명예낙인(courtesy stigma)과 도전: 자폐성 장애인을 자녀로 둔 부모의 경험에 대한 현상학적 연구
Challenging Courtesy Stigma: A Phenomenological Study on the Experiences in Parents of People with Autistic Disorder
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본 연구는 자폐성 장애인을 자녀로 둔 부모들이 자녀를 돌보면서 겪는 명예낙인 및 이에 대한 도전 경험을 탐구하였다. 연구목적 달성을 위해 장애인부모 단체 회원인 10명의 부모와 개별 면접을 실시하였으며 Giorgi의 현상학적 방법을 활용해 자료를 분석하였다. 분석결과에 의하면, 장애인의 부모들은 장애인 자녀와 동류로서 무시당했으며, 공공장소에서는“부적절한 훈육자”로 비난받고 가족, 학교, 복지기관에서조차 “죄인 취급”받으면서 “해결사”의 역할을 기대 받았다. 하지만 그들은 자신과 자녀의 정상성을 옹호하고 긍정적 정체성을 얻음으로써 자녀 장애의 책임자라는 낙인에 도전하였다. 그들은 자폐에 대하여 정상과 비정상의 경계를 허무는 담론을 행했으며, 죄인이나 해결사가 아니라 평범한 시민의 삶을 누리면서 장애의 사회적 책임을 촉구하는 장애전문가의 정체성을 획득했다. 본 연구는 명예낙인의 근절을 위해 대중인식개선, 장애인서비스자원 확충, 전문적 실천윤리 강화, 부모의 역량강화 지원을 제안하였다.
Abstract
This study investigated how parents of people with autistic disorder were stigmatized by association with their disabled children and challenged the stigmatization, while caring for their children. This study employed the individual interviews involving 10 parents of people with autistic disorder who were members of self-help groups, and used Giorgi’s phenomenological method for analyzing the data. According to the analysis, parents with disabled children were belittled as if they were disabled people, and blamed for not disciplining their children appropriately in public places. Also, they were expected to play roles like “problem solvers” in supporting their children, being regarded as “delinquents” among social relations in families, schools, and welfare agencies. Nevertheless, they challenged the prejudice that they should be blamed for disabilities of their children, by way of advocating ‘normality’ of their children and their own, and acquiring positive new self-identity. They blurred the lines between ‘normal’ and ‘abnormal’ about autism in their disability discourse. In addition, they gained the identity of competent practitioners in the disability field, enjoying their ‘normalized’lives as ordinary citizens. This study suggested some mass education which is targeted for raising consciousness of anti-discrimination, kinds of guidelines and measures for promoting the anti-discriminatory practice of education and socal work professionals, and governmental efforts for developing quality service system for people with autistic disorder and supporting parental empowerment as disability professionals.
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