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Off the Page: Notebooks of an Occasional Optimist (A Rededication)

For almost twenty years this space has been called “Planet of the Blind”—a nod to my first memoir and, for a long time, an accurate description of its subjects: blindness, accessibility, the struggles of opposing ableism. That work isn’t done — it never will be — but the blog has quietly outlived its name. Over the years I’ve used this space to write about disability rights, but also about history, horror films, wordplay, literary biography, and the jottings of other writers. Its time for the title to reflect the writing.

So: welcome to “Off the Page”

I’ve always been drawn to the notebook as a form. Years ago I co-edited (with poets David Weiss and Deborah Tall)  “The Poet’s Notebook” for W.W. Norton, a collection of the fast jottings, marginalia, and half-formed thoughts that poets keep before a poem exists. There’s something clarifying about the notebook— unpolished, occasional, closer to thinking out loud than to argument. This blog has always worked that way too, even when I didn’t say so. A post about accommodation law sits next to a post about Bela Lugosi which in turn sits next to a fragment from an actual notebook. That miscellany was never a flaw. It was the point.

As for “occasional optimist” — I chose the phrase carefully. More than thirty years of working on accessibility at universities, watching the gap between institutional assurance and grassroots reality, teaches you not to be naive. Optimism, for me, isn’t a temperament so much as a discipline — something closer to what Gramsci meant by pessimism of the intellect, optimism of the will. I don’t expect things to go well. I do the work anyway, and every so often — reading a poem, watching a student’s reading habits change, standing at a lectern in a room full of people who came out for disability poetry on a summer night in Washington — I catch myself feeling something like hope. Occasional is the right word. Earned, not constant.

So this is still the same notebook it always was: kept in the old commonplace tradition of writing things down because they mattered enough, that day, to write down. The title’s new. The habit of attention behind it isn’t.

Thank you for reading, then and now.

— Stephen Kuusisto

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Thank You Jeffrey Brown of PBS News Hour

Stephen Kuusisto to appear on PBS News Hour
Image: Logo of PBS News Hour

Tonight the PBS NewsHour will air a segment about my new book Have Dog, Will TravelThe piece features an interview with Jeffrey Brown whose reporting on literature and poetry is well known to book lovers across the nation. Jeffrey is also a poet whose first collection The News is available from Copper Canyon Press. In our time together we talked about poetry, civil rights, disability culture, dogs for the blind, the field of disability studies, and the power of literature to bring people together around social justice movements. And yes, there’s a lovely dog, Caitlyn, a sweetie pie yellow Labrador from Guiding Eyes for the Blind.

The program airs locally, in Syracuse at 7 PM. Check your local listings.

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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:
Amazon
Prairie Lights
Grammercy Books
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 

After Heart Surgery

I am a writer of nonfiction and friends have suggested I should write about my recent heart attack. But write “what” exactly? I was in danger of dying. I had open heart surgery. I spent a long time recovering.

What’s more interesting is that having had coronary bypass surgery I’m not the same person.The cardiologist said it would be six or seven months before I’d begin to feel like myself. What he didn’t say is that there’s never a return to the former body—the one where you got up, bent over, tied your shoes and thought about berries. What he couldn’t tell me is that I’d feel alien in my body evermore, even after the most significant healing.

Because I’m legally blind I have tension headaches. My neck and shoulders and the muscles around my eyes turn hot and then they throb. I thought I knew pain. I thought post cardiac repair-life would be simple once I could walk.

Imagine, if you will, a pipe organ, all those pipes crying out. Inside my chest there’s a set of wires holding my sternum together. Its a compound structure and it sends signals in a kind of nerve damaged partita—a score for solo instrument. My surgical site remains sore. My sternum shifts when I lift a plate. My balance is shot. I drift sideways on the sidewalk. OK. I’m walking in circles with an apple in my hand, testing the waters of the next life. This is a way of being.

So its the metaphysics of post-surgery I’m after. I want post-reductionism. Meanwhile I take a lot of pills.

A Morning Journal About Monsters

If you think you’re the monster that’s alright
If you think you’re alright that’s monstrous
Let’s telephone the monster
“If you want to speak with the monster, press one…”

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I was raised on moonbeams that came through a small window…

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“What would an ocean be without a monster lurking in the dark? It would be like sleep without dreams.”

― Werner Herzog

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Up early rummaging through the medieval stronghold of my skull
But I do it with confidence like a chess master

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If you think you’re the monster that’s alright
It worked for Nietzsche

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Sometimes when I call the monster I get Werner Herzog

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The joke about the freak show is the monsters were at the edge of the fairground thriving on their emptiness

The “freaks” were just birds with damaged wings…
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Oh come see the monster
Hurry…one slight bruise and he dies…

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Michel Foucault thought he understood how monsters are made
He imagined they came from architecture and the bourgeois tendency to shuffle papers
He was a child of his age
Monsters need no scripts
They make and remake themselves from slivers of imaginary glass

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Once while teaching at the University of Iowa I told graduate students that 90 per cent of the imagination is bad for you. I’m revising this to 95 per cent.

Eventually the monster’s tears turn into spectacles…

Yeats and the Monkey Gland

I was going to write about William Butler Yeats and the famous monkey gland transplant but it was the monkey I wanted to think about. Where did he come from? Did he have a name? Presumably they had to kill him. Did they sing to him as he died or read a poem? Maybe there was a sting quartet in the operating theater. If the monkey died while listening to music what would have been played? Did anyone interview the musicians afterwards? Maybe there were no musicians. Maybe they used gramophone records.

It turns out Yeats didn’t have a monkey gland transplant and the story is an urban myth. I was really disappointed. I wanted a genuine monkey to eulogize. I wanted to think about the monkey’s youth. Of course youthfulness is the sub-text: in his late sixties Yeats wanted his sexual drive restored. Instead of transplanted monkey glands he had a kind of vasectomy. He had his operation in Harley Street, London in April 1934. The surgeon was Norman Haire who was England’s foremost practitioner of a rejuvenation procedure pioneered by Eugen Steinbach, an Austrian physiologist who believed that modifying the sex glands could restore youthfulness. His British follower Dr. Haire was briefly famous as the restorer of men and was known to have operated on two hundred patients. Apparently he also performed the procedure—really a kind of vasectomy—on H.G. Wells.

No monkey. No string quartet. My speculative morning walk almost ruined…but where did the monkey story come from? In the early 20th century a doctor named Serge Vonoroff transplanted slices of monkey and baboon testicles into impotent men. For a time he was in such demand he started his own monkey farm in Italy. So there were monkeys. But not for Yeats. By the way, the word “monkey” never appears in Yeats’s poems.

Spinoza and the Cripples

Spinoza wanted to free God from mysticism. My friend X wants to free his wheelchair from superstition. The symbolic mind is the island we can’t escape. Disability figuration still comes in only three flavors: inspiration porn, evil cripples, or medical miracles. Notice than none of these has anything to do with disabled people themselves. This isn’t just an American problem. Neoliberalism long ago reignited the fuse of embodied inconveniences. Fascism of course has always loved this game. Spinoza: “Emotion, which is suffering, ceases to be suffering as soon as we form a clear and precise picture of it.” It is hard to get a clear and precise picture of disability when medical metaphors, social disdain and fear are rampant.

My Grandmother and Dynamite

My grandmother was the Mrs. Havisham of dynamite. About twice a year she’d go to the Laconia, New Hampshire Police Department and remind the cops she had roughly 200 crates of TNT in her cellar, and twice a year they patronized her with “yes, yes,” and “dear, dear” and “there, there” and that would be the end of it. But then one day she brought a box of decaying dynamite sticks into the station, plunked it down on the desk and said, “My husband loved dynamite, and he left me a house crammed with the stuff, and he’s been gone a long time, Christ, for all I know he’s in Dynamiter’s Heaven. But dynamite decays God dammit, and the whole house is going to blow the next time somebody rings the doorbell!”

It was the doorbell that got their attention.

The American Scowl

Americans think that people who scowl are really really smart. This is a result of the industrial revolution–the bosses grimaced and the working classes grimaced and after about fifty years of that kind of thing well, you don’t have to be Darwin to figure it out. Americans scowl as a means of protective coloration if you will. And since everyone is scowls (except news anchors) it’s impossible to employ social gravitas as a yardstick for stupid thoughts. Another way to put this is that everybody in America has stupid ideas and the grimace is the true embodiment of the social lie that something deep is going on under the surface.
The current putative president of the US is the Wizard of scowling. People keep asking on social media platforms and in the legacy press, “how did people vote for him?” And we hear all kinds of nearly true things: racism, owning the libs, misogyny, toxic men and their baby incels, lack of critical thinking, illiteracy, its a long list. But I tell you its the scowl. He scowls and lies about everything—and I don’t need to say any more. The scowl is his biggest snake oil trick. “I’m serious! America is being overrun by vermin people! Vandals got into my reflecting pool!”
All delivered with the moue of disgust that marks a good scowl. That mark of distrust and suspicion which good people find repulsive.

Rejocing, Diversity, and the Thermal Layer

Several years ago I came across a small pamphlet called Rejoicing in Diversity by Alan Weiss. The subtitle of the booklet was: “A Handbook for Managers on How to Accept and Embrace Diversity for Its Intrinsic Contribution to the Workplace”–-certainly a mouthful and perhaps not much of an advertisement. But I liked the word “rejoicing” and I also liked “intrinsic” for when you put these words side by side they speak of poetry. (The Chinese have two ideograms that stand together for poetry: a figure for “word” and a figure for “temple”). In any event, diversity in the workplace is seldom framed in ways that suggest spirit. Yet at the core of culture, spirit is all there is. Take away politics, real estate, the fighting over which end of the egg to crack and what you have left is the human wish for meaning. We tend to lose sight of this in Human Resources circles, substituting phrases like: Raising the Bar, Leadership, Assets, and the like. Talking about spirit is embarrassing. It’s like talking about the philosophers’ stone. Not even medieval historians feel comfortable talking about alchemy. You might look foolish. And we all know that the workplace should not be foolish.

I have advised many organizations on matters of disability and inclusion over the years. These opportunities came about because my first book of nonfiction was a bestseller and because for a time I was a senior administrator at one of the nation’s premier guide dog training schools. I had the opportunity to travel widely. Between 1995 and 2000 I visited 47 of the states in “the lower 48” and spoke at local, state, and federal agencies and public and private colleges. I have advised lots of blue chip organizations including the Museum of Modern Art in New York, the Metropolitan Museum, the Kennedy Center, even resorts and hotels. Inevitably, wherever I have spoken I’ve heard the rhetoric of middle management: “empowerment”; “equal opportunity”; “productivity”; “zero tolerance”; “bias”; “sensitivity” and the like.

There is nothing wrong with these terms but to paraphrase Bill Clinton there’s nothing right about them either. And this is because the terms have no alchemy in them. They’re just nouns. Not all nouns have spirit inside them. The word “battleship” has no spirit but the word “blueberry” does. One of the first things a poet has to learn is that not all nouns are obedient to the soul.

Well meaning organizations (and some that may not be so) rely on the rhetoric of inclusion without imagining the opportunities for soul–and I mean “soul” the way Marvin Gaye would mean it: its what’s goin’ on. The human soul is present everywhere whether management acknowledges it or not. By way of analogy one can think of management as playing “battleship” while the soul is picking berries. Human souls are looking for ways to be fed and to be happy; management is often trapped in brittle or arid pronouncements.

Alan Weiss wrote:

“I have had the rather unique experiences of providing comprehensive reports to top-level executives on the acceptance of diversity in the workplace, only to have them shout, wide-eyed, “That’s not my company you’re describing!” Yet the feedback has been based on extensive focus group and survey work. Who’s wrong?

No one is wrong. What’s happened is that the respondents have reported what they are actually experiencing, I’ve conveyed that feedback accurately, and the executives are using their own intent and strategy as their frame of reference. The psychologists would call it cognitive dissonance–fully expecting one set of circumstances, while experiencing quite another.

The phenomenon at work is what I call the “thermal layer,” which is a management layer capable of distorting communications and directives it receives, turning them into something quite different. Managers in the thermal layer are the ones who actually control resources, make daily decisions and deal with the customer. They often have strong vested interests in preserving the status quo…think they have a better way of doing things, don’t trust senior management, don’t buy-into the strategy or, for whatever reasons, have some agenda of their own. “

Alan Weiss has perfectly described the breakdown that most often creates obstacles to true diversity and inclusion–or to use the language of the soul, communal berry tasting and picking.

For many years I’ve been asking folks at the universities where I’ve taught to take ownership of disability and accessibility and I have found a deeply invested thermal layer–a phenomenon I like to call the “Campus Rope-a-Dope” to borrow from Mr. Ali. The Campus Rope-a-Dope takes advantage of highly silo-ed administrative hierarchies to in effect pass the buck where disability and accessibility are concerned. Let’s be clear: no one wants to be identified as being part of the thermal layer just as no faculty member wants to be outed for being “dead wood”–and let’s also be clear that the person who persists in calling for blueberries when everyone else wants to talk about battleships will eventually be the victim of considerable distortion.

Alan Weiss again:

“Organizations seldom if ever fail in their intent, executive direction or strategy formulation. They fail in the execution and implementation of their initiatives. Nowhere is that more true than in the accommodation of diversity.”

For my own part I’ve called for universities to provide accessible bathrooms in buildings where I’ve taught. The struggles were astonishing. At the level of departmental administration, no one knows who’s in charge of these matters. That’s because the thermal layer is in charge. And the T.L. has a hundred silos. It also has committees.

I was once upbraided at the University of Iowa by someone from the human resources department. I’d been calling for the installation of assistive technology in the classrooms where I’d been teaching for over three years. The lack of compliance and communication around the issue had been comical and my method of handling it had been to bring my own talking laptop into each classroom and manfully wired it to the projection system–sometimes this worked and sometimes it didn’t. My every teaching experience was therefore a kind of gamble. No one was in charge. How was I upbraided? I was told that by calling attention to my difficulties with assistive technology compliance I’d done considerable damage to my reputation with the committee that handled disability issues–the point being that I’d apparently not gone through the proper channels in my requests for accommodations. This is how the thermal layer works. The thermal layer likes to deflect by distortion. And there were no proper channels.

Alan Weiss:

“How could anyone oppose an accommodating, equal-opportunity workplace?”

“Well, we know that some people can, sometimes with malicious motives, sometimes with prejudicial judgment, and sometimes because they perceive themselves to be adversely affected by the policies. You must be constantly on the watch for thermal zone reactions and distortions. If there’s a policy or value which causes conflict in the workplace, bring it to the surface and discuss openly. If there are misconceptions about policies, resolve them. The failure to do this doesn’t make the policies go away, it simply preserves the thermal layer until, like the executives above, the key decision makers get some shocking news. The reaction to that is usually worse than any other alternative, because senior management will try to legislate change rather than help people to embrace it.”

This brings us back to blueberries vs. battleships. The spirit of diversity vs. the demeaning of diversity initiatives through the employment of thermal language.

Because no one is really in charge when it comes to planning and implementation all disability accommodations are treated reactively and not proactively.

Boolean Cripple

Disability taken as a concept is a perfect Boolean figure. If X = the abnormal body, and Y = the normative body, then one may consider all embodiment is disjunction.

 

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When I was a boy I watched a neighbor’s cat patiently eat a fish down to the bone. The cat allowed me, a legally blind usurper, to lie next to her as she took care of the material implications of endurance. Even before I knew the proper term, I understood algebra.

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Now I have to climb into a near star. There isn’t much choice anyway. All embodiment is disjunction. Stars and bones are operands.

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Leap: I love those lines by Dorothy Allison, from her memoir One or Two Things I Know for Sure:

“My sisters’ faces were thin and sharp, with high cheekbones and restless eyes, like my mama’s face, my aunt Dot’s, my own. Peasants, that’s what we are and always have been. Call us lower orders, the great unwashed, the working class, the poor, proletariat, trash, lowlife and scum.”

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The associativity of “scum” is what’s called a “monotone” law in Boolean Algebra. Just thought this worth sharing…

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We are old friends, the crippled body and I.

I’m counting all the distributive names of identity while sailing to my star.