Following up on a previous post, here’s highlights from “the case for conserving disability” by Rosemarie Garland-Thomson. I hope the quoted selections below suggest the ability to completely change your perspective on disability that Garland-Thomson’s article did when I read it.
“Eugenic logic tells us that our world would be a better place if disability could be eliminated.” “Eugenic logic … is simply common sense to most people and is supported by the logic of modernity itself.” This is reflected in the infamous phrasing of Justice Oliver Wendell Holmes, Jr. in upholding compulsory sterilization of the “feeble-minded,”
It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.
“We understand disability to confer pain, disease, suffering, functional limitation, abnormality, dependence, social stigma, and economic disadvantage and to limit life opportunities and quality.” Garland-Thomson challenges this conventional wisdom about disability by making the case for conserving disability.
To counter the eugenic logic, she presents “a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider is the cultural and material contributions disability offers to the world.”
Garland-Thomson makes a point that I began to understand since my daughter’s birth: we are all disabled in one way or another, and will “evolve into disability. Our bodies need care; we need assistance to live; we are fragile, limited and pliable in the face of life itself. Disability is thus inherent in our being. What we call disability is perhaps the essential characteristic of being human.”
Disability as a narrative resource
Disability helps to tell the human story. Garland-Thomson cites Leslie Fiedler’s 1978 book, Freaks: Myths and Images of the Secret Self. “Equating Nazi eugenics with contemporary reproductive technology that selects for elimination the so-called most severe disability,” Fiedler instead argues that “the spectacularly disabled among us contribute the cultural work of teaching the nondisabled how to be more human.” Indeed, isn’t that one of the main insights every character makes in every film ever made that centers on a character with disabilities: that the disabled person teaches the nondisabled how to care for one another better?
Disability as an epistemic resource
Because of being disabled, not in spite of it, the disabled have unique experiences in this world as compared to the typical population, from which insights and knowledge can only be gained because of the disability. Garland-Thomson cites as an example Helen Keller who generated “alternative or minority ways of knowing.” Being deaf and blind, Keller’s other senses were heightened through her having to rely upon them, resulting in her experiencing the world in a novel way. Specific to Down syndrome, this notion of disability as providing a unique source of knowledge is reflected in the statement by Roger Reeves on a possible cure for cancer in all people, discovered because of the overexpression of genes on the 21st Chromosome:
If there were no such thing as Down syndrome, we probably wouldn’t have found this because it wouldn’t make a lot of sense to take these oncogenes that we thought were genes that cause cancer and try to express them at high levels to try to prevent cancer. But that’s what happens
Disability as ethical resource
This final section of Garland-Thomson’s case is what really blew my hair back (or would have if I had any).
She cites heavily the arguments made by Michael J. Sandel in his book The Case Against Perfection: Ethics in the Age of Genetic Engineering. “Sandel argues that disability, specifically children born with disabilities, offers us the ethical opportunity, fundamental to the human condition to accept and make a life what he calls ‘giftedness.'” “To accept children as gifts is to accept them as they come, not as objects of our design or products of our will or instruments of our ambition. “Sandel argues for preserving disability and disabled people, in particular the opportunity to parent disabled children, rather than eliminate them through selective abortion and genetic manipulation.”
“[Sandel] puts eugenics and genetic engineering in the same category and objects morally to eugenics as the ‘triumph of willfulness over giftedness, of dominion over reverence, of molding over beholding.” Citing Eva Kittay, Garland-Thomson notes that Sandel’s argument is consistent with Kittay’s point that “our modern ethic of autonomy and the denigration of dependence and interdependence diminishes the humanness of us all.”
“In Sandel’s view, the cultural work of disability is to defeat our hubris.”
The problem of suffering
The ready critique of the case of conserving disability is that Garland-Thomson, Sandel, and others must be arguing in favor of suffering, since to conserve disability means to conserve human suffering. Garland-Thomson makes counter-counter-arguments against this claim that she is wanting to perpetuate human suffering.
First, it is well-established that the non-disabled have a much harsher view of a life with disability than those actually living with the disability. “The problem with empathy … is that it may lead to a ‘preoccupation with self that obscures the other,” i.e. that whose suffering that is actually being alleviated is the typical person, not the person who has the disability. “The disabled 20th-century American author Flannery O’Connor cautions against the peril … that empathy, what she calls ‘tenderness,’ for the suffering of others can lead to the gas chamber.” Oh, we’re just sparing those poor souls a life not worth living; we’re alleviating suffering. But, again, whose suffering? The disabled or the non-disabled viewing the disabled?
This point is demonstrated by Garland-Thomson’s reference to a wonderful on-line piece written by Chris Gabbard about his profoundly disabled son August (who recently passed away). “Gabbard observes that many ‘well-meaning people would like to put an end to August’s suffering, but they do not stop to consider whether he actually is suffering.” Gabbard admits caring for his son likely limited his professional career, but it expanded his understanding and experience of the world. “Ultimately, August’s gift to Gabbard … is what any human relationship provides to any of us: the ‘opportunity to profoundly love another human being.'”
Garland-Thomson’s article is extensive, intricate, and I do not do it justice with my piecemeal quotes. If you can get a copy of it, and this post has piqued your interest, then I encourage you to read it for yourself. And, if like me, I expect you’ll then make plans to read several of the sources she cites (Sandel is on my reading list).
She concludes by noting that “Eugenics is about controlling the future. It is the ideology and practice of controlling who reproduces, how they reproduce, and what they reproduce in the interest of controlling the composition of a particular citizenry.” On the other hand, “Disability and illness frustrate modernity’s investment in controlling the future.” “The persistence of disability in the human condition frustrates modernity’s fantasy that we determine the arc of our own histories.” “So, disability’s contribution, its work, is to sever the present from the future.”
For me, it’s enough to make the case for conserving disability if it means we will avoid repeating the atrocities of our eugenics past.
What do you think? Is there a case for conserving disability?