Co-constructed Auto/Biographies in Dwarfism Mothering Research: Imagining Opportunities for Social Justice
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In this chapter, I reflect on my experiences as an average statured mother to a child with dwarfism, researching within the community. The notion of justice is intrinsically tied into our social constructions of humanity and what it means to be human. As a researcher, I question whether dwarfism could ever be separated from the exploitative historical and cultural portrayals which have plagued and blighted our fight for social justice both inside and outside of the community. In this chapter, I explore intrusive interactions with ‘outsiders’ which reinforce my fears that the Dwarf body is seen as problematic and in need of ‘normalisation’. This chapter is therefore an auto/biographical reflection of my blurred identities as a mother/researcher and my personal pursuit of social justice.
- Ablon, J. (1984). Little People in America: The Social Dimensions of Dwarfism. New York: Praeger.Google Scholar
- Adelson, B. (2005). The Lives of Dwarfs: Their Journey from Public Curiosity Toward Social Liberation. New Brunswick, NJ: Rutgers University Press.Google Scholar
- Adler, P., & Adler, P. (1997). Parent-as-Researcher: The Politics of Researching in the Personal Life. In R. Hertz (Ed.), Reflexivity and Voice (pp. 21–44). London: Sage.Google Scholar
- Berger, R., & Quinney, R. (2005). Storytelling Sociology: Narrative as Social Inquiry. London: Lynne Rienne.Google Scholar
- Bogdan, R. (1988). Freak Show: Presenting Human Oddities for Amusement and Profit. Chicago: University of Chicago Press.Google Scholar
- British Sociological Association. (2017). Statement of Ethical Practice for the British Sociological Association [online]. Available from https://www.britsoc.co.uk/media/24310/bsa_statement_of_ethical_practice.pdf. Last Accessed on 14 August 2018.
- Cokley, R. (2018). On Parenting and Consent: When Sharing Isn’t Caring. Rewire News. Available here https://rewire.news/article/2018/05/09/parenting-consent-sharing-isnt-caring/. Last Accessed on 30 July 2018.
- Dasen, V. (2013). Dwarfs in Ancient Egypt and Greece. Oxford: Oxford University Press.Google Scholar
- Ellis, C. (2009). Revision: Autoethnographic Reflections on Life and Work. Walnut Creek, CA: Left Coast Press.Google Scholar
- Fairclough, N. (2010). Discourse and Social Change. Cambridge: Polity Press.Google Scholar
- Freeman, J. (2015). Remaking Memory: Autoethnography, Memoir and the Ethics of Self. Faringdon, Oxfordshire: Libri Publishing.Google Scholar
- Fuchs, H. (2018). BioMarin Doses First Participant in Phase 2 Study of Vosoritide for Treatment of Infants and Young Children with Achondroplasia. Cision PR Newswire. Available here https://www.prnewswire.com/news-releases/biomarin-doses-first-participant-in-phase-2-study-of-vosoritide-for-treatment-of-infants-and-young-children-with-achondroplasia-300666321.html. Last Accessed 30 July 2018.
- Giorgio, G. A. (2013). Reflections on Writing Through Memory in Autoethnography. In S. Holman Jones, T. E. Adams, & C. Ellis (Eds.), Handbook of Autoethnography (pp. 406–424). Walnut Creek, CA: Left Coast Press.Google Scholar
- Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Harmondsworth: Penguin.Google Scholar
- Grant, E. (2016). Laughing at Dwarfism Is the Last Acceptable Prejudice—But Don’t Seek My Approval for Your Intolerance. The Independent. Available here https://www.independent.co.uk/voices/laughing-at-dwarfism-is-the-last-acceptable-prejudice-but-dont-seek-my-approval-for-your-intolerance-a6879106.html. Last Accessed on 30 July 2018.
- Grant, E. (2018). Verne Troyer’s Tragic Death Underlines the Harm Mini-Me Caused People with Dwarfism. The Guardian. Available here https://www.theguardian.com/film/2018/apr/23/verne-troyer-mini-me-dwarfism-abuse-austin-powers. Last Accessed on 30 July 2018.
- Kittay, E. F. (1999). Love’s Labor: Essays on Women, Equality and Dependency. New York: Routledge.Google Scholar
- Kittay, E., & Feder, E. (2002). The Subject of Care: Feminist Perspectives on Dependency. Oxford: Rowman and Littlefield.Google Scholar
- Koren, Y., & Negev, E. (2004). In Our Hearts We Were Giants: The Remarkable Story of the Lilliput Troupe—A Dwarf Family’s Survival of the Holocaust. New York: Carroll and Graf Publishers.Google Scholar
- Landsman, G. (2009). Reconstructing Motherhood and Disability in the Age of ‘Perfect’ Babies. New York: Routledge.Google Scholar
- Miller, T., & Bell, L. (2002). Consenting to What? Issues of Access, Gate-Keeping and ‘Informed’ Consent. In M. Mauthner, M. Birch, J. Jessop, & T. Miller (Eds.), Ethics in Qualitative Research (pp. 53–69). London: Sage.Google Scholar
- Rogers, C. (2003). The Mother/Researcher in Blurred Boundaries of a Reflexive Research Process. Auto/Biography, XI(1 and 2), 47–54.Google Scholar
- Rogers, C. (2013). Intellectual Disability and Mothering: An Engagement with Ethics of Care and Emotional Work. In C. Rogers & S. Weller (Eds.), Critical Approaches to Care: Understanding Caring Relations, Identities and Cultures (pp. 132–143). London: Routledge.Google Scholar
- Rogers, C. (this volume). Missing Data: The Sociological Imagination Beyond the Crime. In J. Parsons & A. Chappell (Eds.), The Palgrave Macmillan Handbook of Auto/Biography. Houndmills: Palgrave.Google Scholar
- Sparkes, A. C. (2002). Autoethnography: Self-Indulgence or Something More? In A. Bochner & C. Ellis (Eds.), Ethnographically Speaking: Autoethnography, Literature, and Aesthetics. Walnut Creek, CA: AltaMira Press.Google Scholar
- Steinberg, S. B. (2017). Sharenting: Children’s Privacy in the Age of Social Media. Emory Law Journal, 66(4), 839–884.Google Scholar
- Tillmann, L. M. (2009). Body and Bulimia Revisited: Reflections of “A Secret Life”. Journal of Inquiry, 15(2), 545–560.Google Scholar
- Toyosaki, S., & Pensoneau-Conway, S. L. (2013). Autoethnography as a Praxis of Social Justice: Three Ontological Contexts. In S. Holman Jones, T. Adams, & C. Ellis (Eds.), Handbook of Autoethnography (pp. 557–575). Walnut Creek, CA: Left Coast Press.Google Scholar
- Van Dijk, T. (1995). Aims of Critical Discourse Analysis. Japanese Discourse, 1(1), 17–25.Google Scholar
- Van Dijk, T. (1996). Discourse, Power and Access in Texts and Practice: Readings in Critical Discourse Analysis (C. R. Caldas-Coulthard & M. Coulthard, Eds., pp. 84–104). London: Routledge.Google Scholar