Bioethics – Planet of the Blind

Life proceeds without plot no matter you went to a good school or studied well—a matter which Americans have difficulty absorbing. This is why people in the United States don’t generally believe in luck.

I’ll venture in some circumstances I’m fortunate. I married well; I’ve more than a few scrupulous friends; I’ve a job. The job is no small thing given the unemployment statistics with regard to disability.

Still I will say I’ve been lucky. I did not make my own luck. This I do not believe. This I do not believe it at all. As Christopher Hitchens once put it: “It’s one thing to be lucky: it’s another thing to admit that luck has been yours.” This is the other thing.

You may have talent. Perhaps you imagine it was your inheritance. Your skill with musical composition comes down from your great great grandmother. It’s all a matter of epigenetics. You imagine this DNA bequest isn’t luck until things go badly and when they go very badly you curse your ancestors. As a general rule Americans only curse their ancestors when they become ill. The greatest American irony of all—each unassuming citizen believes he or she is secretly bred monarchial, a thing Huck Finn encounters when he meets the Duke and Dauphin.

So health isn’t a matter of luck; fortune less so; skill of any kind is scientifically deterministic. Karl Marx never had a chance in the USA as Americans hold that capital is not acquired on the backs of the less fortunate. Fortune was always yours even when it wasn’t apparent and admissions of luck take the hind most.

I am on about this, I admit, because I’ve had it with academics and/or artists who can’t admire the sheer improbability of their success and thereby think the disabled are not only malformed but should be seen as figures deserving (or not deserving) charity.

Ableism is the consequence of a broad misunderstanding or disavowal of luck which is why it’s dangerous for all, not just the disabled. It’s not a far jump from “I earned my money by the sweat of my brow” to “I absolutely deserve to have a designer baby and a designer death.” To dwell on luck is to admit life proceeds without plot as we’ve already noted which is a terrifying idea. Life is life and not what we may wish it though wishes can be admirable and striving is noble.

Now I’ve said I’m lucky. Forty years ago a teacher saw my talent for writing. Professor X encouraged me. I wrote. More professors encouraged me. I wrote some more. Kept at it. Was blind and scarcely employable but writing I could do. People who were not me or my parents said I had writerly capacities. My professional life has been the product of a village, not a matter of tirelessness or Bohemian ambition.

Ableism imagines the singularity of talent or health—beauty or success is the de facto state of affairs of embodiment. If you’re not in the group you’re not of the elect. This is important: not of the elect means the wrongness of you is ordained—either by God or DNA. Ableism imagines that the good body is the proper one; the deformed body is a poor inheritance. Ableism can only admit luck when the healthy say upon seeing the disabled: “there but for the grace of God go I”.

Bioethicists now argue whether disability viewed as a social construction and therefore a component of all humanity “should” or “should not” be so conceived. If disability isn’t exceptional and is part of the “new normal” then the utilitarian prospects for all humankind are diminished—so the argument goes—for we’ll stop trying to cure diseases and poor health will be perfectly OK. The few opposing bioethicists say, “disability ye will always have with ye, isn’t it best to include it in our best thinking?”

But you see, it’s the same luck argument all over again. Who gets to be lucky? How much should we acknowledge it? Isn’t it best to imagine you’ve made it on your own?

ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Last week I wrote the following on this blog about journalist Chris Hedges’ post on Truthdig concerning the decision by paralyzed veteran Tomas Young to end his life–a decision that Hedges doesn’t question and which is being spread across news outlets without interrogation. That a depressed, disillusioned, and paralyzed veteran would chose to end his life seems “right” to liberal commentators because in point of fact they haven’t examined their assumptions about disability and the actual living of disability lives:

“The facts are otherwise as disability activists convincingly demonstrate. Has anyone given Tomas Young some useful books on living as a quad? One wonders if he’s read Nancy Mairs’ incomparable memoir “Waist High in the World” or if he’s encountered the amazing artistic work of Neil Marcus. One also imagines the answer is no. What is clear is that Chris Hedges is using the language of religious sacrifice as an altogether easy analect–that is, he critiques the moral condition of the American people using Young’s condition as metaphor, a thing that is detestable though not unsurprising for many liberals are no more adept with disability culture than they are with nano-flowers. Let’s just say that Hedges’ use of Christian metaphors of sacrifice depends upon hideous sentimentality and the unexamined dialectic of valued bodies vs. devalued bodies, a position that’s essentially neo-Victorian and largely uncivilized.”

I read this morning a new piece by Nick Wing over at the Huffington Post which repackages Hedges’ narrative frame, again without any critical irony. What seems to be emerging is a liberal cheering section for a veteran’s suicide, tricked out in the language of outrage against America’s war in Iraq. Fair enough: I belong to Poets Against War and have been opposed to American military interventions since Viet Nam–but I don’t have to kill myself in a glass box to make my point. Tomas Young is being rooted for–cheered to turn himself into a sacrificial martyr in a Kafka-esque display. Why is this okay? Why are people not lining up to tell Young that a paralyzed but imaginative life is fully worth living?

It can’t be that the spirit of eugenics has reared its head can it? It wouldn’t be the case that the recent state sanctioned euthanizing of blind-deaf twins in Belgium (whose deaths were wholly unnecessary) represents a failure of the western cultural imagination to conceive of disabled lives as noble lives? I phrase the matter in rhetorical terms not because I think I know the answer but because I’m afraid I might know. The giveaway is the fealty of pathos in the posts by Hedges and Wing, who both essentially frame Young’s imminent death as inevitable, which is to say they imagine his terminus as a dark mercy. In turn, they see the flames of his funeral pyre lighting the faces of Cheney and Bush. Instead what’s being illuminated is a crowd of bleacher bums cheering for a man to end it all–a man who would be better off alive, as, in fact he has lots to live for if only he and his posse could imagine it. In the meantime I’m chilled by the ample evidence that people think Young has made the right choice. Shame on Truthdig. Shame on Huffpost.

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