Abstract
It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world.
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Notes
The very term eugenics is a controversial and complicated word that I use here intentionally. The history of eugenics as a way of thinking and a set of historically specific practices and policies has been well laid out by authors such as Daniel Kevles (1985), Henry Friedlander (1995), Edwin Black (2003), Harry Bruinius (2007), and others. Bioethicists have made important distinctions among eugenic practices and policies that work toward explicating the complexity of eugenic logic. Thus, we have positive, negative, liberal, and authoritarian, each of which is manifest in overlapping but also differing solutions with different levels of ethical acceptability. For my purposes, I present the concept of eugenic logic, carried out in widely differing practices and policies, which aims fundamentally to eliminate the human traits and ways of being in the world that we probably understand as disability. What I wish to bring forward here is not what kinds of eugenic logic are acceptable or unacceptable but rather counter-eugenic logic, a way of thinking that does not rely on the assumption that disability should be eliminated.
Recent work in feminist science studies and elsewhere has addressed the complexity between what has been redundantly understood as the nature/nurture opposition, or the relationship between genetics and environment. See, for example, Anne Fausto-Sterling, Sexing the Body (2000); Karen Barad, Meeting the Universe Halfway (2007); and Jackie Leach Scully, Disability Bioethics (2008).
See, for example, Joseph Shapiro, No Pity (1993); Richard Scotch, From Good Will to Civil Rights (1984), and the United Nations Convention on the Rights of People with Disabilities, available online at http://www.un.org/disabilities/convention/conventionfull.shtml.
See, for example, Allen Buchanan, From Chance to Choice: Genetics and Justice (2000); Nicholas Agar, Liberal Eugenics (2004); Nikolas Rose, The Politics of Life Itself (2007); Jürgen Habermas, The Future of Human Nature (2003); John Robertson, Children of Choice: Freedom and New Reproductive Technologies (1994); Philip Kitcher, The Lives to Come: The Genetic Revolution in Human Possibilities (1996); Carl Elliott, Better Than Well (2003); and Erik Parens (1998, 2005, 2006). In addition, Mara Hvistendahl’s Unnatural Selection: Choosing Boys Over Girls, and the Consequences of a World Full of Men (2011) takes up the recent complex and disturbing issue of what might be called a combination of liberal eugenics and negative eugenics involving the population imbalance in some areas of the world created by sex selection abortion.
Human rights activist and author Terry Tracy makes a distinction between illness and disability narratives in an unpublished paper delivered at Columbia University in March 2012.
Linda Martin Alcoff’s 2005 account of identity formation, Visible Identities, corresponds with Frank’s understanding of disability as a generative resource for self-story. Alcoff’s concern is the “perceptual habit” of visual exchange that produces identity formation, especially in the context of gender and racial legibility. Whereas Frank’s stories of wounding are textual and linguistic, Alcoff’s version of narrative identity begins in visual perception and material propinquity leading to self-story that finds its reference in the received identity categories generated by systems of race and gender—and I would add the ability system. Identity, for Alcoff, does not reside in visible features but emerges from shared, dominant interpretations of “visual markers on the body,” markers of belonging that operate similarly to the “wounds” Arthur Frank’s narratives explicate (Alcoff 2005, 6).
An extensive research literature exists in the field of psychology on embodied cognition; for an accessible summary of this concept, see “When Truisms Are True” by Suntae Kim, Evan Polman, and Jeffrey Sanchez-Burks, published in The New York Times (February 25, 2012). The philosophical tradition of phenomenology posits a humanistic equivalent of the social scientific concept of embodied cognition.
In accordance with Scully (2008) and following Patricia Hill Collins (2000) and others, I have suggested elsewhere that the material experience of navigating a world built for the majority while living with a minority form of embodiment such as disability can produce a politicized consciousness, or an epistemic epiphany regarding the relativity of exclusions that the status quo explains as natural or essentializes as inherent inferiority. For a further explication of this argument, see my recent essay in Hypatia (Garland-Thomson 2011).
The subjugated knowledge that comes from disability might be understood as an asset rather than a liability, not just in terms of diversity or human rights categories, but as what might be called an advantageous minority skill set. For example, South African double amputee runner Oscar Pistorius, who races on fiber carbon legs, challenged the Olympic Committee to allow him to compete in the Olympics rather than the Paralympics. The Olympic Committee initially refused Pistorius on the basis that his prosthetic legs gave him an advantage over runners with fleshly legs, although this decision was overturned. The idea that metal rather than fleshly legs might be an advantage in sports, and perhaps by extension life, questions our dominant cultural assumptions about both fitness and quality of life.
Disability can develop advantageous expertise as one navigates barriers and unsupportive material and attitudinal environments. For example, managing disability can sharpen strategic planning and time management skills, as a recent New York Times article pointed out (Klaus 2012). The opportunity to learn to live effectively in an environment built for someone else’s body can be generative rather than a catastrophe for human beings. For example, the architect Chris Downey developed an effective form of tactile drawing after becoming blind by substituting a standard pencil with a kind of Play-Doh spaghetti that added another sense to his design creativity. Navigational skills that blind and low-vision people use can benefit the sighted majority when visual navigation fails. Such minority body consciousness can foster a resourcefulness that also extends to the nondisabled and not yet disabled as they relate to and live with people with disabilities. The blind writer, Georgina Kleege, for instance points out the irony of the airline policy that instructs disabled passengers to remain in their seats in the case of a disaster and wait for help. “It’s the blind passenger who can in an instant,” notes Kleege, “pull a folding cane from her pocket who will lead everyone else out of a darkened and smoke-filled fuselage” (Kleege, personal communication). Acquiring or being born with the traits we call disabilities fosters an adaptability and resourcefulness that often is underdeveloped in those whose bodies conform smoothly into the prevailing, sustaining environment. People born without arms, for example, all learn to use their toes to accomplish tasks that those of us with arms are not able to do and often cannot imagine. Deaf people develop modes of communication that are silent, reach across long distances, and are particularly effective in babies whose capacity to speak is undeveloped. Disability can provoke intellectual development as well. The philosopher Jürgen Habermas (2008) has said that the experience of having a cleft palate from birth and the accompanying multiple surgeries and social exclusions he experienced positively shaped his intellectual trajectory by making it clear to him the importance of participation in the public sphere.
A related argument has been put forward stridently by Deaf activists contending that cochlear implants for Deaf people are eugenic.
Although Sandel does not discuss gender distinctions in his understanding of hubris, a vibrant conversation in feminist ethics and theology suggests that the kind of hubris Sandel discusses has historically been the province of men and masculinity, where women historically have been excluded from the benefits and liabilities of hubris. See, for example, Christ and Plaskow (1979), particularly Valerie Saiving’s (1979) essay on gender and sin in that volume, and a whole range of feminist scholarship on the ethic of care, including: Gilligan (1982), Kittay and Meyers (1987), Beauchamp and Childress (1994), Held (2006), and Nussbaum (2006), among others.
Christina Cogdell (2004) argues that streamlined modern design is inherently eugenic; its stripping of ornamentation and understanding of ornamentation as a drag on efficiency and an impediment to effective function (form follows function) represents a eugenic commitment to evolutionary progress.
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Garland-Thomson, R. The Case for Conserving Disability. Bioethical Inquiry 9, 339–355 (2012). https://doi.org/10.1007/s11673-012-9380-0
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DOI: https://doi.org/10.1007/s11673-012-9380-0