Of Confirmation Bias and Disability

Confirmation bias is of course universal. The self, whatever it means, assembles a mosaic of preconceived views. Some are descended from the cradle; some from bad teachers. No matter what we say about it CB depends on a lack of comic irony, the inability to probe the limits of one’s customary ideas. I’ve several bad thoughts and they them come from unhappy engagements with a legion of hard hearted able bodied authority figures. Throughout my life from Kindergarten to today I’ve been told my disability is a problem.

So in a spirit of admission, my biggest confirmation bias is that I tend to think most if not all able bodied people are ableists and since I’ve been hurt over and over I anticipate the hurt. This means the open hand of my soul is often empty.

It gets worse. My disability bias absolves me of digging deep both inside myself and “out there” among strangers. I am hereby admitting I can be lazy.

Don’t get me wrong. I’ve had it with rank and file discrimination against the disabled and I’ll go to my grave decrying it. This isn’t an essay about going soft. This is about the difference between essentialism and soulful ambivalence.

Confirmation bias assures that I’ll go on thinking all white men are racists; all heavy set people are comedians; all able bodied people hate me.

Cultural theorists say, often with muscularity, that confirmation bias is sagacious.

But my grief and yours coincide.

I cannot grow without confronting my pain.

People are scared of disability. They believe without examination in compulsory normativity.

Most people despise their own liberty.

The central tenet of fascism is that all people outside “the party” are miscreants.

Freedom is, in all its beauty, a pursuit which means pain.

I will not participate in minimizing my pain or yours. Not will I adopt a cheap script.

Able-splaining 101

If you’re disabled you know all about it. The apparently “normal” person who tells you what you need to know is legion. BTW this figure can be anyone. Despite feminism, women can be able-splainers just as often as men. I recall distinctly the associate provost at my university who told me that a software package was “robust” when it comes to accessibility when in fact it was junk. Able-splainers have no shame. All they need is a cocksure belief that the disabled are deficient which means of course we’re dismissible and voila!

But did you know that silence is also a form of able-splaining? When the disabled say something is unusable silence is often the best able-splaining of all. And so economical!
Nothing says “that’s the way it is little dude” better than a good old fashioned round of silence.

The other day I got able-splained in a new way which trust me is a remarkable thing as I’ve pretty much heard or not heard it all. An elderly professor accused me of being antisocial because he saw me scoop my guide dog’s waste into a plastic bag and then gently place the bag in a snow drift.

I was carrying a harness, a briefcase, holding a leash, and having a conversation with another faculty member all at the same time.

And there I was. Busted. Imperfect. A hater of humanity.

What he was really saying was I don’t belong on his campus.

You know, us cripples with our animals, breathing tubes, mechanical devices galore, our irregular invisible needs—how polluting we are.

Ableism likes the world clean.

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

Greeks, Spears, and Disability in Higher Ed

When Greeks (ancient) went to the theater they knew they were going to see a tragedy. Though comedy was sometimes performed it was rare. One can imagine a good old Greek saying, “I must get my fair share of abuse.”

To be abused was a matter of citizenship. With nuance and scruple one was reminded what being a good Greek (or a bad one) was all about.

In its pantheistic way the Hellenic world was engaged with suffering.

Disabled I’m eternally catching spears thrown by the able bodied. These spears have writing on them. On the arrow head it says, “I’m not like you.” On the shaft: “As God is my witness.” And if the spear has a ribbon it says: “Make them go away.”

Usually I catch the spears but sometimes they pierce me.

Because I remember the Greeks I know there’s no such thing as “me.”

I’m just one of the insistent ones at my university who says the materials distributed by the committee aren’t accessible; the websites and software packages used by the university are not accessible; the provision of equal opportunity for disabled students and staff is not readily apparent.

I catch spears for a living.

The difference between today’s disabled and any ancient Greek is we’re not afflicted by staid and superstitious ideas of fate.

We weren’t misshapen because of the gods.
We aren’t incapable of reason.
We don’t stand for anything other than embodied diversity.
Bodies don’t stand for anything other than the rich tableaux of human kind.
We do not represent the decline of society.
We don’t suggest the erosion of academic competence by our very presence.

Why is this so hard to absorb in higher education?

Jay Dolmage, author of several important books on disability and how we talk about it tells us that colleges and universities have always been built on the exclusion of certain kinds of bodies. In fact the university has functioned throughout history as an exclusionary gate to society. Dolmage writes:

“Disability has always been constructed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of “lower education” to justify its work and to ground its exceptionalism, and the physical gates and steps trace a long history of exclusion.”

Excerpt From: Jay Dolmage. “Academic Ableism: Disability and Higher Education.” Apple Books.

Creating versions of lower education and lowered expectations is in no small measure what universities have been about. Eugenics, the organized pseudo-science of social Darwinism had a strong foothold in American universities including Stanford, Harvard, and yes, Syracuse. Faculty at Syracuse engaged in a study with the infamous Cold Spring Harbor eugenics institute, a study which sought to prove Syracuse University coeds were deficient as bearers of offspring.

Exclusion and deficiency have long been manufactured by post-secondary education. Small wonder then that almost thirty years after the adoption of the ADA colleges and universities are so far behind when it comes to supporting and celebrating disability inclusion and disability rights.

Jay Dolmage again:

“…the alternative to planning for diversity is pretty dire, leaving access as an afterthought, situating it as something nice to be done out of a spirit of charity, or as something people with disabilities are being unfairly given. Without Universal Design, the alternatives are the “steep steps” that are set out in front of many people with disabilities, or the “retrofits” that might remove barriers or provide access for disabled people, but do so in ways that physically and ideologically locate disability as either deserving exclusion or as an afterthought.”

Excerpt From: Jay Dolmage. “Academic Ableism: Disability and Higher Education.” Apple Books.

The Greeks understood dire.

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

Cranky

I must admit I’m a cranky man. This means I’m a hurdy gurdy man, a street nuisance. Did you know most curbside organ players were disabled? Many were war veterans. Jobless. They played for your amusement. Several cities in America didn’t like them. “Ugly Laws” were adopted across the nation at the turn of the last century—edicts stipulating bothersome, unsightly people were forbidden to appear in public. This was excellent news for the asylum business. The United States loves to lock people up for any reason at all—you’re black and deaf. Asylum. You’re blind. Asylum. You’re an immigrant in Trump’s America. Instant prison camp. Native American. Home detention. Gay? The Asylum. The Los Angeles County Jail is the largest psychiatric facility in the U.S. Cranky? You bet. I’m so cranky I can’t muster irony.

Disabled I know a good deal about cruel irony—“the act of using somebody’s words against them, usually when something to their great detriment is about to be inflicted upon them.”

I’ll never forget an administrator of a certain college who, once he had me behind a closed door told me I wasn’t a competitive blind person, why he had a roommate at university who was a blind Olympic rower and so forth. He was essentially firing me because I’d asked for a reasonable accommodation.

But you see here’s the trap. I’m cranky if I talk back, assert my dignity and my rights. I am especially cranky at the University where when I ask for basic ADA 101 accommodations, (a sighted graduate assistant to help me in my daily work) accessible texts, descriptions of overhead projections, asking that our websites and teaching software be accessible and so forth) I’m labeled as a real cranky pants. Academic ableism is built on cruel irony. “If you were more like us you wouldn’t have a problem. You don’t like what’s happening to you? You must be the problem. Not us. Not us able bodied birdies….”

I’ve met so many able bodied birdies. They may have different kinds of feathers but their song is always the same.

Ableism, the experience of it, requires the French adjective écœurante —for disability discrimination is simultaneously heartless and sickening. I recall the professor of English at the University of Iowa who told me my blindness would preclude me from being in his “famous” graduate class on Charles Olson. Another professor snickered when I said I was reading books on tape. When I protested the chairman of the English department told said I was a whiner and complainer. I wept alone in the Men’s room. My path forward to a Ph.D. in English at the University of Iowa was stymied. This was a full six years before the ADA was signed into law. Who was I to imagine a place at the agora’s marble stump?

Now I had an MFA degree from the creative writing program at that same university and I just went ahead and wrote books and sometimes appeared on radio and television and I wrote for big magazines and over time I received tenure at The Ohio State University. Later I went back to teach at Iowa despite my earlier experience and these days I’m at Syracuse. I’m a survivor of sorts. I’m a blind professor. The odds were never in my favor. Somewhere along the way I began thinking of Moliere in my private moments and I laughed because after all, every human occasion is comical and Moliere recognized the comedic types one encounters in closed societies better than anyone before or since.

It doesn’t really matter what institution of higher education you’re at, if you’re disabled you’ll meet the following Moliere-esque figures. The heartless and sickening ye will always have with ye if you trek onto a college campus. You’re more likely to spot them first if you hail from a historically marginalized background however, the ecoeurantists are more prone to blab at you if you’re disabled, especially behind closed doors. Ableists love closed doors. All bigots love closed doors.

The “Tartuffe” is an administrator, usually a dean or provost who will tell you with affected gestures that he, she, they, what have you, cares a great deal about disability and then, despite the fact a disabled person has outlined a genuine problem, never helps out.

The “Harpagon” is also an administrator, but he, she, they, can also be a faculty member. The Harpagon is driven by rhetorics of cheapness. It will cost too much to retrofit this bathroom, classroom, syllabus, website, etc. If the Harpagon is a professor he, she, they, generally drives a nice car.

Statue du Commandeur: a rigid, punctilious, puritanical college president—“this is the way we’ve always done it. If we changed things for you, we’d have to change things for everybody. Yes, it certainly must be hard…” See:

The Geronte: when his son is kidnapped he says: “Que diable allait-il faire dans cette galère?” (What in the deuce did he want to go on that galley for?” In other words, he brought this upon himself. “Really, shouldn’t you try something easier? I could have told you.”

These are the principle types of ableists. I invite you to add your own.

The one thing they have in common besides a privileged and thoroughly unexamined attachment to the idea that education is a race requiring stamina and deprivation, is that they all genuinely believe that accommodations are a kind of vanity.

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

Of Ableism and the Lucky Rabbit’s Foot

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?

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

Alone in Boston, Guide Dog Notwithstanding

I’m alone with my guide dog Caitlyn in the back bay of Boston. Tonight we’ll take in a ball game at Fenway Park, home of the Red Sox. Dog and man going solo to a stadium. Sometimes in this blind life I worry in advance: how will it go? Will everything be OK? Will I find my seat? Will I find my way back to my seat after searching for a hot dog? Will strangers be helpful? Will I experience kindness? Then in occurs to me, these questions are ordinary—everyone has them, blindness or not. Will this day receive me? How will it go?

There’s a song by the late great Lou Reed that I like which has the refrain “it takes a bus load of faith to get by…” I’ve always liked Lou’s employment of “faith” which he offers with a hint of irony to be sure. A bus load of faith is a crowd’s worth of faith—we will get where we need to go without mishap. And we’ll manage it because we all had the proper thoughts. We kept that bus on the road with our individual and collective magic. Faith is hard work.

I think this is why I like to just take off and go places by myself. Or with just my dog for company, I feel the skin of my faith grow tighter. I step out into the unfamiliar. I’m alert to the mysteries of being alive and the sheer improbability of having a consciousness. I walk down Boyleston Street and feel how provisionally alive I am and how lucky. And I don’t know precisely where I’m going.

I’ve been teaching this week at a wonderful low residency creative writing MFA program called “Solstice” located at Pine Manor College in Chestnut Hills. As a nonfiction writer I’m often talking about the essay—how creative prose can help us shape experience, make sense of the blooming buzz as they say. One may think of the essay as a soothing corral for the mind. Here is a shape in language within which we can rest, survey, feel a bit less panicked by the wideness of perception. Sometimes a horse, upon entering the corral is instantly calm.

And then there’s the horse who gallops into the shadows and sun beams with no idea where she or he is going.

I think that’s me just now. Enter the day. Get a little lost. Feel again the ache of amazement, that transverse cross of body and mind.

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

The Ableist Shrug at Licorice University

Ableism: I’m the problem. I didn’t get cured. Didn’t stand up. Couldn’t read the books with my peepers. “Jeepers Creepers, where’d you get those peepers?” 

Good eyes are productive, produce results; bad eyes, get cured baby! 

Ableism: a term no one likes. Like licorice. (No one really likes licorice. Studies have shown this to be true.) 

What if I substitute “licorice” for ableism? Would it be easier to talk about? 

Licorice: a set of beliefs that hold everyone must like licorice. All licorice eaters are equal but some are more equal than others. If you don’t favor Glycyrrhiza glabra you can’t sit at the table. The great big licorice table. 

Note: too much licorice will poison animals and humans. But that doesn’t mean there aren’t whole cities of licorice. 

Side note; when I was a boy in Finland, licorice candies were sold in bite sized pieces, wrapped in wax paper featuring a cartoon of a little black child. 

Licorice is not innocence. 

Ableism: a predominant belief that discrimination against the disabled is just a matter of innocence. E.g. “We really care about disabled people. What’s that? You can’t get basic accommodations? Oh dear. That MUST be awful! I’m sorry you feel that way!”

Ableism: the disabled have ungoverned feelings. That’s their problem. Really. It is their problem not ours. 

I call the example just above “the ableist shrug”—universities are especially good at this. 

Back to licorice: “So Billy, you don’t like licorice? Then you can’t be in our club house!”

Ableism is infantile. 

The shrug is privilege. It’s not convenient to think about those people today. Perhaps we will get to them tomorrow. 

I’m sorry you feel that way.

Candy can represent hegemony. Finnish candy. 

The shrug: we are good people. We care about you. But your accommodation is way down on our list of priorities, because, well, how do I say this? You’re not in our budget. Not in our plans, not convenient, yes, that’s it! You’re really really really not convenient. We love convenience here at Licorice University. We may talk big about being the best! Frankly, business as usual is just fine. We especially like the Licorice Clubhouse. 

Shrug:  the word comes from Late Middle English and it originally meant “to fidget”—and fidget is an early Modern English word meaning “uneasy”—the shrug, the licorice ableist shrug signifies that disability makes the ableist both uneasy and vexed. Having to think about disability is nettlesome. 

When the disabled bring up their problems—lack of access to buildings, bathrooms, educational materials, transportation, zero dignity in the village square, the shrug works this way: 

  • We personalize the problem. 
  • It’s the disabled person’s difficulty not ours.
  • All disabled people are just failed medical patients. 
  • If you can’t be cured, you’re a failure as a human being.
  • While the disabled are talking, we look at our iPhones.
  • We all know there’s something wrong with the disabled, it’s below the surface, like icebergs.
  • You can’t see it, but below the waterline they’ve got bad attitudes. 
  • If the disabled just had better attitudes. 
  • When the disabled say, “we really hate it here” you say: “I’m sorry you feel that way.”
  • Which means the problems are not about accessibility and inclusion but all about the individualized disabled person.

If you were the right kind of disabled, (Tiny Tim for example) you’d be grateful for the little we’ve given you. “I know it’s a dinky crutch, hand made by your impoverished father, but it’s yours Tiny. It’s yours!”

 

 

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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