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

Critical Policy Studies

Volumn 4, Issue 1, 2010, Pages 38-57

  Orsini, Michael ^a   Smith, Miriam ^b  

^a UNIVERSITY OF OTTAWA   (Canada)

^b YORK UNIVERSITY   (Canada)

Author keywords

Autism; Health policy; Knowledge; Social movements

Indexed keywords

EID: 79958752740     PISSN: 19460171     EISSN: 1946018X     Source Type: Journal    
DOI: 10.1080/19460171003714989     Document Type: Article

References (57)

1. AASPIRE Project. 2009. Academic autistic spectrum partnership in research and education. Available from: http://www.aaspireproject.org [Accessed on 4 December 2009].
2. Amundson, R., 2000. Against normal function. Studies in history and philosophy of biological and biomedical sciences, 31 (1), 33-53.
3. Autism Society of America. 2009. Autism Society Foundation. Available from: http://www.autismsociety. org/site/PageServer?pagename=research_asafoundation [Accessed 4 December 2009].
4. Autism Speaks. 2009. An interview with Dr. Geri Dawson, Chief Science Officer, Autism Speaks, about the organization's research funding and position on vaccines and autism. Available from: http:// www.autismspeaks.org/science/science_news/geri_dawson_vaccines_autism_interview.php [Accessed 4 December 2009].
5. Baggs, A., 2007. In my language. Available from: http://www.youtube.com/watch?v=JnylM1hI2jc [Accessed on 16 February 2010].
6. Baker, D.L., 2006. Autism as public policy. In: D. Pothier and R. Devlin, eds. Critical disability theory: essays in philosophy, politics, policy, and law. Vancouver: UBC Press, 177-194.
7. Barnes, C., 1998. The social model of disability: a sociological phenomenon ignored by sociologists. In: T. Shakespeare, ed. The disability reader: social science perspectives. London: Continuum, 65-78.
8. Brown, P., and Zavestoski, S., eds, 2005. Social movements in health. Oxford: Blackwell Publishing.
9. Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R. and Gasior Altman, R., 2004. Embodied health movements: new approaches to social movements in health. Sociology of health and illness, 26 (1), 50-80.
10. Canadian Broadcasting Corporation. 2004. Top court: B.C. doesn't have to fund autism treatment, 22 November. Available from: http://www.cbc.ca/canada/story/2004/11/19/ autism_supremecourt041119.html [Accessed 4 December 2009].
11. Canadian Institutes of Health Research. 2009. About knowledge translation. Available from http:// www.cihr-irsc.gc.ca/e/29418.html [Accessed 4 December 2009].
12. Chamak, B., 2008. Autism and social movements: French parents' associations and international autistic individuals' organizations. Sociology of health and illness, 30(1), 76-96.
13. Code, L., ed., 2000. Encyclopedia of feminist theories. London and New York: Routledge.
14. Collins, H.M. and Evans, R., 2002. The third wave of science studies: studies of expertise and experience. Social studies of science, 32(2), 235-296.
15. Collins, H.M. and Evans, R., 2009. Rethinking expertise. Chicago: University of Chicago Press.
16. Davidson, J., 2008. Autistic culture online: virtual communication and cultural expression on the spectrum. Social & cultural geography, 9 (7), 791-806.
17. Dawson, M., 2004. Factum of the intervener. Available from: http://www.sentex.net/.nexus23/ naa_fac [Accessed 4 December 2009].
18. Dawson, M., 2007. Autism advocates do not take autism seriously, 18 February. Available from: http://autismcrisis.blogspot.com/2007/02/autism-advocates-do-not-take-autism.html [Accessed 4 December 2009].
19. Dawson, M., 2009. Elizabeth Svoboda's autism culture movement: a letter, 27 April. Available from: http:// autismcrisis.blogspot.com/2009/04/elizabeth-svobodas-autism-culture.html [Accessed 16 February 2010].
20. Epstein, S., 1996. Impure science: AIDS, activism, and the politics of knowledge. Berkeley, Los Angeles & London: University of California Press.
21. Epstein, S., 2008. Patient groups and health movements. In: E. J Hackett, O. Amsterdamska, M. Lynch and J. Wajcman, eds. The handbook of science and technology studies. Cambridge and London: The MIT Press, 499-539.
22. Fischer, F., 2009. Democracy and expertise: reorienting policy inquiry. Oxford: Oxford University Press.
23. Freeman, S., 2003. Science for sale in the autism wars: medically necessary autism treatment, the court battle for health insurance and why health technology academics are enemy number one. Langley, BC: SFK Books.
24. Gamson, W., 1992. Talking politics. Cambridge and New York: Cambridge University Press.
25. Gottweis, H., 1998. Governing molecules: the discursive politics of genetic engineering in Europe and the United States. Cambridge and London: The MIT Press.
26. Grandin, T., 1996. Thinking in pictures: and other reports from my life with autism. New York: Vintage Books.
27. Hacking, I., 2000. The social construction of what? Cambridge, MA and London: Harvard University Press.
28. Hajer, M., 2003. Policy without polity? Policy analysis and the institutional void. Policy sciences, 36 (2), 175-193.
29. Haraway, D., 1988. Situated knowledges: the science question in feminism and the privilege of partial perspective. Feminist studies, 14 (3), 575-599.
30. Harding, S. 1986. The science question in feminism. Ithaca, NY: Cornell University Press.
31. Hess, D., 2007. Alternative pathways in science and industry: activism, innovation and the environment in an era of globalization. Cambridge, MA and London: The MIT Press.
32. Hobson West, P., 2003. Understanding vaccination resistance: moving beyond risk. Health risk and society, 5 (3), 273-283.
33. Holmes, D., Murray, S., Perron, A. and Rail, G., 2006. Deconstructing the evidence-based discourse in health sciences: truth, power and fascism. International journal of evidence based healthcare 4, 180-186.
34. Howlett, M., 2009. Policy analytical capacity and evidence-based policy-making: lessons from Canada. Canadian public administration, 52, (2), 153-175.
35. Laforest, R., and Orsini, M., 2005. Evidence-based engagement in the voluntary sector: lessons from Canada. Social policy & administration, 39 (5), 481-497.
36. Manfredi, C. and Maioni, A., 2005. Litigating innovation: health care policy and the Canadian Charter of Rights and Freedoms. Paper presented at the annual meeting of the Canadian Political Association, London, Ontario, 1-4 June.
37. McCarthy, J., 2008. Mother warriors: a nation of parents healing autism against all odds. New York: Dutton.
38. Medicare for Autism Now Society. 2009. Seeing that justice is done. Available from: http:// www.medicareforautismnow.org/Home_Page.html [Accessed 4 December 2009].
39. Moore, K., 2008. Disrupting science: social movements, American scientists, and the politics of the military, 1945-1975. Princeton, NJ: Princeton University Press.
40. Mykhalovskiy, E. and Weir, L., 2004. The problem of evidence-based medicine: directions for social science. Social science & medicine, 59 (5), 1059-1069.
41. Norval, A., 2007. Aversive democracy. Cambridge: Cambridge University Press.
42. Novas, C., 2006. The political economy of hope: patients' organizations, science and biovalue. BioSocieties, 1 (3), 289-305.
43. Offit, P.A., 2008. Autism's false prophets. New York: Columbia University Press.
44. Orsini, M., 2009. Contesting the autistic subject: biological citizenship and the autism/autistic movement. In: D. Holmes and S. Murray, eds. Critical interventions in the ethics of healthcare. Aldershot: Ashgate Publishing, 115-132.
45. Pierson, P., and Skocpol, T., 2002. Historical institutionalism in contemporary political science. In: I. Katznelson and H. Milner, eds. The state of the discipline. New York: Norton, 693-721.
46. Rabinow, P., 1996. Essays on the anthropology of reason. Princeton, NJ: Princeton University Press.
47. Rose, N., 2006. The politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ: Princeton University Press.
48. Rose, N. and Novas, C., 2005. Biological citizenship. In: A. Ong and S.J. Collier, eds. Global assemblages: technology, politics and ethics as anthropological problems. London: Blackwell, 439-463.
49. Sinclair, J., 1999. Why I dislike person-first language. Available from: http://www.jimsinclair.org
50. Smith, D., 1987. The everyday world as problematic. Toronto: University of Toronto Press.
51. Standing Senate Committee on Social Affairs, Science and Technology, 2007. Pay now or pay later: autism families in crisis. Ottawa: Senate of Canada.
52. Svoboda, E., 2009. I am not a puzzle. I am a person, 27 April 2009. Available from: http:// www.salon.com/news/environment/feature/2009/04/27/autistic_culture/print.html [Accessed 16 February 2010].
53. Tarrow, S., 1998. Power in movement: social movements and contentious politics. Cambridge, New York and Melbourne: Cambridge University Press.
54. Tetroe, J.M., et al., 2008. Health research funding agencies' support and promotion of knowledge translation: an international study. The Milbank quarterly, 86 (1), 125-155.
55. Turner, S., 2001. What is the problem with experts? Social studies of science, 31 (1), 123-149.
56. Wakefield, A.J. et al, 1998. Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet, 351 (9103), 637-641.
57. Wolman, D., 2008. The truth about autism: scientists reconsider what they think they know. Wired magazine, 25 February.