As If You Have a Choice: Autism mothers and the remaking of the human
DOI:
https://doi.org/10.5195/hcs.2013.137Keywords:
Autism, maternal health, feminist phenomenology, disabiilty studiesAbstract
This paper utilizes feminist phenomenology to explore how contemporary representations of autism, and autism mothers, are integrally caught up in western (and now globalizing) understandings of health, happiness and the “normative” human. I examine the historical emergence of “autism mothers” as a new category of identity, and track this alongside a global autism mother recruitment campaign to get at what’s “behind” this phenomenon. I argue that emerging autism mother figures like the feminine warrior are new and contradictory neoliberal subjectivities that contain a most “hateful” unethical and increasingly global duty: the reinscription and intensification of the “normal” human as bourgeois, nondisabled, white and western, and the “new” femininity as “naturally” nurturing and necessarily instrumental. Even more, these new subjectivities are governmental, operating as western colonialist translations of happiness, compelling compulsory participation in increasingly limited, violent, and globalizing frames of normative humanity for us all.References
Ahmed, S. (2004). The cultural politics of emotion. New York: Routledge.
Ahmed, S. (2006). Orientations: Toward a queer phenomenology. GLQ: A Journal of Lesbian and Gay Studies, 12, 543-574.
Ahmed, S. (2007). A phenomenology of whiteness. Feminist Theory, 8, 149-168.
Ahmed, S. (2010). The promise of happiness. Durham, N.C.: Duke University Press.
Althusser, L. (1971). Lenin and philosophy and other essays. (Trans.). B. Brewster. London: NLB.
Autism File. (2013). Retrieved Septebmer 20, 2013 from http://www.autismmediachannel.com/#!back-issues/c18gf
Autism Mothers the Final Cut. (2009). Retrieved September 13, 2013 from http://www.youtube.com/watch?v=sqiyND3RLW4
Autism Mothers Unite Worldwide. (2009). The Autism File, 33, cover page. Retrieved September 20, 2013 from https://www.facebook.com/photo.php?fbid=145784842768&set=a.462139367768.250978.29386872768&type=1&theater
Autism Speaks. (2013). Retrieved September 20, 2013 from http://www.autismspeaks.org/
Autism Speaks Global Autism Public Health Initiative. (2013). Retrieved September 20, 2013 from http://www.autismspeaks.org/science/research-initiatives/global-autism-public-health
Benjamin, W. (1968). Illuminations. New York: Schocken Books.
Bettleheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. New York: The Free Press.
Blum, L. M. (2007). Mother-blame in the prozac nation: Raising kids with invisible disabilities. Gender and Society, 21, 202-226.
Butler, J. (1997). Performative acts and gender constitution: An essay in phenomenology and feminist theory. In K. Conboy, N. Medina & S. Stanbury (Eds.), Writing on the body: Female embodiment and feminist theory, (401-17). New York: Columbia University Press.
Butler, J. (1998). Foreword. In M. Natanson, The erotic bird: Phenomenology in literature, (ix-xvi). Princeton: Princeton University Press.
Campaign, n. (2013). Merriam-Webster. Retrieved September 20, 2013 from http://www.merriam-webster.com/dictionary/campaign
Clarke, J. N. (2012). Representations of autism in US magazines for women in comparison to the general audience. Journal of Children and Media, 6:, 182-197.
Derrida, J. (1995). The gift of death. Chicago: University of Chicago Press.
Gerwitsch, Aron. (1966). Studies in phenomenology and psychology. Evanston, IL: Northwestern University Press.
Foucault, M. (1982). The subject and power. Critical Inquiry, 8, 777-95.
Foucault, M. (2003). Society must be defended: Lectures at the College of France 1975-1976. New York: Picador.
Generation Rescue. (2013). Retrieved September 20, 2013 from http://www.generationrescue.org/
Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.
Hall, S. (1997). Subjects in history: Making diasporic identities. In W. Lubiano (Ed.), The house that race built: Black Americans, U.S. terrain (280-99). New York: Pantheon Books.
Husserl, E. (1970). The crisis of European sciences and transcendental phenomenology. D. Carr (Trans.). Evanston, IL: Northwestern University Press. (Original work published 1954)
Jones, S. C. & V. Harwood. (2012). Representations of autism in Australian print media. Disability & Society, 24, 5-18.
King, T. (2005). The truth about stories: A native narrative. Minneapolis, MN: University of Minnesota Press.
Koren-Karie, N., D. Oppenheim, S. Dolev and N. Yirmiya . (2009). Mothers of securely attached children with autism spectrum disorder are more sensitive than mothers of insecurely attached children. The Journal of Child Psychology and Psychiatry and Allied Disciplines, 50, 643-50.
Ladd-Taylor, M. & L. Umansky. (1998). Introduction. In M. Ladd-Taylor & L. Umansky (Eds.), “Bad” mothers: The politics of blame in twentieth-century America (1-28). New York: New York University Press.
Larner, W. (2000). Neo-liberalism: Policy, ideology, governmentality. Studies in Political Economy, 63, 5-25.
McCarthy, J. (2008). Mother warriors: A nation of parents healing autism against all odds. New York: Penguin Group.
McDonnell, J. T. (1998). On being the “bad” mother of an autistic child. In M. Ladd-Taylor & L. Umansky (Eds.), “Bad” mothers: The politics of blame in twentieth-century America (220-29). New York: New York University Press.
McGuire, A. (2011). The war on autism: On normative violence and the cultural production of autism advocacy. PhD thesis, University of Toronto.
Merleau-Ponty, M. (1962). Phenomenology of perception. C. Smith (Trans.). London: Routledge and Kegan Paul.
Murray, S. (2008). Representing autism: Culture, narrative, fascination. Liverpool: Liverpool University Press.
Myers, B.J., V. H. Mackintosh & R. P. Goin-Kochel. (2009). “My greatest joy and my greatest heartache:” Parents own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670-684.
Nadesan, M. H. (2005). Constructing autism: Unraveling the ‘truth’ and understanding the social. London: Routledge.
O’Brien, C. (2009, April 3). Mothers unite for world autism day: If you want to be heard, you have to get noticed. Mail Online [online], np. Retrieved September 20, 2013 from http://www.dailymail.co.uk/home/you/article-1164799/Mothers-unite-World-Autism-Day--8216-If-want-heard-noticed-8217.html
Refrigerator Mothers. (2003). [Motion Picture]. Chicago: Kartemquin Films.
Ringrose, J. & V. Walkerdine. (2008). Regulating the abject: The TV make-over as site of neo-liberal invention toward bourgeois femininity. Feminist Media Studies, 8, 227-46.
Rosanoff, M. (2013). From Geneva: Wrap-up on the 1st historic WHO conference on autism. Retrieved September 20, 2013 from http://www.autismspeaks.org/blog/2013/09/20/geneva-wrap-historic-1st-who-conference-autism
Rose, N. (1999a). Governing the soul: The shaping of the private self. (2nd ed.). London: Free Association Books.
Rose, N. (1999b). Powers of freedom: Reframing political thought. Cambridge: Cambridge University Press.
Schutz, A. (1967). The phenomenology of the social world. G. Walsh & F. Lehnert (Trans.). Evanston, IL: Northwestern University Press. (Original work published 1932)
Schutz, A. (1970). On phenomenology and social relations. H. Wagner (Ed.). Chicago: University of Chicago Press.
Seligman, M, & Csikszentmaihalyi, M. (2000). Positive psychology: An introduction. American Psychologist, 55, 5-14.
Sinclair, J. (1993). Don't mourn for us. Our Voice: The Newsletter of Autism, 1(3). Retrieved September 23, 2013, from http://web.archive.org/web/20090123205011/http://web.syr.edu/~jisincla/dontmourn.htm
Snow Patrol. (2003). Run. UK: Polydor.
Stiker, HJ. (1999). A history of disability. W. Sayers [Trans.]. Ann Arbor: University of Michigan Press.
The Autism Enigma. (2011). [Motion Picture]. M. Gruner and C. Sumpton (Directors). USA: Cogent/Benger.
Titchkosky, T. (2007). Reading & writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press.
Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto: University of Toronto Press.
Titchkosky, T. and C. Aubrecht. (2009). The anguish of power: Remapping mental diversity with an anticolonial compass. In A. Kemf (Ed.), Breaching the colonial contract: Anti-colonialism in the US and Canada (179-99). Netherlands: Springer.
United Nations. (2013). High level dialogue on health in the post-2015 development Agenda. Meeting report. Retrieved September 20, 2013, from http://www.worldwewant2015.org/health
Walcott, R. (2003). “but I don’t want to talk about that”: Post-colonial and black diaspora histories in video art. In U. Biemann (Ed.), Stuff it: The video essay in the digital age (pp. 58-65). Zurich: Edition Voldemeer.
Walkerdine, V. & H. Lucy. (1989.) Democracy in the kitchen: Regulating mothers and socialising daughters. London: Virago Press.
Wing, L. (1981). Asperger’s Syndrome: A clinical account. Psychological Medicine, 11, 115-129.
Wing, L. (1988). The continuum of autistic characteristics. In G. B. Mesibov & E. Scholpler (Eds.). Diagnosis and assessment in autism (91-110). New York: Plenum Press.
World Health Assembly. (2013a). Comprehensive mental health action plan 2013-2020. WHA66.8, 66th session, 27 May, 2013. Retrieved September 20th, 2013 from http://apps.who.int/gb/ebwha/pdf_files/WHA66/A66_R8-en.pdf
World Health Assembly. (2013b). Comprehensive and coordinated efforts for the management of autism spectrum disorders. EB133.R1, 133rd session, 30 May 2013. Retrieved September 20th, 2013 from http://www.autismspeaks.org/sites/default/files/images/b133_r1-autism_resolution_approved_by_eb133.pdf
Wynter, S. (1992). Rethinking “aesthetics”: Notes toward a deciphering practice. In M. Cham (Ed.). Ex-isles: Essays on Caribbean cinema (237-79). Trenton, New Jersey: African World Press Inc., 237-79.
Wynter, S. (2003). Unsettling the coloniality of being/power/ truth/freedom: Towards the human, after man, its overrepresentation – an argument. CR: The new centennial review, 3, 257-337.
Wynter, S. (2006). On how we mistook the map for the territory and re-imprisoned ourselves in our unbearable wrongness of being of desetre. In L. R. Gordon & J. A. Gordon, (Eds.). Not only the master’s tools: African American studies in theory and practice (107-69). London: Paradigm Publishers.
Young, I. M. (1980). Throwing like a girl: A phenomenology of feminine body comportment motility and spatiality. Human Studies, 3, 137-56.
Downloads
Published
Issue
Section
License
Authors who publish with this journal agree to the following terms:
- The Author retains copyright in the Work, where the term “Work” shall include all digital objects that may result in subsequent electronic publication or distribution.
- Upon acceptance of the Work, the author shall grant to the Publisher the right of first publication of the Work.
- The Author shall grant to the Publisher and its agents the nonexclusive perpetual right and license to publish, archive, and make accessible the Work in whole or in part in all forms of media now or hereafter known under a Creative Commons Attribution 4.0 International License or its equivalent, which, for the avoidance of doubt, allows others to copy, distribute, and transmit the Work under the following conditions:
- Attribution—other users must attribute the Work in the manner specified by the author as indicated on the journal Web site;
- The Author is able to enter into separate, additional contractual arrangements for the nonexclusive distribution of the journal's published version of the Work (e.g., post it to an institutional repository or publish it in a book), as long as there is provided in the document an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post online a prepublication manuscript (but not the Publisher’s final formatted PDF version of the Work) in institutional repositories or on their Websites prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work. Any such posting made before acceptance and publication of the Work shall be updated upon publication to include a reference to the Publisher-assigned DOI (Digital Object Identifier) and a link to the online abstract for the final published Work in the Journal.
- Upon Publisher’s request, the Author agrees to furnish promptly to Publisher, at the Author’s own expense, written evidence of the permissions, licenses, and consents for use of third-party material included within the Work, except as determined by Publisher to be covered by the principles of Fair Use.
- The Author represents and warrants that:
- the Work is the Author’s original work;
- the Author has not transferred, and will not transfer, exclusive rights in the Work to any third party;
- the Work is not pending review or under consideration by another publisher;
- the Work has not previously been published;
- the Work contains no misrepresentation or infringement of the Work or property of other authors or third parties; and
- the Work contains no libel, invasion of privacy, or other unlawful matter.
- The Author agrees to indemnify and hold Publisher harmless from Author’s breach of the representations and warranties contained in Paragraph 6 above, as well as any claim or proceeding relating to Publisher’s use and publication of any content contained in the Work, including third-party content.
Revised 7/16/2018. Revision Description: Removed outdated link.