The path to independent living: lived experiences of inclusive education for one of a set of twins with disabilities and her parents

Abstract

This study describes the case of a student with congenital intestinal perforations and her experience with inclusive education in the Czech Republic. She is also a sister of an identical twin with cerebral palsy. The data were gained from semi-structured interviews and bio-graphical narratives of the student during her studies at the grammar school and from her parents. Van Manen’s analyses of lived experiences was used to identify important themes for each participant. The overarching themes present in their narratives concerned Lucy’s future and the choice of the most appropriate educational environment. The parents’ narratives focused more on barriers to inclusive education, benefits of inclusive environments, medical and educational care and family support based on close cooperation with school. For Lucy, the dominant theme was being a sister with a less severe disability and caretaking of her sister. In addition to enhancing the understanding of different needs of a student with congenital malformations and her parents’ experiences with inclusive education, it helped us to explore how the specific sibling’s constellation within her family and school contexts impacts her personal perspective on life, driven strongly by a wish for independence.