄新生命創建，展現了「我中有你，你中有我」生命意識的共融。雖然本文描寫的僅是個別的生命經驗，盼望這一條超越身心禁錮、病體糾纏下發展出來的「泳者之道」，提供了另一幅生命圖像的獨特展現。

This study is a Spinalcerebellar Ataxia (SCA) patient’s life story. The participant is a patient who has had SCA for forty-three years. The researchers used the depth interview, the text collection, and observation to explore the SCA patient’s life from the disease initiation, his physical and mental process during the time, and to his self-body awareness and the meaning of turning point in his life after he chose to put into exercise training.

Gruber and Wallace’s evolutionary systems as a research case study are used to be the framework in this study. According to McAdams’s interview outline, the researchers tried to construct the whole picture of the participant’s sports life: his hard difficult childhood memories, the incidence of cerebellar atrophy, the process of exercise rehabilitation efforts, the rise and fall of his indomitable fighting spirit, the company of other Spinalcerebellar Ataxia patients, and acceptance of fate in his swimming life.

The results showed that through this life story, the researchers could first understand, in depth,the meaning of the exercise experience before and after the incidence of the disease to the participant. Further, they could clarify the question about the social situation of sports participation of the Spinocerebellar Ataxia patients. Last, they could present the voices of disadvantaged groups. Although this study only described the experience of an individual’s life, it is looking forward to provide an unique life of the Spinocerebellar Ataxia patient who could get beyond his physical and mental barriers and developed his swimming life.