Academic journal article Health Sociology Review

Embodying Experience and Expertise: Comparing Mother and Intended-Mother Activism in the Cases of Infertility and Autism

Academic journal article Health Sociology Review

Embodying Experience and Expertise: Comparing Mother and Intended-Mother Activism in the Cases of Infertility and Autism

Article excerpt

Introduction

In recent years, women have used their position as mothers or intended mothers to influence policy debates over access to care for autistic children and to fertility treatments (see Baker & Steuernagel, 2014; Panitch, 2008; Russell & Norwich, 2012; Ryan & Cole, 2009; Throsby, 2010). While the role of advocate is familiar to many parents and intended parents, this advocacy has developed at a level of frequency and complexity not faced by many parents who enter the political sphere. While it might be challenging for women in both cases to position themselves as credible interveners in highly specialised environments, women who have entered the political arena have seen some success in mobilising their experiential, situated knowledge to influence policy and debates. This paper examines how mothers and intended mothers co-produce knowledge about infertility and autism in Canada, thereby contributing to how we understand these two embodied conditions, even if there are many unresolved questions about the gendered assumptions that continue to be reflected in mother-led advocacy, especially the idea that mother-led activism was accidental, never conscious or intended. This way of thinking about advocacy and activism has the curious effect of disembodying the activist from the activism itself, as if an individual is somehow removed from and unaware of their own political action.

Our first goal then is to provide some empirical discussion of this multi-layered phenomenon. Issues of access to fertility treatments and to specialised care for autistic children provide an illuminating vantage point from which to study how women mobilise their embodied experience as (intended) mothers,1 and to what extent this experience is valorised as a distinct form of expertise in policy-making. Second, we seek to situate mothers' embodied activism in the social movement and public policy literatures. Increasingly, individuals experiencing health problems or caring for those with health issues are emerging to counter the stigma that often accompanies these conditions. Groups representing individuals living with these conditions have begun to take their own respective seats at the table, mobilising and communicating their own experiential knowledge, perspectives that would have been previously communicated by medical practitioners or other experts speaking on their behalf.

Mothers are able to locate blame and articulate claims in a specific manner, challenging or redefining accordingly the role of the state, the authority of professionals, and their relationship to other families. In more conventional policy terms, mothers and intended mothers have articulated their experiences and expertise in order to influence the 'problem definition' phase of policy-making. In order to fully understand the political action of (intended) mothers, however, we need to contrast their experiences with the discipline-centred expertise that is generally regarded as authoritative in the policy process. Mothers and intended mothers mobilise knowledge that lies at the intersection of medical expertise and social experience. They engage with and vigorously challenge medical expertise in order to have their experiences recognised as socially legitimate and medically relevant. In doing so, they construct narratives around lived experiences of infertility and autism. Hence, they contribute to the medicalisation of infertility and autism by challenging medical understandings of these conditions; by influencing medical practitioners; and by mobilising medical and experiential knowledge in the political spheres.

Here, the gendered experience of (intended) mothers stands out when contrasted with the medical expertise surrounding infertility and autism therapies or treatments. The experience of infertile women and mothers of autistic children is discussed with an eye to appreciating how these embodied experiences - albeit different in nature - can lead to similar social and political dynamics. …

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