Disabled by the Discourse: Two families’ narratives of inclusion, exclusion and resistance in education

This qualitative study is based on the narratives of two families who each parent a young disabled child. It focuses on the children’s and families’ experiences of inclusion and exclusion within educational settings and the implications of these experiences for pedagogical change. New Zealand’s policy and curriculum contexts are considered in relation to education, disability and inclusion. I examine how the families’ perspectives and experiences interact with dominant, deficit discourses of disability. In my interpretation of the family narratives I identify particular disciplinary mechanisms that operate as tools and tactics of disabling power-knowledge production (Foucault, 1977, 1980). I argue that the policing of disabled children and families’ participation are primary processes and outcomes of these disciplinary mechanisms. The study uses a Disability Studies in Education (DSE) framework to understand and approach disability as socially, politically and culturally constructed. The assumptions underlying traditional Western educational knowledge and norms are critiqued from a counter-narrative based on experiences of disability. I use DSE research and literature to challenge knowledge regimes that interpret disability as an individual deficit requiring ‘special’ intervention and treatment. I argue that a ‘disability critique’ makes an important contribution to understanding the workings and effects of Western, Eurocentric knowledge traditions on children and families. This research further argues that exclusion is experienced by those within and outside of the dominant culture. I envisage the main research audience of this thesis to be early childhood and primary school teachers, teacher educators, early intervention and special education personnel, therapists and medical professionals. The stories and experiences of the families in this research may support teachers and other professionals to critically reflect on, and make changes to their thinking and practices. I hope to contribute to the growing body of research that can be used to support parents and families of disabled children in their efforts to promote educational change and to support the full inclusion of their children as valued people and learners within their educational contexts. I develop two main arguments in this research. The first is that in order to transform education, deficit discourses and their effects must be named and understood. The second is that New Zealand educationalists can build on existing, local frameworks to develop critical, narrative and relational pedagogies to transform exclusionary power relations and support inclusive experiences for all children and their families. I argue that approaches to disability and education based on a belief that exclusion is ‘inevitable’ and that creating a fully inclusive education system and society is an impossible dream, should be challenged and rejected. A lack of optimism and vision reproduces exclusion, and leads to weak reforms at best. Disabled children and their families deserve and have a right to an inclusive life and education and this requires people at all levels of society to take responsibility