Social movements, knowledge and public policy: the case of autism activism in Canada and the US

Abstract

This paper explores the role of social movements in the policy process and, in particular, the ways in which movements interact with, access, and deploy expert knowledge. In the technocratic model, citizens are conceptualized as undifferentiated, rather than considered in terms of distinctive identities or interests. Their inclusion in policy-making is viewed as a technical problem to be ‘solved’ through forms of citizen engagement, rather than viewing citizens as active agents in the mobilization of distinctive knowledges. Citizens, we argue, are more than the undifferentiated lump that appears in the technocratic model under the guise of citizen engagement. Drawing on a case study of autism activism in Canada and the US, we demonstrate the range of ways in which civil society actors both deploy and contest expert knowledge in the policy process, and discuss the implications for how we conceptualize knowledge mobilization in policy processes.

Keywords:

• social movements
• knowledge
• autism
• health policy

Acknowledgements

This research was supported by a grant from the Social Sciences and Humanities Research Council of Canada. We would like to acknowledge the excellent research assistance of Audrey L'Esperance, Tracy Verhoeve, and Sarah Wiebe. We would also like to thank the Journal's reviewers for a careful reading of the paper and helpful suggestions for revision. In addition, Aletta Norval and Archon Fung provided thoughtful comments on a previous version of the paper, which was presented at the annual meeting of the American Political Science Association (Toronto, Canada, September 2009). We are indebted to the research participants who agreed to be interviewed for this project, and to Jim Sinclair, who facilitated access to Autreat, an annual retreat for autistic people where many of these interviews were conducted.

Notes

1. Semi-structured interviews were conducted by Michael Orsini in accordance with ethical guidelines for research involving human subjects, and received approval from the Research Ethics Board of the University of Ottawa. In addition to the University's ethics approval, Michael Orsini received approval to attend the annual event Autreat, at which many of the interviews identified here were conducted. The organizing committee of Autreat allowed Orsini and research assistant Audrey L'Esperance to attend the event, but requested that participants not be approached for an interview unless they signed a sheet indicating they were willing to do so. Orsini was permitted to provide a brief overview of the research project to event participants, inviting them to sign a contact sheet if they wished to be interviewed.

2. While there is a seemingly natural tendency to compare the two examples, the differences between the two cases require greater elaboration for which there is insufficient space here.

3. Herd immunity is a term used primarily in the field of epidemiology to defend the use of mass vaccination campaigns. Public health officials worry that when more people who can be vaccinated choose not to vaccinate, there are fewer members of the ‘herd’ protecting those who cannot be vaccinated for medical, religious, or political reasons.

4. We are using the term knowledge in this paper to refer to organized expertise around which authoritative claims are asserted and validated (or not).

5. Auton (Guardian ad litem of) v. British Columbia (Attorney General) 2004 SCC 78.

6. Auton (Guardian ad litem of) v. British Columbia (Attorney General) 2004 SCC 78, para 5.