지체장애인의 삶의 궤적 : 한 근육장애인의 저항과 순응의 순환적 변주에 대한 생애사 연구

초록

This study explores the process and mechanisms through which the uniqueness of life is formed, based on the life history of an individual with a physical disability who has a muscular disease. Using Rosenthal's narrative-biographical research methodology, an in-depth examination of the participant's entire life was conducted. The findings reveal that the uniqueness of life in an individual with a muscular disease can be defined as the concept of “cyclical variations of resistance and compliance.” The main implications of the study are as follows: First, the physical changes resulting from the muscular disorder significantly impact all areas of life. Second, resistance in the life of an individual with a muscular disease primarily arises from barriers in family and society, which exacerbate the disability in daily life. Third, individuals with muscular diseases experience a cyclical process of resistance and compliance, actively utilizing social welfare systems while confronting societal barriers. Finally, compliance in this cyclical life structure seems to be rooted in the implementation of social welfare policies. Based on these findings, the study makes the following recommendations: First, there is a need for a new discourse on disability that can reshape social perceptions of individuals with physical disabilities. Second, current social welfare policies and practices should be restructured to maximize the autonomy of individuals with physical disabilities. Third, welfare spaces should be expanded for individuals with muscular diseases to share experiences and foster empathy, thus enhancing social solidarity and support.

키워드