The Case for Conserving Disability

Garland-Thomson, Rosemarie. “The Case for Conserving Disability.” Bioethical Inquiry 9, no. 3 (2012): 339-355.

The historical and ideological trope (described by David Mitchell and Sharon Snyder) that disability disqualifies people from participation in society is a commonly held view of disability in our society. According to disability studies scholar and bioethicist Rosemarie Garland-Thomson, this understanding of disability is rooted in eugenic logic, which “tells us that our world would be a better place without disability” and promotes efforts for its elimination (pp. 340-341). In this article, Garland-Thomson explores “the bioethical question of why we might want to conserve rather than eliminate disability from the human condition” (p. 341). She argues that rather than repeat claims that conceptualize disability as disqualification, where it is only associated with “pain, disease, suffering, functional limitation, abnormality, dependence, social stigma, and economic disadvantage,” disability should be reconsidered in terms of the benefit it bestows on society and therefore should be conserved: preserved intact, kept alive, and encouraged to flourish. She employs the language of environmental conservation intentionally to suggest that rather than being a restrictive liability, disability is a generative and beneficial resource that brings diversity to the human experience. Considering “the cultural and material contribution disability offers the world,” Garland-Thomson calls on disability to be celebrated and valued as a good in itself rather than just protected for its presumed fragility and vulnerability (p. 341). Employing counter-eugenic logic, she argues that disability provides humankind with invaluable resources in three interrelated areas: narrative, epistemology, and ethics.

What is Disability?

It’s first important to understand how Garland-Thomson goes about defining disability. She provides both a political and cultural definition of the term. For a political definition, she turns to the Americans with Disabilities Act of 1990 and the United Nations Convention of Rights of People with Disabilities of 2009 to highlight how each is dependent on a medical model of disability. For her preferred cultural definition of disability, she draws on phenomenology and constructivist understandings of disability in terms of “identity, materiality, and being” (p. 342) and argues that “what we think of as disability begins in bodily variation and the inherent dynamism of the flesh” (p. 342). In other words, disability can be understood in how the body is continuously transformed in its interactions with the environment over time. Because “we are fragile, limited, and pliable in the face of life itself,” Garland-Thomson argues that we “evolve into disability.” As a result, “disability is perhaps the essential characteristic of being human” (p. 342).

Disability as a Resource

People with disabilities enrich the world, not necessarily or only through economic contributions, but simply through their presence. This is what she calls her “because-of-rather-than-in-spite-of counter-eugenic position” (p. 343). Garland-Thomson argues that “as both a generative concept and a fundamental human experience,” disability has the potential to make meaning through three interrelated ways: life narratives, knowledge production, and ethical insight.

Disability as a Narrative Resource

Disability can help convey human stories. In discussing disability as a narrative resource, Garland-Thomson refers to Leslie Fiedler’s 1978 book, Freaks: Myths and Images of the Secret Self, and Arthur W. Frank’s 1995 book, The Wounded Storyteller: Body, Illness and Ethics. She argues that disability narratives contribute to “the cultural work of teaching the nondisabled to be more human” (p. 344). Fielder seeks to preserve “extravagant disability in the world” through disability-as-freakdom that raises consciousness in the nondisabled that enables them to become more human through self-awareness. “For Fielder,” she writes, “people with extravagantly manifest disabilities should inhabit the world to provide theatrical, edifying encounters between ordinary folk dulled by the ordinary, needing an abrupt consciousness-raising exercise to be awakened to their own internal monster” (p. 344). For Frank, disability is a narrative resource in the form of self-story. Frank sees disability as a resource for disabled people and asserts that first-person narrative has a restorative power because it enriches self-understanding and identity formation for people who have been thrust into a sick role. “Crucial to both Fiedler’s and Frank’s accounts of disability as a narrative resource,” she argues, is the idea of “suffering as ennobling” (p. 345).

Disability as Epistemic Resource

 Because of being disabled, not in spite of it, the disabled have unique experiences in this world compared to the nondisabled population, and therefore the disability and the experience of being disabled are a resource for novel insights and knowledge that only be gained because of the disability. Garland-Thomson references the 2008 book, Disability Bioethics: Moral Bodies, Moral Difference by Jackie Leach Scully to describe the ways that disabled bodies create “ways of knowing shaped by embodiment that are distinctive from the ways of knowing that a nondisabled body develops as it interacts with a world built to accommodate it” (p. 346). Garland-Thomson provides the example of deaf-blind activist and writer, Helen Keller, who generated “alternative or minority ways of knowing” (p. 346) when her other senses were heightened. The result was a novel way of experiencing the world not available to the nondisabled.

Disability as Ethical Resource

 In her discussion of disability as an ethical resource, Garland-Thomson refers to Michael J. Sandel’s 2007 book, The Case Against Perfection: Ethics in the Age of Genetic Engineering. Sandel describes disabilities, particularly children born with disabilities, as unique ethical opportunities that allow us to “appreciate children as gifts” and to accept them “as they come” without controlling intervention or desire to interfere in some way with their inherent humanness (p. 347). Sandel vies the modern impulse to control or restrict as reflecting our hubris and narcissism and believes the cultural work of disability is to defeat this self-aggrandizement and getting back to “an appreciation of the gifted character” of humans as they exist. His rationale for conserving disability is similar to Fiedler’s in suggesting that the disabled can help make the nondisabled into better people by teaching them about what it means to be human.

Counter-Eugenic Logic and the Problem of Suffering

 It is well-established that nondisabled people have a much harsher view of what suffering entails for those with disabilities than the people who actually live with disability. The prevention of suffering is one of the most popular eugenic arguments for eliminating disability (and disabled people), but concepts of who actually suffers and how much are widely misunderstood by nondisabled individuals. Many other groups including bioethicists, supporters of physician-assisted suicide, and the reproductive rights movement have used this logic of preventing suffering for making their case in eliminating disability. Often times, empathy underscores these concerns, but the problem with empathy is that it “depends upon the experiences and imagination of the empathizer in regarding another person, prejudices, limited understandings, and narrow expectations can lead one person to project oversimplified or inaccurate assessments of life quality or suffering onto another person” (p. 350). At the extreme, this can lead to “mercy killings,” and it often results in an underestimation about the quality of life of those with disabilities. Through the heartbreaking story of Emily Rupp’s experience of parenting a child with Tay-Sachs disease, Garland-Thomson demonstrates how “suffering expands our imagination about what we can endure” (p. 350). Another benefit of disability that Garland-Thomson gains from Rupp’s experience is that disability has the power to compel us to forget about the future and live in the present tense. Disability therefore flies in the face of modernity, which relies on “a temporal aspiration” (p. 352) due to its unpredictable and uncontrollable nature. Disability then, according to Garland-Thomson, is “a conceptual category that represents something going beyond actual people with disabilities” (p. 352). According to Garland-Thomson, “disability and illness frustrate modernity’s investment in controlling the future” (p. 352).

My Concerns/Questions

What about disabled people who are unwilling to endure the downsides of disability that a movement towards conservation would bring?

In The Wounded Storyteller, Arthur Frank writes about illness self-narratives and not disability specifically. He also describes self-narrative as a way of gaining control over contingency and talks a lot of about crossing a divide between sickness and health and of remission society where “the foreground and background of sickness and health constantly shade into each other.”[ref]Frank, Arthur W. The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press, 2013: 9.[/ref] Are there any complications here with regards to Garland-Thomson’s use of Frank as an example?