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.
(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