Embodying experience and expertise: comparing mother and intended-mother activism in the cases of infertility and autism

ABSTRACT

This paper compares the advocacy of mothers and intended mothers in the fields of autism and infertility. Mothers and intended mothers have developed a special competence in dealing with professionals, and in negotiating the delicate balance between expert medical discourses and expertise grounded in their situated knowledge and experiences. Drawing on the social movement and public policy literature, we seek to disrupt taken-for-granted assumptions about the gendered role of women and mothers in these complex and emotionally charged policy fields. We argue that (intended) mothers are far more likely than other women to take on the major advocacy role considering their need to respond to bodily, social, and/or cultural ‘failures’ imposed on them by the medical establishment. Issues of access to fertility treatments and care for autistic children not only provide a vantage point from which to study their experience in the policy arena, but also to ask broader questions about the role of the welfare state and the shifting authority of experts in policy processes.

KEYWORDS:

• Mothers
• autism
• infertility
• activism
• experience
• expertise

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1 We use (intended) mother instead of ‘mother and intended-mother’ in order to simplify the text.

2 These interviews were conducted during Audrey L'Espérance Fonds Québécois de Recherche sur la Société et la Culture doctoral research. See, L'Espérance, A. (2013). Fertilize-this: framing infertility in Quebec, Ontario and England between 1990 and 2010 (Unpublished doctoral dissertation). University of Ottawa, Ottawa, Canada.

3 The autism research was funded by a grant from the Social Sciences and Humanities Research Council of Canada #410–2007–0256.

4 See http://www.medicareforautismnow.org.

Additional information

Funding

This work was supported by Fonds Québécois de Recherche sur la Société et la Culture (FQRSC) and Social Sciences and Humanities Research Council of Canada.