The Experiences of Women who Mother Children with Disabilities: Maternality, Relationality, Subjectivity

Abstract

The aim of this thesis is to present, explore, and interpret the experiences of women who mother children with disabilities. The experiences of motherhood and mothering children with disabilities are seldom rendered visible in social research, and have rarely informed developments in social theory, motherhood studies, the sociology of personal life, or theories of the self. This research sought to address these issues and foreground the experiences of an under-represented group, through in-depth qualitative interviews and personal community mapping with 18 women who mother children with disabilities residing in New South Wales (NSW), Australia. The approach to the study brought together the perspectives of two generally discrete fields of sociological inquiry: Motherhood Studies and the sociology of personal life. The research found that women who are mothers of children with disabilities live within social, cultural, political, and economic contexts which assume they have the capacity to ‘freely choose’ how they live their lives and form their relationships, while also expecting them to remain indefinitely self-sacrificing, primary carers for their children with disabilities. Thus, these women’s lives are framed by competing and highly problematic sets of assumptions and expectations that cannot be solely understood in terms of individualisation theory, which assumes an individual’s agency and freedom of choice in authoring their lives (Beck, 1992/1994). The concept of ‘hegemonic maternality’, an adaptation of Raewyn Connell’s (1995) theory of ‘hegemonic masculinity,’ emerged from the research as a useful framework in understanding and theorising the normative social, cultural, and structural forces that produce and regulate women’s experiences as mothers. It suggests that persistent unrealistic assumptions and expectations around motherhood and mothering translate as obligation and constraint in these women’s lives. Women who are mothers of children with disabilities must navigate and negotiate complex, contradictory, and pervasive assumptions and expectations of how to mother their children, as they conduct their relationships and seek to define their sense of self. The consequences of such endeavours are far-reaching: they expose these women’s consistent struggles to both contest and conform to normative concepts of motherhood. The findings also point to the affordances of theories of relationality (Jallinoja & Widmer, 2011; Emirbayer, 1997) in more fully explaining the topography of their lives. By positioning these women’s lives and experiences in the context of concepts and debates around motherhood, personal relationships, as well as the formation of the self and subjectivities, this research offers a number of original contributions to the knowledge base of the sociology of motherhood, of personal life; and of the self, and contributes to theoretical developments relating to maternal experience in contemporary Australian society. First, this thesis argues for the interdependence of two fields of sociological inquiry in order to forge new understandings within and between both. Second, the study contributes to each field through the development of the conceptual framework of hegemonic maternality. Third, it challenges individualisation theory by demonstrating its inappropriateness for women who are mothers of children with disabilities. Fourth, this research provides substantial evidence that will potentially influence social policy, public attitudes, and future research and scholarship.