Between the Medical and the Moral: Disability and Domination

Ignacio Aguiló (ignacio.aguilo [at] manchester.ac.uk)

In July 2013, the journal Nature announced that a group of scientists from Massachusetts University were in the process of developing a genetic therapy that could, in the medium term, erase Down syndrome. That the news was reproduced worldwide and celebrated as a great step in the definitive ‘correction’ of this condition is an indicator of the degree to which Down syndrome, and deficiencies in general, are still defined in public discourses as primary biological and natural phenomena in need of ‘eradication’, rather than as social constructions subject to diverse relationships of domination. In this post I aim to offer a political reading of disabilities, taking as a case study the different discourses constructed around Miguel Tomasín, drummer of Reynols (one of my favourite bands), who has Down syndrome.

reynols (1)

Compared to other historically subalternised identities, domination over individuals with disabilities still goes largely unnoticed and tends to be perceived as natural and common sense (Pothier and Devlin, 2006). While in Western countries the racist and hetero-sexist overtones of eugenic practices have been relatively extirpated from public discourses (or, at least, tamed down), this is not the case when it comes to disabilities.

The selective abortion of foetuses identified as disabled is a socially accepted procedure in many nations. The social consensus around this practice indicates that a disabled life is not worth living, which positions those who live with a disability as inferior.[1] In these discourses about disability, the importance of ideas such as dignity and compassion is central. The death of people with disabilities on the basis of humanitarian reasons usually generates empathy, as exemplified by the Latimer case. Robert Latimer, a Canadian farmer, decided to kill his disabled child in 1993, arguing compassionate motives. A poll by Ipsos MORI found that 73% of Canadians believed that he deserved a more lenient sentence and 41% felt that ‘mercy killing’ should be de-criminalised.

All of the above shows how the forms of exclusion and subordination imposed on disabled people are more effective than other apparatus for domination, like sexism and racism, since they continue to present disability as a personal tragedy and a natural fact. This also implies that all forms of disability are reduced to a single deviation in relation to the able body, also understood as a single, constant and fixed entity (Carlson, 2005). Michel Foucault (1989, 2003), among others, has extensively analysed the medicalisation of the social and the regulation of bodies according to productivity and ability as part of the establishment of modern biopolitical governmentality. Deborah Kaplan (2000) argues that, particularly in the case of disability, this medical model is intersected and supplemented by a ‘moral model’, articulated around notions such as charity and compassion. This implies that disabled people are not only presented as requiring regulation, rectification and eradication, but also as in need of sympathy and sensibility – all of which contributes to masking and naturalising domination by ‘normal’ society.

Now let us focus on the case of Tomasín and Reynols. Formed in 1993 in Buenos Aires, Reynols achieved cult following worldwide, releasing more than 60 records in Argentina, the UK, the USA, Germany, France, Italy and Japan.[2] They also toured extensively in all these countries. Reynols’ music, while highly unclassified, can be described as oriented to improvisation, droning and experimentalism. Reynols’ oeuvre is also influenced by the historical avant-garde: their first release, Gordura vegetal hidrogenada (Hydrogenated Vegetable Fat), consisted of a case (without a disc) and a booklet with the legend ‘This CD dematerialized fifteen seconds ago’. Other Reynols projects included a 10,000 farm chickens’ symphony, an album made with blank cassette tapes and a series of recordings of celebrities’ graves. They disbanded in 2004, the same year in which Argentinian director Néstor Frenkel released the documentary Buscando a ReynolsHere it is possible to listen to some of their music:

Reynols, Betley Welcomes Careful Drivers & Blackbean And Placenta Tape Club (1999) [Accessed 24 August 2015]

Due to Tomasín’s disability, Reynols attracted considerable attention from the Argentinian mainstream media. News reports were characterised by statements such as ‘Miguel Tomasín: A moving story’ and ‘A life’s example: In spite of his disability, Miguel is part of a group in which he can play the music he loves’.

From Buscando a Reynols, dir. by Néstor Frenkel (2004) [Accessed 24 August 2015]

The media’s coverage of Tomasín exemplifies the intersection of the medical paradigm, which marks the deviation (‘in spite of his disability’), with the moral model, which offers viewers a space for condescending perspectives which in turn reinforces their identification as ‘normal’.

Disability is an individual condition, which is entirely the individual’s responsibility, and hence Tomasín’s efforts to accommodate mainstream society should be celebrated. By presenting him as someone who courageously accepts his disability, the media transforms him into what Gerard Goggin and Christopher Newell (2005) denominate the ‘super-crip’. In the case of Reynols, headlines and expressions such as ‘Integration and rock and roll’ and ‘It is so nice to see a group doing this good deed’ suggest that the only reasons for ‘normal’ people to interact with disabled people are altruism and compassion, since the latter do not possess any intrinsic value as individuals.

What happens when it is Tomasín himself who speaks about his disability? The following intervention in Hablemos claro – one of Argentina’s most popular talk shows of the late 1990sis interesting, in the sense that it suggests the possibility of a critique of power dynamics by means of an epistemological inversion that actually identifies the normal body as the problem.


From Buscando a Reynols [Accessed 24 August 2015]

Tomasín challenges the narrative of the talk show, articulated around the moral model that infantilises people with Down syndrome by presenting them as ontologically kind and innocent. He inverts the terms of the discourse, by stressing that a disabled person, like anybody else, can have and express selfish feelings. He is very much aware that his chances of gaining employment, particularly during the recession that affected Argentina at the turn of the twenty-first century, were significantly lower than those of normal people. His egoism also expresses a critique of the normal body, a body that is better prepared – and disciplined – to produce according to the demands of a capitalist economy. What this epistemological inversion in Tomasín’s discourse reveals is the political dimension of the hegemonic discourse on disability, hence de-naturalising the power relations between normal and disabled people.

In this post I have carried out a brief analysis of Down syndrome from a political perspective that highlights how this condition is defined by power relationships and discourses. By examining how the figure of Tomasín has been described in the media, I have shown the primacy of the medical and moral models in the ways in which mainstream Argentinian media understands disability. As the reference to Tomasín’s intervention exemplifies, the possibility of a critique of the discrimination of disabled people requires likewise a critique of the epistemological foundations of this paradigm. Considering recent welfare cuts for the disabled by the Tory government, it is needless to say that the discussion is very relevant to the British context.

References

Carlson, Licia. 2005. Docile Bodies, Docile Minds: Foucauldian Reflections on Mental Retardation. In: S. Tremain. 2005. Foucault and the Government of Disability. Ann Arbor: University of Michigan Press. pp. 133-52.

Goggin, Gerard, & Newell, Christopher. 2004. Fame and Disability: Christopher Reeve, Super Crips, and Infamous Celebrity. M/C Journal: A Journal of Media and Culture, 7(5). pp. 1-5.

Kaplan, Deborah. 2000. The Definition of Disability: Perspective of the Disability Community. Journal of Health Care, Law and Policy, 3. pp. 352-64.

Foucault, Michel. 2003. “Society Must Be Defended”: Lectures at the Collège de France, 1975-1976. Translated by David Macey. New York: Picador.

Foucault, Michel. 1989. The Birth of the Clinic: An Archaeology of Medical Perception. Translated by A.M. Sheridan. London: Routledge.

Frenkel, Néstor. 2004. Buscando a Reynols. Argentina/A.C.Cine.

Pothier, Dianne, & Devlin, Richard. 2006. Introduction: Toward a Critical Theory of Dis-Citizenship. In: Pothier & Richard. 2006. Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law. Vancouver: The University of British Columbia. pp. 1-24.

[1] Contrary to this, sex-selective abortion, a practice common in countries such as India and China, is often presented as controversial and backward by the Western media.

[2] For the complete discography of Reynols, please visit their webpage at Discogs: http://www.discogs.com/artist/53815-Reynols [Accessed 24 August 2015].

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s