Historical perspectives on studying families of children with disabilities: A case for critical research

Abstract

Historically, research on families of children with disabilities has been framed by the medical model, which views disability as a biological deficit, necessarily associated with burden and grief.  This body of research does not acknowledge the sociocultural contexts in which the meaning of disability is embedded, or the manner in which deficit-based hegemonic discourses shape the familial experience of having a child with a disability.  In this paper, we problematize the medicalization of the phenomenon of disability and resulting research inquiries.  We propose the use of narrative inquiry, theoretically grounded in sociocultural perspectives, as a critical research methodology for situating the lives of these families in cultural and sociopolitical contexts.  Narrative inquiries complicate conclusions drawn from the medical model and contribute to new insights on the ways in which interpretations of having a child with a disability are mutually negotiated between individuals and society.                             

Keywords:  families; children with disabilities; narrative inquiry; disability studies; critical disability theory; qualitative methodology