A Study on the Issues of Participation of People with Intellectual Disabilities in Research Process in Korea

장애연구에의 지적장애인의 참여를 둘러싼 쟁점에 대한 고찰

The Purpose of this study is to explore if people with intellectual disabilities can play a role as 'meaningful informants' in research process in Korea, by challenging the existing paradigm which consists of suspicion on the communication ability of people with intellectual disabilities and truthlessness of their statements, which results in ignorance on the covered life of people with intellectual disabilities. In this research, lessons which could learn through reinterpretation of my research experience are as follows. Firstly, the deficits of communication ability can be supplemented with restructuring interview instruments such as research questions, visual aids etc and adopting conversation analysis methods. Secondly, Suspicion on the truthlessness of their statements can be restructured by epistemological and methodological reinterpretation on the representation of social reality. Thirdly, the mechanism of exclusion and oppression according to the ignorance can be substituted by 'uncovering the life of people with intellectual disabilities', which can be basis of reconstructing the contents of programmes in the disability service centers and disability policies in the government. With these research results it could be argued that there needs to include people with intellectual disabilities as meaningful informants in the research projects funded by the government and also to provide people with intellectual disabilities with diverse roles in the research process by virtue of the development of qualitative research methods in the near future.

본 연구는 지적장애인은 의사소통능력이 부족하고 진술에의 진실성을 담보하기 어렵기 때문에 연구과정에 이들을 포함시키는데 소극적인 입장에서 탈피, 지적장애인의 적극적인 참여 패러다임으로의 변화를 강조한다. 이와 관련하여 '언어를 매개로 한 의사소통능력의 부족'은 지적장애인의 특성을 고려한 면접도구 개발과 대화분석방법을 도입함으로써, '진술의 진실성'에 대해서는 사회적 실재의 재현(representation)을 둘러싼 다양한 질적연구방법을 개발하고 진술 의미를 재구조화함으로써, 그리고 무지에 따른 배제와 억압의 메커니즘은 지적장애인의 삶 드러내기를 통해 극복될 수 있음을 보여주고 있다. 동 연구결과는 앞으로 장애정도별로 다양한 자료 수집 및 분석방법이 개발되어야 하며 아울러 각종 정부연구용역에서 지적장애인이 연구과정에 포함되도록 하는 연구방법론의 변혁이 필요하다는 함의를 제공해 준다.