Is There a Gene Responsible for Our Obsession with Perfection? Disability, Ethics and Responsibility

Lalita McHenry

Abstract


My mother gave birth to me.
A small baby like me.
Sing song, put in the cot, cradle as well
Small clothes, small face, small body.
Old photos about me
Born here, Down Syndrome
My father Down Syndrome
My mother Down Syndrome
I’m perfect.
Perfect Baby.
Perfect Child.
Perfect Woman (Rita Halabarec)

Creative works such as those performed by Geelong’s Back to Back Theatre demonstrate how the term disability is being reconstructed, transformed and subverted. Performing artists are actively challenging negative representations of disability by making visible a body seen to have existed largely through the gaze of medical abjection. At the same time, however, prenatal screening, and genetic engineering more broadly, holds out promise for a world where traits like Down syndrome cease to exist. This poem, written by a performer who played in Back to Back Theatre’s 2002 Melbourne Festival production of Soft, offers a challenge to discourses that perpetuate the belief that disability equals imperfection, disadvantage and suffering. Soft grapples with the highly controversial ethical issues of prenatal screening and the pursuit of perfection by asking the question – ‘Is there a gene responsible for our obsession with perfection?’


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References


Albert, Bill. ‘If you tolerate this, your children will be next’, Health Matters 36 (1999), http://www.healthmatters.org.uk/stories/albert.html

Asch, Adrienne. ‘Disability Equality and Prenatal Testing: Contradictory or Compatible?’, Florida State University Law Review 30.2 (2003): 315-342.

Atterton, Peter and Matthew Calarco. On Levinas (CA: Wadsworth, 2005).

Back to Back Theatre. ‘About Us’, http://www.backtobacktheatre.com/

Back to Back Theatre. Soft, unpublished playscript, (2002).

Bernasconi, Robert. ‘What is the question to which ‘substitution’ is the answer?’, in The Cambridge Companion to Levinas, eds. Simon Critchley and Robert Bernasconi (Cambridge: Cambridge University Press, 2002), 234-251.

Botkin, Jeffrey. ‘Prenatal diagnosis and the selection of children’, Florida State University Law Review 30.2 (2003): 265-293.

Cook, Rebecca. ‘Melb Fest Soft’, Inpress Magazine 735 (23 Oct, 2002): 63.

Critchley, Simon. ‘Introduction’, in The Cambridge Companion to Levinas, eds. Simon Critchley and Robert Bernasconi (Cambridge: Cambridge University Press, 2002), 1-32.

Diamond, Elin (ed.). Performance and Cultural Politics (London: Routledge, 1996).

Elam, Keir. The Semiotics of Theatre and Drama (London and New York: Routledge, 2002).

Gladwin, Bruce and Lalita McHenry. Unpublished interview (20 Oct. 2002).

Goggin, Gerard and Christopher Newell. Disability in Australia: Exposing a Social Apartheid (Kensington, NSW: UNSW Press, 2005).

Hubbard, Ruth. ‘Abortion and Disability’, in The Disability Studies Reader, ed. Lennard J. Davis (New York and London: Routledge, 1997), 187-200.

Kuppers, Petra. Disability and Contemporary Performance (New York: Routledge, 2003).

La Fontaine, Michelle. ‘Perfect? An Analysis of the Global Human Genetics Fix’, in Women, Disability and Identity, eds. Asha Hans and Annie Patri (New Delhi: Sage, 2003), 43-55.

Levinas, Emmanuel. Totality and Infinity, trans. Alphonso Lingis ( Dordrecht: Kluwer, 1991a).

Levinas, Emmanuel. Otherwise Than Being or Beyond Essence, trans. Alphonso Lingis (Dordrecht: Kluwer, 1991b).

Levinas, Emmanuel. On Thinking-of-the-Other: Entre Nous, trans. Michael B. Smith and Barbara Harshav (New York: Columbia University Press, 1998).

Lingis, Alphonso. Translator’s Introduction, in Otherwise Than Being or Beyond Essence, by Emmanuel Levinas, trans. Alphonso Lingis (Dordrecht: Kluwer, 1991). 11-20.

Morris, Jenny. ‘Tyrannies of Perfection’, New Internationalist 233 (1992): 16-17. Newell, Christopher. ‘Towards a bioethics of disability’, Interaction 13.3 (2000): 4.

Rothfield, Philipa. ‘Bodies and subjects: medical ethics and feminism’, in Troubled Bodies, ed. Paul Komesaroff (Victoria: Melbourne University Press, 1995), 168-201.

Shakespeare, Tom. ‘Arguing about Genetics and Disability’, Interaction 13.3 (2002): 11-14. http://www.ncid.org.au/documents/13.3.pdf

Shildrick, Margrit. Embodying the Monster (London: Sage Publications, 2002).

Sullivan, Nikki. Tattooed Bodies: subjectivity, textuality, ethics and pleasure (Westport, CT.:

Praeger, 2001).

Thomson, Helen. ‘Brave new theatre’, Review. The Age (21 Oct, 2002): 5.


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