
1/ Disability and Poetry

The Propel Book Series
Stephen Kuusisto
For the past four years through a grant from the Propel Foundation, Nine Mile Press has been publishing books by disabled poets who are writing some of the best poetry in this country.
It may seem surprising that the world of poetry should be as infected with ableism as it is. Poetry is by its nature an enemy of the normalizing. Its innate antagonism to the normative in favor of the individualizing truths of human experience should make it open its arms wide to the complex sensoria and angle of vision of disability life. And yet it doesn’t.
Ableism, that inability of the abled to imagine the experience of others, happens even in literary circles. As a blind writer I’ve been asked: “how can you write with clarity about the world when you can’t see?”
“Outside the box” is a tired cliche but disabled poets show what it can really mean. Consider these lines by Tito Mukhopadhyay whose book Finding the Faces and Other Poems we published three years ago. For Tito seeing faces is next to impossible owing to his autism. Spotting a man with glasses on a bus he says:
I was relieved never to know his face. Looking directly at a human face is not easy for me. Faces blur or begin to turn into something else every time I try to look. I preferred a pair of reading glasses reflecting through the window - how the outside reflected back through the reflection.
Later he writes:
The Greyhound bus was a random moving point anywhere on earth, my eyes anchored to the reflection of Otto Manfred’s reading glasses, my head searching a story. These journeys are never long.
Tito’s poetry is hazarded: its discoveries are impossible to have imagined before setting out. There’s no framing of the eye.
Many people see disability as a metaphor for decay. Abled poets also think of poetry itself as a vehicle for sadness and abjection. Robert Bly titled his graduate poetry thesis at the University of Iowa “Steps Toward Poverty and Death.”
But the disabled poets I know are remarkably undead. They’re not sad without fingers. They don’t need to stand, walk, see, hear, or speak.
In an essay for The Iowa Review, autistic poet D.J. Savarese writes:
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Scandent scandal, my eye unmakes the world; it offers, in Skinner’s phrase, a “disintegrating framework,” one in which possibility dazzles. Dazzles because it does not yet cohere. High above the ground, my eye smells the light, listens to the flute-playing clouds.
In his book Swoon, Savarese pulls readers through a hundred disintegrating frameworks—the edges do in fact disintegrate:
Sharp Edges
The waves are like sandpaper
for the ear, burnishing sound:
sharp edges become round.
I used to play in that sound
before I had words, before the whir
had resolved into world.
Wading into its depth,
I would flap my arms like a bird,
make a similar sound—
my unfeathered father
feared I would drown.
Near the beach of my bed
lies an ocean by Brookstone,
Nights take me back
to such sound.
Savarese goes inside sound where nothing’s stable. A bed becomes a shoreline. Innocence, solidity, and machine noises mimic waves, and suggest the places from which language springs, places about which we still know next to nothing. Here’s the book’s title poem:
Swoon
The ear that hears the cardinal
hears in red;
the eye that spots the salmon
sees in wet.
My senses always fall in love:
they spin, swoon;
they lose themselves in one
another’s arms.
Your senses live alone
like bachelors,
like bitter, slanted rhymes whose
marriage is a sham.
They greet the world the way accountants
greet their books.
I tire of such mastery. And yet, my senses
often fail
to let me do the simplest things,
like walk outside.
Invariably, the sun invades
my ears
and terrifies my feet—the angular
assault of Heaven’s
heavy-metal chords.
I cannot hear
to see, cannot see to move.
And so, I cling,
as on a listing ship at night,
to the stair rail.
The synesthesia here isn’t easy. The sun invades the poet’s ears and terrifies his feet. Imagine André Breton’s sensorium minus the enjoyment. Breton: A tomato is also a child's balloon - Surrealism, again, having suppressed the word “like." Maybe. But autism is not always as fun. Savarese clings to a railing for all he’s worth. In his book The Humanitarian Dictator, Abhijit Naskar writes: “We, on the spectrum, are often misconstrued as rude or audacious. Problem is not that we feel too little, but that we feel too crippling much.” In his poem Savarese calls this sensation ‘the angular assault of Heaven’s heavy metal chords.”
“Telling” disability means resisting the falsified. If the disabled have been exiled by history, by the architectures of cities and policies of the state, disability poetry can change the terms of awareness.
The poems in Nathan Spoon’s The Importance of Being Feeble Minded have a toughness about them as if perhaps, the epistemology of disability is a street fight. As readers we like the fight. I’m reminded of Ernesto Cardinal’s utterance: “Life is Subversive.” Consider these lines:
I like snakes
there should be more snakes
lying on sidewalks and living room floors there should be more snakes
in bathtubs there should be more snakes
on the internet snakes
should be coiled under more tongues and more tongues should be the tongues of snakes
if you don’t understand this that’s fine and I’ll have to wish a plague of snakes
upon you and yours most days I find snakes
are confusing
Yes, there should be more snakes, both imagined and real, but meanwhile, let’s admit they are outside of polite society. As figures in a poem, they are designedly discomforting. As the rhetorician Jay Dolmage notes, we understand "imperfect, extraordinary, non-normative bodies as the origin and epistemological homes of all meaning-making.”
Even in the fragmented twenty first century, readers want to find community on the page. What does it “require”? One thinks of Mary Oliver’s “Instructions for living a life”: Pay attention./ Be astonished./ Tell about it. Anne Kaier’s How Can I Say it Was Not Enough is invitational though the invitation can be quite sober. Consider the poem “Collodion Baby”:
I shrank from my own skin for years,
withdrawing like a wave that leaves a yellow foam behind.
But my body waited for me all this time,
’til now at last I reach for kisses
like the naked baby in her crib.
If the body is viewed as a site for abjection then the poem should of necessity suggest something more interesting. This is body-mind:
For weeks, I languished in the ward, where nurses, tending war wounded men,
neglected me. Then my mom came back,
tucked me in a wicker laundry basket, carried me
down the great white steps of Allegheny General,
and nestled me where she could feed me when I cried.
“I tried hard,” she says. “I didn’t give up.” So, giving up had crossed her mind.
Just let the baby die she might have thought. This strange, disordered daughter.
When all is said and done, do facts speak alone? Or do I need to say,
“My mother took my life into her hands and brought me home?”
There’s gratitude here—an open-handedness.
Kaier writes:
After the Golden Afternoon
After the golden afternoon,
when the dark came down like a blade,
a sudden illumination spoke.
Last night, my widowed mother tossed her auburn hair
as if she were a girl of twenty.
“Oh, I turned heads,” she said. “The boys flocked around.”
She looked at me and smiled. “But I waited
for your daddy.”
Staring at her candlelight, at last I understood
how her creed had bound me:
beauty before marriage, but marriage isn’t everything.
What labor, this autumn, readied me
for this simple truth,
let it sit upon my mind
like evening sun on ploughed fields?
Kaier insists we stay open to the wisdom of forgiveness. Her poems are original because she says what forgiveness is for. It's a forgiveness labor— one lives with disability but doesn’t have to overcome it.
Lisa M. Dougherty’s The Dead Tree Garden is a collection “unlike” many a book because she insists there is life outside containment.
In her poem “Killdeer” she writes:
Why the sight of thought
Makes you stand perfectly
Still in the presence of her
Absence. You attach yourself to
Who takes you away from
The being that you are. Bird
Is it that you have forgotten
The cracked shell your heart is
Nests in the brittle shrubbery
Of the past growing more
Present, that you cannot even
Drag your unbroken wing
As if it had been
Brave to desire this
One transitory body.
It’s the “transitory body” we’re concerned with, the body we sense fleetingly and which we must must invariably compare to our own. In the hands of a striking poet, this comparison is urgent, tender, and sometimes dark. Consider “The Deep Falling Inside Her”:
Inside her there is a streetlamp
that some nights she can meet you under
not so far from the pain
as she would have you think,
she pulls you into her
do not flicker through the deep falling
inside her is a light
you haven’t before reached.
The space we feel in these poems would be hard to paint. This has always seemed to me to be one of the great virtues of poetry, that it can center for us things that can’t be seen. But feeling enters into these spaces. It often suggests the imagination has come from some great distance. There is a fierce independence to Dougherty’s work. Again, consider “Somewhere on the Ledge of Fallen Things":
Somewhere on the Ledge of Fallen Things
Maybe it’s a dust covered windowsill. A mantle often overlooked. Or a shelf in the bedroom of your grown child where her most favorite toys have sat long since having been played with. Did you not expect to end up here? At some point, waiting to be picked back up? I suppose you need me to tell you— you can’t be all broken. Not all at once anyway. Look here, a glass bottle with a chipped lip. You don’t really know why you kept it, but for how the sun still finds a way to pass its light on through. Is that nothing like you? Even the old dried out remains of what used to be a blow flower, left for years between a closed window and an open screen. It still remembers the soft breath of your child lifting its seed. And how she laughed when they all blew back and stuck their fluff in her hair. Are you laughing now? Maybe there’s still something here that can help you. Somewhere on the ledge of fallen things, an old wooden earring box your mother had your brother give to you on your seventh birthday. Its hinges nearly pried off from overuse. Or not? But anyway, have you opened its lid lately? If you found its lost song, could you sing it for me?— or just once, try?
Lisa Dougherty’s work reminds me of Tomas Tranströmer: “maybe there’s something here than can help you.” Tranströmer also said: “you can see beauty if you look to the side.” We want to see the essences but they’re not in front of us.
Finally, I’ve always favored poets with musical educations. Dan Simpson is both a classically trained musician as well as a poet. Reading his work I’m reminded of Pope’s observation: Music resembles poetry, in each/ Are nameless graces which no methods teach,/ And which a master hand alone can reach.
Consider then opening of his poem “Some Holy Saturday”:
You will rise from your bed at four-thirty in the morning,
to find bitter weeping outside your window
and your yard filled with trees that were not there the night before,
large leaves everywhere soaking your hair with dew,
the thick smell of olives heavy in the air.
It is Peter, still crying
up through the crust of the earth,
and though no cocks have crowed yet,
and there is no farm for hours,
you are poised for the marking of betrayal.
It is Peter, still crying/ up through the crust of the earth—spondee and dactyl mixing it up and behind them the oboe of the traduced heart. This is music in the service of spirit and while most of us cannot reach it, a master hand just might, especially if the poet who’s blind and thinking of Christ’s betrayal is walking the verse into being:
What will you do
if, following Leopard Road or Route 13,
you should be drawn by a congregation of curious crows
to Iscariot hanging from a tree,
the neck groove lapping over the rope,
his toga tented at the crotch?
And what if from the moon come strains
of Hollywood’s fourth cousin to Gregorian chant
with celluloid clicks and pops to let you know
this is old and serious?
This is a sober poem, a tone poem as Sibelius would have it, and for all its music the verse turns toward mentation and discovery:
And what if the man who made the cross
sleepwalks beside the road in the underbrush,
and your father now remembers
that yesterday, between twelve and three,
the sky grew dark over your neighborhood?
Will you kneel down in the road and pray?
Run to your home to take from your kitchen cinnamon and nutmeg,
the only spices appropriate for the Savior’s tomb?
Call the police?
Or walk to your church in silence,
hoping that the sun upon your back
is really the large hand of the fisherman reconciled?
I think here of Benjamin Britten who said of music: “It has the beauty of loneliness of pain: of strength and freedom. The beauty of disappointment and never-satisfied love. The cruel beauty of nature and everlasting beauty of monotony.”
Simpson’s poems propose that musicality should aim for making sense—of losses, of small or large discoveries, of the very business of inquiry. There is even comedy in this as the poet meditates on what takes the place of literature in the lives of those who don’t read it:
Let us pray for poetry
that begins in love
and then moves outward.
May it fill the mouths
of all who love.
“My dancing tumbleweed,”
the crane operator will say
to his wife on a Sunday walk.
And the bookstore clerk, leaving for work,
will embrace her beloved in the kitchen.
“Oh, my hot skillet,” she will say,
“my deep, deep fryer.”
Lawrence said he preferred his heart to be broken: “It is so lovely, dawn-kaleidoscopic within the crack.” Simpson asks us to conceive of our limitations as evocative and darkly comedic matters:
Schonberg
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Why would a young dog
give itself to guide the blind?
Ask the right question
to get a useful answer.
Did the dog have a choice?
What did the dog do,
once they neutered it
and slammed the kennel door
on its freedom dream?
It did its best to flourish.
And what about you—what
choices do you have left?
Do you take pleasure,
as Schonberg did in twelve tones,
unleashed by your limitations?
These poems display advantaged doubt. They are aesthetically subversive given the public’s longstanding view of blindness—that it’s a profound limitation that goes beyond sightlessness to suggest a blunted capacity for knowledge. When a blind poet invites readers to unleash their own limitations via the challenge of joy, one realizes how few analogies are to be found in the work of whatever we mean by “non-disabled” poets.
In June of 2026 we’ll be publishing two new volumes: Returns: Poems Selected and New by Kenny Fries and If Only I’d Turn Into Someone Else by Sanni Purhonen, translated from Finnish by Stephen Kuusisto, Mika Suonperä, and Sanni Purhonen. Here are two poems from each upcoming collection. Stay tuned.
Sanni Purhonen:
when I grow up, I'm going to be
a one-legged dancer inside a box
I go to Home Depot to pick up a saw
my fingers stiff as nails
a blood bolt in my mouth
it’s fashionable to be a freak
that’s what everyone wants anyway
a poem about pain that isn’t real
as a child my hips were shot with nails
even that didn't really hurt
I had the best pills
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Kenny Fries:
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Anesthesia
the night surrounds
skin and the moon full
sends yellow light through
on cold nights
silence magnifies sound
and an elevator closing
to a child is an end
an amputation
you see they have taken
my memory the memory
of my own body soundless senseless
tearing of the skin
once belonging
to a three-month baby boy
there are scars in a cold night sky
touch them
touch them and imagine
a child buried
in silence footsteps
make him reach
beneath white sheets feet
once a child's
feet still kicking
I want to hold them
as if they were
my lover
but pain
like time happens even
while you sleep
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