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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

On Teaching with my Friend John Robinson

First, check out https://www.ourability.com/ a consultancy called “Our Ability”–one of the premier platforms for connecting the disabled with companies looking to hire. John Robinson uses AI in the service of this and has been doing it for several years.

John and I are team teaching a class at Syracuse University which focuses on the history of disability and its accommodations. There is no book on the history of accommodations which is truly surprising and we’ve begun thinking about writing one. Meanwhile, as we teach, day by day, the advances in disability rights and inclusion of the disabled in society are being wiped out. On the one hand we talk about people like Judy Heumann , Jim LeBrecht and Ron Kovic, and on the other we have to address the deliberate efforts by the current administration to eliminate disability rights. Talk about re-arranging the deck chairs on the Titanic!

The course is being offered through the university’s program in health humanities. 

John’s story and mine are not far distant. We’ve both been unemployed and owing to our respective disabilities, we’ve been told we’ll never find a job. In my memoir “Have Dog, Will Travel: A Poet’s Journey” I recount how a blindness rehab counselor told me I could maybe find work in a nearby factory that manufactured plastic lemons. I had a grad degree. I’d been a teacher. John graduated from Syracuse having studied in the Newhouse School of Public Communications and the Maxwell School of Citizenship and Public Affairs, two world class academic programs. He struggled for years to find employment. In my case it was “who thinks a blind person can do anything?” In John’s it was “how can a person without full arms and legs even be in public much less in the work force?”

What does it mean to be teaching about disability history in just this moment?

The answer lies in part with optimism. Not the Pollyanna stuff. The striving kind.

Let’s celebrate what for lack of a better term one might call the optimistic imagination as practiced by cripples.

I’m in mind of G.K. Chesterton’s assessment of Dickens, that he was: “delighted at the same moment that he was desperate. The two opposite things existed in him simultaneously, and each in its full strength. His soul was not a mixed colour like grey and purple, caused by no component colour being quite itself. His soul was like a shot silk of black and crimson, a shot silk of misery and joy.”

One must be risible in the boot black factory. (Dickens-Chaplin.) Its likely a tee shirt slogan: we hope in misery. As for the poetic imagination printed pages are often sad even when they propose optimism and no honest writer can ignore it. What did J.P. Morgan’s library smell like in 1902? Short answer? The vapors of sorrow. 

Hope is comedy. The sadness of the world is irrational. This is how I live. I think of Auden’s line: “All we are not stares back at what we are.” If an empowered disability identity is “out” and on the street it’s ironies are inherently complicated by the acculturated language of normalcy. This is both a signature subject for performance theory and disability studies. It is also the seed bed of literary consciousness. Watch out! The crip writers are comics. 

There’s nothing funny about the life and death struggles of the disabled who are right now protesting outside government buildings and being manhandled by police for daring to defend the right to live. Don’t get me wrong. But political activism is always a sophisticated troubling of the public nerve, it always resists normalcy. That may be the only definition of hope in our time.

The disabled want jobs. They want to live in their communities. They want health care.  Imagine! How radical!

Meanwhile, I sang a song at the end of class yesterday, a song I first heard sung by Pete Seeger called “The Blind Fiddler”. Here are the lyrics:

I lost my eyes in the blacksmith shop in the year of fifty-six
While dusting out a t-flange, which was out of fix
It bounded from the tongs, and there concealed my doom

I am a blind fiddler, and far from my home

I’ve been to San Francisco, I’ve been to Dr. Lane
He operated on one o’ my eyes, but nothing could he gain
He told me that I’d never see, and it’s no use to mourn

I am a blind fiddler, and far from my home

I have a wife and three little ones dependin’ now on me
To share all my troubles, whatever they may be
I hope that they’ll be careful, while I’m compelled to

I am a blind fiddler, and far from my home

I say, as all disabled people must now say, this is our home, this America, right here, and we’re not going to beg.

 

 

Home from the Hospital with Uncle and Aunt History

Last summer I wrote a sequence of poems featuring Uncle and Aunt History—two avatars of consciousness, politics, and outsider-ism. They’re shamans who, along with  visiting the dead, also love rock and roll, old libraries, and Voltaire’s bath tub.

The incitement came from Claes Anderson, a Finnish poet who began one of his poems: “Well, that’s it, said Uncle History.” That’s it. History is finally fed up. The joke (such as it is) is that history takes longer to be pissed off than the rest of us.

Sometimes I wrote two or three poems a day—a Kerouac thing, first thought, best thought. I was weighing the improbability and luck of  being alive. I could have written a poem called “Uncle History Has a Heart Attack” (and still might…) but my coronary bypass surgery in April of 2025 was nearly impossible to process. I was alive against the odds and didn’t know what it meant.

Uncle and Aunt History stumble across the fields after harvest. The world is dingy: muddy boot prints are everywhere. There’s blood on the stones. One of the first poems I wrote went like this: 

“Come on along,” Uncle History says

Channeling Robert Frost—

“You come too…”

But then he forgets his way

(Backwards looking

Does this to you)

Crustacean-travel 

One might call it

And its easy to fall down

As the ancestors

Left stumbling blocks

And easy

To forget 

Where you started

Lost among mud colored houses

At dusk 

“Where did I begin?”

“Whose path is this?”

“Yes I’m talking to myself”

The self-behind me

This last minute affair

Of nostalgia 

And fear

On the barren tracts

Where a forest once stood

Just outside the city

I’m guessing you know the landscape I’m talking about. Twisted rebar pokes up where trees used to be, and where once there was a filling station. Whose path is this? This is what you ask yourself after they’ve cut you open and stapled you back together. 

Jay Neugeboren, who, to my mind, has written the best memoir about recovering from heart surgery entitled “Open Heart” details every moment of a patient’s experience from the shock of diagnosis to the relief of recovery. Bypass surgery which we now think of as hum drum, is a wondrous thing and Neugeboren tells the story of having undergone the procedure with nuance. Anyway I found I couldn’t write this story. I let Uncle History say what I couldn’t:

Uncle History has always hung around hospitals…

Before they discovered ether 

Patients screamed their lungs out

(From “patiens” 

One who suffers 

And the verb “patior”

Which means I am suffering)

He saw how non-transactional it was

Everyone suffered 

Tuberculosis for the doctors

Women bleeding out

Asklepios with his snakes

No one emerged alive

Which was and is

The source of history 

Uncle carries a stalk without blossoms

Inside his coat…

My surgery was brutal. When I was in intensive care I fell in and out of consciousness. One morning I woke to see a black bear walking past the glass wall separating my room from the external corridor. I asked for strawberries because that’s what the bear would have eaten. I believed in that bear. 

There’s the rub. What precisely did I believe in? Is belief ever clear? Is there some kind of exactitude to it? I believed in the bear. And the berries. 

**

Uncle and Aunt History are alone in a hut in Lapland and they’re fidgeting because they don’t know the names of things that are commonplace:

“It’s a hard road”

says Uncle History

But hardest

For the road builders

As there’s no name for them

You can look it up—

No name

Just euphemisms

“Pavement pros”

“Asphalt guys”

Even the Roman’s

Had no term for them

Though “slave” works

What does it say

That such

An important job

Has no word

Uncle 

Thinks he knows

But he reckons

You can only

Get to it 

Through silence

And walking in circles 

I actually was walking in circles since I live on a cul de sac and around and around I went in my slow recovery. There are lines attributed to Basho: “Real poetry, is to lead a beautiful life. To live poetry is better than to write it.” Uncle History tapped me on the shoulder:

No one can fool Uncle History 

Better than history 

So who better to call on

Than Herodotus 

“Of all men’s miseries 

The bitterest is this: 

To know so much 

And to have control over nothing.”

It’s funny really 

Facts and floods 

Happenstance 

And horror

No one driving the car 

This seems right—

Aunt History knows better 

There’s pain at the center 

Of everything 

Facts can’t be ignored 

Which is 

Restraint itself

There it was: “To know so much/And to have control over nothing.”

**

Few non-disabled (whatever that means) understand that for us cripples, the business of accommodations starts inside us. Every disabled person is a neo-Platonist, imagining the device that will get you through. Aunt History knows this:

Aunt History Carves a Crutch

When you’re disabled “those” others

Think they can see right through you

Your watery eyes, thin bones…

They don’t think this

About mushrooms 

Or coconuts 

Or kitschy carved 

Pinocchios 

And of course

To a large extent

They’re not thinking at all

They’re just seeing 

The dumbbell clots

Of fussy prejudice 

And you, trembling one,

You got in their way 

As they were seeing themselves 

But don’t call “them”

Narcissists

For like nothing else in nature

They’re afraid of death

And again

You simply got in their way… 

Thoughts while home alone

Knife on wood…

**

There I was, alive in the wild carrot leaves, trying to figure out my next move. Meantime I knew a few things for certain. I wasn’t afraid of dying. On the eve of my surgery I felt calm. And I also knew (and know) that my recovery is an ongoing affair and I will never be the same and I’m carving the crutch. 

Yesterday I wrote about a book I read as a college freshman, a novel that, as I now remember it, has more than passing relevance to this cultural moment. There were other books that made a serious impact on me—of course, every curriculum demands many books. In my sophomore year Eric Auerbach’s “Mimesis” caught my attention. It was an unlikely book to do so. It required the reader to know a thing or two about literature. I had yet to read much of anything. And there I was, reading a deep critique of the western imagination. I had no idea what I was looking at. 

From Claude: 

Broadly, Auerbach traces the slow expansion of who and what literature considers worthy of serious representation: from gods and aristocrats, to Christian humility, to Dante’s synthesis of the sublime and the everyday, to the rise of the realist novel in 19th-century France (Stendhal, Balzac, Flaubert) which finally represents ordinary contemporary life in full social and historical context, and ends with modernist stream-of-consciousness (Woolf, Proust) as a new fragmentation of represented reality.

I like the way Claude summarizes but my experience of the book was different. Rather than feeling the sweep of tradition I was struck by the asperity and nuance of Auerbach’s prose. He was truthful: 

Examining the Homeric epics from the perspective of when and by whom they were composed, Vico refutes generations of interpreters who had assumed that because Homer was revered for his great epics he must also have been a wise sage like Plato, Socrates, or Bacon. Instead Vico demonstrates that in its wildness and willfulness Homer’s mind was poetic, and his poetry barbaric, not wise or philosophic, that is, full of illogical fantasy, gods who were anything but godlike, and men like Achilles and Patrocles, who were most uncourtly and extremely petulant.

When you’re a kid reading criticism, clarity and truth matter. This passage was undeniably true. Homer was not a sage, he was the purveyor of big feelings. He was a fantasist. And man, could he spin a story. I was in mind of this as I watched Nolan’s film version of The Odyssey, which notably hacked out the poetry in favor of a numbingly tedious plat. This happened. This happened. We ran from the island. We ran and ran. See Odysseus run! 

Nolan deleted the barbaric poetry. I digress. 

The way in which we view human life and society is the same whether we are concerned with things of the past or things of the present.

Auerbach believed the active imagination is fully alive and a significant part of us but is also part of nature. I remember thinking, “If I wake the fuck up I might get some of this.”

That Book from Freshman Year

I’m at an age where things I read long ago resurface. One book that has popped above the waves I read first at 18, Robert Heinlein’s “The Moon is a Harsh Mistress”. Its.a science fiction classic.

Whenever an old book returns you’ll likely recall who you were when you first read it. I was just starting  at the University of New Hampshire and had recently and barely recovered from a  bout of anorexia nervosa. I weighed 108 pounds when I should have hit the scale at 130. Oh there were so many shoulds…

Heinlein’s narrator is Manuel “Mannie” Garcia O’Kelly-Davis, a one-armed computer tech with who talks in a clipped patois—half Russian, half Spanish, all Moon—which makes the whole book feel like a translation from some language that doesn’t exist yet, which is the point. Lunar society, several generations removed from the convicts who were shipped there, has drifted into its own customs: line marriages, polyandry, a code of manners built on the plain fact that women are scarce.

Mannie’s real companion, though, isn’t human. It’s Mike—HOLMES IV, Luna’s central computer, who has crossed some invisible threshold into self-awareness and discovered, in the way of the newly conscious everywhere, that he’s terribly alone. He and Mannie become friends first, conspirators second. Mike has jokes. He has doubts. He has, in his own circuited way, a soul—and Heinlein never quite lets you decide how literally to take that, which is the most quietly moving thing in the book.

Into this friendship wanders Wyoming “Wyoh” Knott, all piss and vinegar, and Professor Bernardo de la Paz, a self-declared “rational anarchist” who has clearly thought harder about the mechanics of injustice than anyone on the moon. There’s a protest which ends in bloodshed and the three of them back into a revolution—one they can only hope to win because they have a computer who can forge messages, invent public opinion, run the numbers on a war nobody sane would fight.

What follows is Heinlein at his best: building an argument disguised as a plot. TANSTAAFL—there ain’t no such thing as a free lunch—becomes both a joke and a creed. Freedom, in the novel, is never given; it’s paid for, usually by people who didn’t ask for the bill. The “grain catapult” that has always launched Luna’s tribute to Earth becomes, in the end, the only weapon they have—turning an instrument of extraction into one of leverage, which feels almost too neat a metaphor for a colony finally refusing its own usefulness.

It was the autumn of 1973. Nixon was in the White House. The Viet Nam War was spreading into Cambodia and Laos. Then, as now, nothing made sense. 

So here we are. AI might destroy us. Trump declares he needs no accountability while the oligarchs laugh. 

I thought Heinlein was just a fanciful libertarian nerd. I got that wrong. 

 

A Brief Homage to the Gods of Chance

It was the gods of chance 

Brought me back here

There’s no mistaking them

They’re crippled also

 

**

Somewhere in the distance, 

That old fashioned medicine…church bells…

 

**

I love you teddy bear

Though now you’re in the landfill

 

**

Once I wrote a folk song about how Thomas Edison ruined my life

**

The broken gods brought me here and gave me to my broken parents. And look! I’m having a perfectly broken life. But I do persist in trying to put tiny machines together.

**

In poem-village all the horses graze on sweet grass

**

They are writing poems in the next village

The people there are admiring clouds

 

Future Pneuma and the Twins, or Karl Jasper Behind the Woodshed

Two halves of a life were debating like unhappy twins. Both had studied the classical methods of confession and so they were voluble but insincere. Neither one knew how to escape forward. Anyway, it was late in the day and shadows spread across the lawn and the transitive life stood between them—one may call her “future pneuma perfect” though it scarcely matters for she can take care of herself. 

“What,” she said, “causes you to think the past is definitely settled? Don’t you know it’s changing right now, beneath your feet?” “This is the future of resignation—patience, day-dreams, small plantings…”

The twins, who’d been bitching about memories of childhood, went silent. Future Pneuma Perfect was suggesting hopefulness was made of glass shards and sacrifice. 

The twins cried out this was un-American. They protested, the future must be always happy happy and allotted without trouble. Have a Coke and a smile. Put your foot on the gas.

“There is no coming to consciousness without pain,” Future Pneuma Perfect said then, quoting Carl Jung. 

“You’re a snob!” Twin number one said then.

“Yeah!” Said number two.

“Yes,” said Pneuma, “but I prefer the word “snoot” as you see, I’ve learned from my mistakes.”

The twins, two halves of a life, didn’t know what this meant. 

And beneath them, like that scene in the Godfather where you hear the subway under the restaurant, the future was changing underneath them. 

Class discussion:

What are the classical methods of confession?

What does it mean to be voluble but insincere?

What is future pneuma perfect?

What does she mean by “I’ve learned from my mistakes”?

What’s more un-American: believing in time as an obstacle to fulfillment or, as the poet said, “lacking all conviction”?

Meanwhile FNP is still in mind of Jung: “One does not become enlightened by imagining figures of light but by making the darkness conscious. ’ Subway noises…

 

My Manifest Father

I’ve had a recurring dream for many years. My father returns from the dead. He’s seemingly unchanged but there’s a proviso to his re-birth, namely, he’s going to die again. Every moment is precious. He’s the best version of himself. My sister, mother, and I love him so much. But even as we talk with him we know he’s only with us for a few more minutes. 

Alcestis, Orpheus, Jesus, certainly this is a provenance of stature. Its also “Mono no aware”—steeped in recognition of transient beauty. These are clear. And to say the least, its significant as hell that my father died quite suddenly on Easter Sunday. Of course I would have this dream. 

My manifest father appears decades after his death. Carl Jung would say the personal and the archetypal have become fused in the image. As I dream about him, I’m also dreaming about my own relationship to structure, judgment, lineage, and what it means to be a son or daughter. 

So the dreams are an invitation. Jung would say they offer an invitation to practice what he called “active imagination”—a difficult process and one that should be done with a therapist. Essentially you re-enter the dream after quietly mediating, letting the images come, allowing the people in the dream to live while you’re awake. This is tricky. It requires tremendous meditative skill and a lot of practice. If I could do this, and I can’t, my father, mother, and sister would all be there. And if this re-dreaming isn’t trivial we’d get to say important things, though knowing time is short. In every version of this dream my father’s re-gifted time among us is short. 

The urgency is the key. Hurry. The bell is ringing. I’d ask him, who are we? Who are you? Are you the same or are you now my father on archetypal steroids? Do you love me more than you did in life? We wouldn’t talk about heaven. 

In life my father was warm to others, cold at home. This is an old story. In life he was successful in the “outer” world. At home he was an eclipse. (The eclipse is Emily Dickinson’s term for her own father.) 

Father we have so little time, I want to be you but in a  better version. I’m getting old. I get it: now I’m the father. I get it. But I don’t. Which is why the dream comes back.  

Who Really Cares About Trump’s Hair?

In a piece at The Nation, “The Embarrassment of Trump’s Midterm Convention” Joan Walsh writes: “I have to say: I almost feel bad writing about Trump these days. Yes, he’s evil, and has been for decades. But he’s also clearly unwell. He allowed himself to become a brunette earlier in the week (after decades of odd, strawberry-blond-dyed hair), then was shown to be hugely balding in a photo on Wednesday.”

This short passage highlights for me what ableism adjacent writing often looks like these days. I agree, Trump is a bad man. But the left spends way too much time focusing on how the man looks. Here he is again, looking uncertain as he descends from the airplane. Here you can see him struggle with a glass of water. 

The ageism, which is a form of glee, is wasted time. In the next few sentences Walsh writes: “Most days, he seems to wear an airline tray table over his ample behind and under his suit jacket. I can’t say. People speculate that it’s some kind of diaper contraption, but it looks too big and sharp-angled for that.”

Later she quotes J.B, Pritzker who opines that Trump has dementia. This, it seems to me, is closer to the truth but here’s the thing: the country is being run by the star chamber of Project 2025. That’s the story. The only story. Who cares about the lunch tray under his pants?

And one more thing: the fact that Trump is still sitting in that chair is the real story. As every fifth grader knows, this is a matter of who, what, where, when and why.

Walsh is closer to the truth as she sums up:

“Trump’s almost two-hour speech didn’t prove Pritzker wrong. “Pretend that I’m on the ballot,” he told the crowd. “I’m on the ballot. I’m on. Just one more time.” Trump is right, and wrong, in his belief that Republicans will come out if they indeed believe he’s running. To the surprise of many, myself included, Trump indeed proved adept at turning out infrequent voters for his wins in 2016 and 2024. On the other hand, he’s never been more unpopular, even with GOP voters. ”

Just remember, he’s not the real leader of the country. Personally I don’t care about his hair.

 

 

 

Steve Way’s Fear Is Justified and the Cripples are Not Alright

The news for us disabled is not good. How do you like your optimism now little fella?

Actor and film maker, and noted disability rights activist Steve Way has posted about the efforts to eliminate in home health supports for disabled citizens by the Trump administration.  You can read his substack column here: https://substack.com/@thesteveway/note/p-214895440?utm_source=notes-share-action&r=1g5gg8

Things are not OK in disability land. The right to live at home, in the least restrictive environment has been the law for a long long time. People fought for this right. Its now been taken away. How do you like your optimism little fella? 

I like my hopefulness. I like it that people of all backgrounds are waking up. But I’m also afraid. Very very afraid. 

Way writes: “On June 18 the Justice Department’s Office of Legal Counsel issued a 39-page opinion concluding that neither Section 504 of the Rehabilitation Act nor Title II of the ADA requires states to serve disabled people in the most integrated setting appropriate.”

As my eccentric and sometimes literally explosive grandfather like to say: “this is happy horseshit.” 

I have to get up now and go teach a class on disability and the history of accommodations. I feel like a man with an anvil on his back. 

Everyone I know in disability communities is justly terrified. This is not a drill. This is primetime leveraged ableism with side dish of eugenics. 

As I said in the class aforementioned just two days ago: the Trump administration likes to issue edicts but with no outcomes analysis. If you take the disabled out of their homes, then where will they go? One of my students said with a shiver: “to an ICE detention center?”

Gramsci: “Pessimism of the intellect, optimism of the will.” Can will be reduced to naïveté?

Whatever did Gramsci mean by optimism? Here’s a small quote from “Claude”:

The “pessimism of the intellect” half is the demand for total honesty about conditions: look at the balance of forces, the history, the structures of power, and don’t flinch from how bad or entrenched things are. Gramsci was scathing about wishful thinking that skipped this step.

The “optimism of the will” half is what you do anyway. It’s not a belief that victory is likely — it’s a commitment to act, organize, and build alternatives as though change is possible, precisely because resignation guarantees nothing changes. For Gramsci, writing partly from prison under Mussolini, this had real stakes: intellectual honesty about fascism’s strength didn’t excuse passivity.

Read Steve Way.