The journey of becoming and being a mother raising a disabled child

Abstract

Although the experiences of mothers raising disabled children has been studied, their experiences are often still negatively interpreted (Beresford, 1994), or marginalised by professionals, prevailing discourses of motherhood, and debates within disability studies (Ryan and Runswick-Cole, 2008; McLaughlin, 2006; Brett, 2002; Green, 2001). This thesis seeks to provide new insight into the lives and perspectives of such mothers. The main concern is what mothers learn from their journey of changing social position from being a non-disabled person to being a mother raising a disabled child and what we can learn from them. The analysis focuses on three topics, how mothers construct their motherhood in the context of disability; how mothers manage issues around disability in their practices of motherhood; and mothers’ reflections of professional knowledge and lay expertise. Sixteen mothers from the North East area were interviewed and the detailed data has been gathered by using qualitative methods including semi-structured interactive interviews. The main arguments are generated from the respondents’ experiences within their daily lives. Although surrounded by various social actors who provide diverse types of support, I will argue that mothers still experience an isolated type of motherhood. This then leads to discussions about issues related to care, dependence, and the boundary between the private and public spheres. Rather than being fixed within the binary discussions between the medical model and the social model, the respondents worked with an understanding of disability which recognised its social construction, alongside the specific practical and medical needs of their child. In doing so they approached discourses of need, impairment and care flexibly so that they could manage issues around disability in ways appropriate to they and their child’s social position.