林玫君Lin, Mei-Chun范榮玉Fan, Jung-Yu2020-12-142020-07-012020-12-142020http://etds.lib.ntnu.edu.tw/cgi-bin/gs32/gsweb.cgi?o=dstdcdr&s=id=%22G060630003A%22.&http://rportal.lib.ntnu.edu.tw:80/handle/20.500.12235/111617本研究旨在探討被凝視的「小耳朵女孩」遊走於「看」與「被看」之間的生命經驗，研究以自我敘說之情感喚起式為徑路，道出小耳朵女孩在身為聽覺障礙者、顏面傷殘者、羽球運動員、菜鳥教練、演講者等多重身份下，在成長、求學、訓練及比賽的過程，如何看待「障礙」以及如何看待自己。 研究者因天生的罕見疾病造成下頷骨顏面發育不全，遠視加上視力的閃光症狀掛著厚重眼鏡，聽力缺陷帶著助聽器。沒有完整的外觀，外在環境需面對人與人之間互動時的障礙隔閡，異於常人的五官對抗著眾人好奇與批判的目光；內在自我則徘徊於「聽人」與「聽覺障礙者」之間，面臨搖擺不定的自我不認同感，究竟要將自己的身分歸屬安放何處；以及「運動員」與「身心障礙者」間，因為他人的眼光，漂浮著懸而未決的定位，同時潛藏著無法規避的孤獨感。 研究者以身為聽障運動選手的親身經驗，透過三種視角：以「本我」最直接的感受自己；跳出自我，將自己當成一部紀錄片；從觀察別人的反應，來為自己打分數。站在不同視野下的諸多面相，由諸多的身分糾結、禁聲於社會強加的理想下、遭受排擠的苦痛經驗、無法坦然對自己的陰鬱中一件件重新經驗，試圖釐清身體、主體性與疾病過程之關係，打破社會對於障礙身體的想像，開展出得以安身立命的生存美學，尋覓出自己最適合存在的樣子，期盼藉此生命故事，提供身心障礙者、障礙者之父母、教育者、同儕等相關者參考，亦給予社會大眾進一步認識「身心障礙」與「身心障礙運動員」之機會，以期建立出更多元友善的社會氛圍。This research aims to discuss the “small ear girl” personal experience, that she has been gazed upon ever since her birth and wondered her whole life between observing others and being observed. The research started with recalling her very personal story of how she views herself while growing up, and how she addressed “disabilities” in all her life as an athlete on the court and as a student off the court, leading out multiple identities of the “small ear girl” as a hearing-impaired and facially disfigured person, badminton athlete, rookie coach and lecturer. The author’s rare birth defect caused a genetic disorder characterized by deformities of the ears, eyes, cheekbones, and chin. Diagnosed with hyperopia and astigmatism, the author has to wear cumbersome eyeglasses and hearing aids with an incomplete appearance facing judgments and critics and disabilities. Underneath her heart, the author wonders between “a normal-hearing person” and “a hearing-impaired person”, an uncertain self-identification, as well as “an athlete” and “a disabled person” because of others’ judgments. The reality makes the author constantly ask herself where she belongs and which enhances the inevitable sense of loneliness underneath her heart. The author develops this thesis in three angles with her personal experience as a deaf-athletes. Firstly, “id” is the most straightforward inner-self. Furthermore, “Outside of the id” sees oneself as being documented as a documentary. Lastly, “observing others” gives herself a mark. In this thesis, the author tries to clarify the relationship between the disease, identity and her disability by breaking the imagination of the social expectations towards disabled people, finding the best version of herself as an individual and developing a spirit to have entrustment upon standing on top of multiple challenging scenarios including living as various identities in life, silenced by social expectations, suffering the painful experience of social exclusion and facing the gloominess of inability to confront herself honestly. The author wishes to offer disabled people, parents with disabled children, educators and colleagues to take herself as a reference, allowing the society to get to know “Disability” and “Disabled athletes” more, and wishes to create a friendlier social environment in the future.小耳羽球運動員罕見疾病身體美學自我探究small earbadminton athletesrare diseasebody aestheticsself-discoverTreacher Collins Syndrome (TCS)