Disability and Mothering: Liminal Spaces of Embodied Knowledge

18. The Political Is Personal: Mothering at the Intersection of Acquired Disability, Gender, and Race

245 18 The Political Is Personal Mothering at the Intersection of Acquired Disability, Gender, and Race J u l i e E . M ay b e e The social model of disability urges us to define disability as a category of identity that is socially constructed. In the classic version that was developed by the Union of the Physically Impaired Against Segregation (UPIAS and Disability Alliance 1976), an organization founded in the mid1970s , people are not disabled by their bodies or impairments, but by the societies in which they live. Impairments do not disable people; society’s prejudice, discrimination, and oppression disable people with impairments . This social model was intended to replace the medical model of disability, which defined disability in terms of the physical and/or mental impairments of an individual. The social model suggests that the political is personal. Social and political institutions and attitudes disable individuals and thereby construct the personal experiences of impaired individuals as disabled.1 Research on the mothers of disabled children has been dominated by the medical model of disability and a focus on the personal and psychological aspects of being the mother of a disabled child (Ryan and Runswick -Cole 2008). As Sara Eleanor Green (2007, 151) writes, it has focused on the supposedly “individual, emotional burdens of having a child with a 1. An excellent summary and history of the social model can be found in Thomas 2004. 246 • Julie E. Maybee disability rather than on the burdens imposed by negative public attitudes toward disability and inadequate support.” The literature on mothers of disabled children has emphasized issues such as denial, acceptance, grief, stress, depression, or what Green calls the “Subjective Burden,” while deemphasizing if not completely ignoring the “Objective,” sociostructural constraints and benefits of being the parent of a disabled child (151). With the goal of contributing to the “corrective literature” (Ryan and Runswick-Cole 2008, 202), I draw on the social model to examine how personal experiences of mothering and disability can be constructed by social categories and expectations. Although I offer the story of only one mother, like other qualitative data, mine is a narrative that can point toward “broader themes in the social, cultural and political” understanding of parenting and disability (C. Rogers 2007, 137). The rehabilitation process we experienced as a family after our daughter Leyna’s aneurysm largely reflected the dominance of the medical model. In contrast to this medical approach, I analyze how the social meanings in categories of identity affect the personal experiences of mothering a disabled child— how the social and political become personal. As Monica Dowling and Linda Dolan (2001, 22) point out, seeing the experiences of families and mothers of children with disabilities as socially constructed removes the sense of inevitability that is often attached to those experiences. Socially constructed experiences can be changed: society can be reconstructed in a way that produces different experiences. My experiences may be particularly helpful for mapping an intersectional understanding of multiple, devalued identities. In addition to facing the new category of disability identity after Leyna’s brain injury, my experiences were complicated by two other social categories. First, my mothering relationship with Leyna and experience of Leyna’s disability are complicated by gender. Having defined myself as a feminist committed to the empowerment and independence of women, I raised my daughter to be an independent-minded young woman. This fact has complicated the ways in which I have experienced and negotiated Leyna’s continuing dependence after brain injury. Second, my mothering of Leyna is complicated by race. I am a white, Canadian woman who is married to an African American and has two black/interracial children. Although disability The Political Is Personal • 247 and race are similar insofar as they engender negative responses in the larger society, being prepared to be the mother of a black/interracial daughter did not mean that I was prepared to be the mother of a disabled black/ interracial daughter. My story is of a mother who, having learned to welcome two socially spurned categories of identity into my life (gender and race), has had much to learn about welcoming a third. Ryan and RunswickCole urge researchers to “incorporate factors such as gender, ethnicity, age, and social class” into experiences of “disablism”—the socially oppressive effects of the negative treatment and attitudes toward disabled people (2008, 207). To that end, I explore how my experience of...