On Being the Only Cripple at the Arts Colony

Over a number of years I’ve had the fortune to be housed and fed at places that are devoted to promoting the arts and one should acknowledge fortune is a neutral word for anything that occurs is a matter of luck for good or ill. I’m not the bite the hand that feeds me type. My work has been assisted greatly by residencies at arts colonies both well known and up and coming places. This past summer I spent four and a half weeks at The MacDowell Colony in Peterborough, New Hampshire, a beautiful and legendary place for artists of all kinds. It was my fourth visit to the colony and I will never say a bad thing about the work of MacDowell or its extraordinary-staff.


But something happened to me while I was housed at MacDowell that’s left me pondering what it means to be a disabled artist. Frankly I felt more and more alone. I was the blind guy with the lovely dog. The important conversations were about diversity and while these dinner dialogues were good, I found whenever I suggested the disabled are intersectional figures where issues of identity and human rights are concerned I was treated as a quaint and colorful tinker who makes quirky shoes.

Now being lonesome at an arts colony is an interesting thing. After all you’re not there to be a gadfly and getting your work done in a quiet and nurturing space is what the whole thing is about. I got work done. I wrote in my woodland cabin. I took thoughtful walks with my dog.

I felt like a curiosity rather than a figure of acceptance. I was the only disabled artist there. I’m often the only disabled person in a whole variety of settings. Why was this summer at MacDowell different?

The casual ableism of the other artists was part of the problem. Blindness and deafness and intellectual disability turned up frequently as pejorative terms in casual conversations. I lost my temper one evening explaining to a young writer that the “r” word isn’t acceptable when talking about people with intellectual disabilities.

What was different is my age. I’m too old for ableist nonsense and too tired to care that I’m the outlier.

But wouldn’t it be nice of the best arts colonies actually had disability months? Frankly I could use dome creative and progressive conversation about embodiment and imagination.

And yes, a few ripping good laughs.

The Planet That Would Have Me

It was Auden broke my heart then put it back together. Caruso followed with a love song from Naples. By the age of 8 I could read poems and listen alone to gramophone records. Blind I’d little street life though I pretended I belonged well enough in open air. Like most people who come from provinces I was happiest in my privacies, my attic with scratchy records and grey books. Though I could scarcely read that’s the world that would have me.

The ugliness of school was both a matter of being bullied for my disability and a curricular austerity. School never let me share what I was learning while alone. As a university professor these past thirty years I think of this. What do the students before me bring to the room? What can provinces teach us?

Provincial culture means the one we must create. Yeats couldn’t be Tennyson and though there were Irish poets before him, he had to be both cognizant of his inner life and the outward world. If he was going to be Irish-provincial he’d have to do it in a dual way. Its a matter of accomplishment that Yeats doesn’t quite fit anywhere. His planet doesn’t exist. Yet its apparent.

Is it a bit silly to invoke Yeats next to a kid with a large print book and a Victrola? I don’t think so. The inner life is Romanticism and strength of mind and each must find it in her or his way. You don’t have to be a poet to need your planet. More and more contemporary fiction and memoirs seek to find planets that will have us. Everyone hails from some version of my childhood attic.

I’m guilty of reductionism here. What I’m after is emergence not life alone with some arias. The planet that will have us is a made place and not granted. What is it made of? Yeats wrote:

By the help of an image
I call to my own opposite, summon all
That I have handled least, least looked upon.

The planet that will have you won’t look like you. Yeats knew and if we’re lucky we also learn it.

Yes when I go walking the world does not resemble my stride, my frame, nor, despite my yearnings for mysticism does the world answer my longings. The world simply is and not what I say of it.

Disability by Any Other Name

I’ve been disabled all my life and I hate the term. Beneath it, like Poe’s tell tale heart, is the pulse of loss. The “d” word is Karl Marx’s term: a 19th century mark for injured workers. It originally meant the lack of utility or earning power owing to a broken body. I prefer to be called a citizen.

That I’m a blind citizen should matter not at all. Did you know that blindness is nothing more than being born left handed? Disability is a false name which pulses underneath us and continues to cause human beings with diverse bodies terrible harm.

Of course there are cutesy efforts to fix the d word like putting the “dis” in parentheses to emphasize ability. This has always seemed to me like putting antlers on a cat. Diversions are seldom more than gestures and unless you’re using sign language gestures don’t mean much. Most if not all disabled will agree we’ve had enough of gestures.

The d word can’t describe me or the hundreds of d people I know. My band is made up of practical men, women, and children who have imaginations, wisdoms, loves, sorrows, tastes, and ambitions. For them the d is a horse collar—outdated, heavy. No one needs a horse collar anymore. Blind I’m disabled by the idea I’ve nothing to give. Disabled I’m doubly blind—not seeing becomes figurative worthlessness.

Citizen is better. I’d like my value to be understood as a matter of the hive. And yes, “value” is another tell tale heart. Value for whom? What does value mean? Why should the tax payer pay for a kid with Down syndrome to go to school?

Hitler called the disabled “useless eaters” to suggest the state shouldn’t support the unproductive. The presumption of competence, that the disabled have potential can’t co-exist in a purely industrial and essentialized vision of human bodies. It’s a terrifying vision. The d word is outworn, dangerous, and like the horse collar above, unsuited to a century when work itself is being reexamined.

I believe the future of work will involve more and more autonomous systems—robotics, driverless cars, supply chains that are fully automated. What will work mean for humans? It’s possible that deconstructing the d word will be important for everyone. Or it already is.

The Blind Eyes are Lonely Hunters: My Life in Higher Education

1.

They come late. They had some way to travel. The blind eyes enter a room. Sighted colleagues have read all the reports before them. And the man with the blind eyes sits down. Accessible materials are not provided. The others call him “professor” though it means little. He’s without info like a cat without whiskers; like a ghost without living people to haunt; a ballplayer without a glove. Now in his early sixties he comprehends how improbable his professional life really is. He’s not meant to be here. He’s been told so all his days.

Nevertheless…

He reads everything he needs to. Since the committee never gives him the materials in advance he must read the agenda and the report while everyone else has already digested them. In this way he is sub-literate and it proves their point, their implicit bias for atopic literacy is questionable. Reading differently, slowly, after the fact, from the margins, why that isn’t reading at all.

2.

That he’s lonely in the academy is unquestionable. Because he studied poetry in his youth he knows a good deal about loneliness and understands its spiritual and secular effects. He loves Jesus for his brave solitudes and his sacrificial acceptance of pain. That Christ never abandoned empathy, never unclenched the burning rose of love, he keeps in mind always.
But he’s lonely as a lost shoe, like a fish still respiring in ice. He’s a bird flying underground.
You see, he did study poetry. Analogies are his anodyne. He’s lonely as the rains arriving on time.

3.

Poetry, the writing of it, the study of it, was for him a reasonable accommodation. If he couldn’t read forty books in a semester he could read three poems well. He knew the smell of rotting pears and why it broke Goethe’s heart. He understood why Byzantine louts secretly hated their libraries. He saw in the Codex Sinaiticus proof of the inalienable wisdom that we’re small. We are very very small.

Human beings are questions asked of another question. Yeats: “The world is full of magic things, patiently waiting for our senses to grow sharper.”

As his eyes will never grow sharper he will open to magics.

More Yeats:

“Come away, O human child!
To the waters and the wild
With a faery, hand in hand,
For the world’s more full of weeping than you can understand.”

4.

So poetry was my first educational accommodation. And a beautiful irony it is, for poetry is not reasonable at all.

Tone ex nihilo.

I’m familiar with all those songs that start from nothing.

5.

I am a senior faculty member with a distinguished professorship at Syracuse University. I’m also conditional in the agora. Just two weeks ago a man who I assume was a professor, for he had the angular characteristic gestures of privileged catastrophe, came unbidden into my personal space (such a lovely modernist, cosmopolitan conceit, personal space) and told me that by not picking up my guide dog’s feces I was “antisocial”—which is of course confirmation bias at best, and unsympathetic gibbering at worst—but either way, it was snowing hard, I had no idea where a trash can might be, and who in their right mind picks on a blind person?

I’m contingent on my campus. Alright. Alright. I know all about the first handwritten manuscript in a Slavic tongue. Old Finn Vainamoinen is my secret friend. I know how to enter and leave the guts of dead shamans and steal their secrets.

6.

There’s a tremendous freedom to the imagination. Though I’m often not welcome in academic environs (insisting on accessible web pages; inclusive software; descriptive videos; braille signage ((of which Syracuse has very little))) demanding my dignity; I know all about the cuneiform implications of sharp edged shadows and all their ironic and skeptical intelligences.
Around me everything is alive.

All my poetic currencies stay at the right rate.

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 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