Abstract
A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable citizenry. I outline the logic of inclusive and eugenic world building, explain the role of the ‘normate’ in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations.
A version of this chapter was previously published in the Journal of Medical Humanities.
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Notes
- 1.
This question became clear to me as I was researching a lesser known aspect of the Holocaust, the Nazi T4 programme. From 1939 through the end of World War II in 1946, Nazi Germany undertook a eugenic cleansing programme that began with forced sterilisation of disabled citizens in the mid-1930s and evolved into a eugenic euthanasia initiative to eradicate disabled citizens in greater Germany. An ideology of biological inferiority and superiority based in historical prejudices and traditional exclusions undergirded the selection process for the worthy and unworthy. The early Nazi nation-building initiative of forced sterilisation and eugenic euthanasia targeted citizens understood as inferior on the basis of a capacious conceptualisation of what we now consider disabilities. The purpose of the Nazi eugenic cleansing programme was to shape an imagined community of citizens intended to comprise the national body. The fundamental premise for eliminating citizens deemed biologically inferior was that they consumed national resources without contributing to the national good. Although these murders and sterilisations were framed as acts of mercy aimed at alleviating suffering, the rationale underpinning this eugenic euthanasia programme was that people with disabilities were ‘useless eaters’ whose lives were ‘unworthy of life’ (Hoche and Binding 1920).
There are several comprehensive histories of the Nazi eugenic euthanasia programme called T4. The most comprehensive and focused are Burleigh (1994) and Friedlander (1995). For additional reading on T4, see also Black (2003), Heberer (2001), and Müller-Hill (1998).
There is a significant ethical difference between the Nazi programme of eugenic euthanasia and current reproductive eugenic practices aimed at eliminating supposedly unhealthy babies. It has been argued quite thoroughly that the Nazi eugenic programme was coercive and state-sponsored while reproductive technologies are shaped by parental choice. Those are significant differences that I am not able to fully elaborate here. For my purposes in this chapter, I want to point out the eugenic logic that underpins both cultural projects.
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- 3.
- 4.
Eugenic ideology followed by implementation throughout the modernising Western world arose in the late 1800s and came to prominence in the first decades of the twentieth century as a progressive scientific and political initiative that would ostensibly improve the human race by encouraging people of higher value to reproduce and eliminating people of lower value. Germany and the United States collaborated on eugenics research and enacted state-sponsored forced sterilisation in the first decades of the twentieth century. Nazi Germany took eugenic thinking to its logical conclusion with a eugenic euthanasia programme that exterminated citizens deemed unworthy due to supposedly unassailable biological inferiority. Such an enactment of eugenic world building could be carried out in a totalitarian regime in a way not possible in modern democratic orders, even though widespread consensus about the need to eugenically shape the national body existed in the United States and other Western nations. On eugenics in Western culture, see Bruinius (2006), Cogdell (2004), Galton (1883), Haller (1984), Hasia (1996), Kevles (1985), Kühl (1994), Lombardo (2008), and Mitchell and Snyder (2003).
- 5.
Whereas the eugenic world building of the first half of the twentieth century was state-sponsored worldwide, the continuing eugenic world building in the United States and capitalist democracies is carried out under the banner of liberalism and freedom of choice. For more on this topic, see Agar (2004), Buchanan, Brock, Daniels, and Wikler (2000), Elliott (2003), Garland-Thomson (‘Human Biodiversity Conservation’, 2015b), Habermas (2003), Hvistendahl (2011), Kitcher (1996), Parens (2005, 2006), Parens and Asch (2007), Robertson (1994), Rose (2007), Sandel (2007), and Saxton (1998).
- 6.
- 7.
Nicholas Agar lays out the logic of what I am calling here ‘normate potentiality’ in Liberal Eugenics (2004). Habermas (2003) has questioned the openness of a future scripted by parental decision and medical technology. On enhancement, selection, and reproduction, see also Elliott (2003), Hubbard (2006), Parens (2005, 2006), Parens and Asch (2007), Robertson (1994), and Rose (2007).
- 8.
One obvious reading is that the novel/film uses this odd temporality of a futuristic plot set in the past to explore the ethics of human cloning and coercive organ harvesting. For other films that critique the global traffic in organ harvesting, see the feature films Dirty Pretty Things (2002) and Repo Men (2010), as well as the documentary film, The Market (2010). These narrative critiques generally focus on the coercive commerce of economic exploitation in which nondisabled, economically disadvantaged people exchange both their organs—and frequently their able-bodied status—to serve economically privileged disabled people.
Although Never Let Me Go does critique cloning and the traffic in organs by encouraging readers to identify with the clones rather than the beneficiaries of these medical practices, the novel is not fundamentally science fiction even though the plot’s premise involves futuristic scientific procedures about which there is a current ethical debate, as several perceptive critics and reviewers have noted (Harrison 2005, Kerr 2005, and Menand 2005).
- 9.
The critical concepts of defamiliarising, denaturalising, or making a phenomenon strange have been explicated by various theorists. The particular mechanism at work here arises when we become inured to that which is natural and familiar so that we do not question or perhaps even notice the phenomenon’s existence or logic. Our blindness or naiveté is then disrupted when something occurs to make us understand or see this phenomenon in new ways; that which was familiar/natural then becomes new, strange, and/or set apart through the new context by which we understand or see it. I have argued, for example, that unexpected visual encounters with novel sights serve to make the familiar seem unfamiliar or the natural seem strange and, thus, to alter our understanding of the world (Garland-Thomson 2009). When we see something that is unexpected or unusual, it becomes denaturalised or strange to us. For more on the critical history of defamiliarisation, see Shklovsky (1917), Stacy (1977), and Thomson-Jones (2009).
- 10.
- 11.
A 2007 article published in the Bulletin of the WHO names India, Pakistan, and China among the countries with high number of organ exports, while wealthier countries like the United States, Canada, Australia, and Japan—among others—import the most organs for transplantation (Shimazono 2007, np).
- 12.
My purpose here is not to dispute these assumptions about disabled people with evidence but rather to suggest that questioning them by presenting a world where they no longer apply is progressive cultural work. Nonetheless, sociologists and bioethicists, among others, have amply shown that these understandings of disabled lives and people with disabilities are reductive and inaccurate.
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Garland-Thomson, R. (2019). World Building, Citizenship, and Disability: The Strange World of Kazuo Ishiguro’s Never Let Me Go. In: Watermeyer, B., McKenzie, J., Swartz, L. (eds) The Palgrave Handbook of Disability and Citizenship in the Global South. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-74675-3_3
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