Author: stevekuusisto

Good old Auden, so stinky and sad
In and out of love—
His ghost rushes past
Like a night train

**

The first time they broke my heart—
Well, I won’t tell how
But I promised myself
And man oh man

**

Blind, eyes still ache
Old, still laughing
Frozen tears in my drink
Still don’t know the teacher

**

Poetry?
Makes nothing happen?
Turn to the the walking stones
Tell them

**

I was thinking of you
I guess you’re still alive somewhere
You who read my thoughts
Better than anyone

One of the interesting things about ableism is that whatever form it takes it occupies the future perfect. There will be time enough to make things right for the disabled but not today. One may fair say “not today” is the motto of the thing. “Non hodie” in Latin. Picture a flag bearing the image of an indolent house cat. Not today will we question our assumptions about discrimination. BTW: the ableists also avoid saying “maybe tomorrow.”

If you’re disabled and require reasonable accommodations you likely know all about this. At Syracuse U where I work I’ve been agitating, pleading, begging for accessible documents and websites for over a decade. “Non hodie” is the prevailing reply. What’s so demoralizing is that those who ought to be in the fight for disability inclusion are not interested. How can this be? Well, actually, the matter is simple: “there will be time enough to make things right, but not today.” That this “non hodie” includes administrators charged with accessibility and inclusion and also the faculty who teach disability related subjects tells you how big a muscle ableism really is. But there’s another issue…

Fighting disability discrimination makes you unpopular. One may say that fighting for the full inclusion of all historically marginalized folks does so too. But with disability there’s one more turn of the wrench: very few people want to serve as serious allies. There’s almost no up side to being a real disability activist. If you want to be liked, stay away.

It’s not easy in “non hodie” land. One morning, tired, feeling low, I wrote the following draft of a poem:

This morning talking to Stephen’s head…

“You’ve endured so much,
Bullying, lifelong ableism…”

The architectures of wantonness…

Walking alone one sees Raskolnikov’s room…

Confession: having lived in some bitterness,
I fear the cruelties of human indifference
More than
Anything in this world…

**

“Non hodie” harms disabled human beings. It’s not merely that it puts accommodations and full inclusion into a murky future—the disabled who need these accommodations are left hanging, and in order to make this palatable, the ableists employ gaslighting. “You’re asking for accommodations in the wrong tone of voice.” “This isn’t the venue for this.” (As if there was a venue.) It’s the old, “you’re a malcontent, you cripple you” defense. Never do such people say, “wow, we’re violating the law and injuring real human beings.”

Another aspect of the gaslighting business is to have a gaslighting committee—usually it has a name like “Inclusion and Access for One and All” and it meets privately because its all about “non hodie” and self-congratulation. These committees never propose to fix the problems. They have cookies. They talk about inclusion. There’s just one thing. The folks on the committee don’t suffer from a lack of accommodations. In general they feel pretty good.

If you’re like me and you need accessible digital materials to teach and participate in the community and no one wants to fix this in real time—so that you’re “non hodied” half to death—you’re not included in the inclusion and access for one and all club. But you betcha they’ll gaslight you. You’re not fun to be around. And that’s the kicker. In the Neo-liberal university feeling good is the game.

When Helen Keller attended Radcliffe she observed that the experience was a “largely lonely triumph” and described how she was ignored by faculty, students, and staff. I’m in mind of this because I’m a blind professor who’s been campaigning for accessibility at Syracuse University for over a decade and I’ve been pretty thoroughly ignored.

I’ve been talking about Syracuse U’s  inaccessible websites, academic digital spaces, unreadable documents, HR inaccessibility, as well as our fickle adherence to the Americans with Disabilities act for twelve full years. After all this time I still can’t get readable documents or visit ADA compliant websites at SU. Let me be clear: I’ve spoken to every conceivable administrator from the very top to the mid-level compliance folks. I’ve called meetings with Deans and faculty. I’ve gotten nowhere. The Office of Diversity, Inclusion, Equity and Access says they have a plan but no one knows what it is. They have a committee on diversity and access but its not public.

There’s a mindset at Syracuse which works like this: “we’ll get to this inconvenient disability stuff in the future.” You should see the number of emails I have that say this when I complain for the umpteenth time about dealing with something I can’t read.

This “tomorrow-ism” doesn’t just affect digital environments. SU recently renovated the JMA Wireless Dome and re-opened the building to paying customers without putting in the required accessible seating. Recently a disabled undergraduate tried to attend a football game and discovered he couldn’t sit with his friends—a matter that’s required by law. When I’ve raised this issue I’ve been told, “we’re working on it”—which means we’ll get to it sometime but not today even though the law says it should be today.

Back to Helen Keller. I often feel as if I’m entirely alone in this advocacy role..I sense what Keller felt. Meanwhile I’ve talked until I’m blue in the face. There’s something at Syracuse, a state of mind, a baked in thing—it says the disabled are welcome to come here but don’t ask for accessibility and certainly don’t expect dignity.

**

Ableism is everywhere but it gets a special pass in higher ed. This is because many believe the apparently broken body has nothing to do with multiculturalism. The disabled are just medical problems.

In fact, when you “talk back” about this you’ll often be labeled as a malcontent. That’s how ableism works. I’ve experienced it multiple times.

Aren’t those cripples supposed to be in iron lungs somewhere out of sight?

Auditoriums everywhere have steps for the visiting reader. No ramps. Bring this up and once again you’re the malcontent.

Most universities like to talk about disability but without the disabled in the room.

In his excellent novel Middlesex Jeffrey Eugenides offers the following resplendent passage:

“Emotions, in my experience, aren’t covered by single words. I don’t believe in "sadness," "joy," or "regret." Maybe the best proof that the language is patriarchal is that it oversimplifies feeling. I’d like to have at my disposal complicated hybrid emotions, Germanic train-car constructions like, say, "the happiness that attends disaster." Or: "the disappointment of sleeping with one’s fantasy." I’d like to show how "intimations of mortality brought on by aging family members" connects with "the hatred of mirrors that begins in middle age." I’d like to have a word for "the sadness inspired by failing restaurants" as well as for "the excitement of getting a room with a minibar." I’ve never had the right words to describe my life, and now that I’ve entered my story, I need them more than ever. ”

There’s a hint of Mark Twain here—Twain who once said: “…mastery of the art and spirit of the Germanic language enables a man to travel all day in one sentence without changing cars.”
But emotion, which is necessarily complex should absolutely require hybrid expression. Any true account of feeling must be composed of elaboration. Disabled people know this and live it. “The disappointment of finding an auditorium is inaccessible, when the talk for the evening is about human rights.” “The misery of being asked by concert security to leave the theater because your wheelchair is blocking the aisle.” “The humiliation of being told we just filled that job when just this morning you were encouraged to come in for an interview and now they see you’re blind.” Compared to these, Eugenides hybrids are tame, even quaint.

Disability is both corporeal in-pleasure and un-pleasure, which is to say embodiment is diverse and dynamic, refined, lovely in the mind itself, and yet, whatever is not enabled becomes transitive and dislocating. There’s a simultaneity to ableist narrations of un-belonging and my crippled friends know the phenomenon quite well. Hybrid ableism reduces one’s affect, bleaches the mind, and it’s a tedious. "The loss that occurs when you’re told your protests for inclusion are tiresome to the normals."

**

Sometimes, like a tightrope walker who sees what he’s actually doing I think about being disabled. Blind, walking ordinary streets with a cane or dog I’m a spectacle. I mean this: disabled folks are mirrors in which the non-disabled observe their private, imagined selves. You know the phrase: “there but for the grace of God go I.” There are days when I say: “to Hell with going out.” Being stared at 24-7 is a drag. And it takes energy to ignore the stares. Yes. I know what you’re doing. I really do. News flash: the blind know when they’re being looked at.

Starting with the industrial revolution people had just enough disposable income to sit around and stare at each other at least one afternoon a week. As everyone who hails from a historically marginalized position knows, there’s a taxonomy to staring. The Victorians knew who and what went where and as cities became increasingly crowded the disabled were not much fun to look at. Worse, in a machine age they weren’t employable. Gone were the old cottage industries—sewing for the blind, blacksmithing for the deaf. Asylums were just the thing—out of sight, out of mind.

Back in 1990 when the Americans with Disabilities Act was signed into law I told one of my disabled friends: “What until they get a load of us!" The signature aspect of civil rights laws is increased visibility. For the first time in one hundred and fifty years the temporarily abled would have to look at the paralyzed, the blind, people who breathe through tubes, who flap to talk.

And then there are the complex emotions. A woman approaches me on East 61st St. in Manhattan. “My dog died,” she says. “Oh dear,” I say. I know about this. I do. She’s attracted by my guide dog and a switch has tripped in her grief gizmo and all she can think about is her loss. If I was walking with a white cane she wouldn’t have said a thing. “My poor dog died,” she says again, as if saying it once wasn’t sufficient to convey the awfulness of the story. And I’m frozen on the sidewalk. This isn’t the first time. For years strangers have invaded my happy thought bubble to share their dog death stories.

She starts to cry, this stranger, and she reaches out. “Can I touch your dog?” she asks, half weeping, half speaking. The process has taken just a few seconds. I’m reminded that four seconds can be immense. Satan fell from Heaven to Hell in just that time. I understand we’re having an unplanned and wholly unscripted spiritual moment. I can’t allow myself to freeze. A decision must be made. If you have a guide dog you’re not supposed to let strangers touch her (or even friends for that matter.) A working dog is doing just that. It’s not looking for love in all the wrong places. When you’re at home, voila, the harness comes off, and love is all the rage. But not on the sidewalk, not at a street crossing. You’re a team, the two of you, a survival unit. That’s just the way it is. “Yes,” I say, “you can touch my dog.”

And this woman, this strange weeping woman, drops to her knees, pushes her tear streaked face into my Labrador’s face, my surprised dog, and she actually moans.

There are so many corners to grief. So many lofty defeats inside each of us. So many exhaustions, facts, deserts, infinities, unexplored planets.

The non-existence of a dog has incited a vast, soft, exploration here, beside a row of parked delivery trucks outside the Hotel Pierre on a windy autumn day with dead leaves flying in circles like butterflies returned from the after life and she’s weeping into my dog’s thick fur.

“I’m sorry,” I say, “but we have to go now.” And I back up. Corky looks at me, as if to assess how far the grief has traveled. I think she wants to know if I’m OK.

I tell her to go forward. We move away. We enter the silent invasion of the future.

I think of her often, this woman, who loved her dog, who is drowning in the stone pool of her loss.

I think of the dismal routine of New York City or any city.

I think of the unselfish nature of chance encounters.

He found it difficult to tell the story of grass and the aspen
that shivered
and the names inside him.

Such a boyhood
Holding perfectly still in the green unspoken.
If the grass was democratic it was owing to unspeakable loneliness.

He lay low and still.
The times were plain.
He knew the names—
A favorite was the White Throated Sparrow
Called the Peabody Bird
Whose little song could break your heart.

This was in the final days before television
When some of us played dead
And really heard the bird songs.

Suppose that for just one day you are not trapped in habitual thinking. Let’s call it "leap day" and imagine that green forces rise through human beings until they finally see the earth as a collective heritage and our planet is no longer a real estate sandbox populated by covetous children. Yes and as John Lennon said, "and no religion too."

**

Meanwhile, suddenly everyone in America is lonely. I was always so. It never occurred to me there was anything different. As a boy I’d watch the other kids playing ball. They shouted quite a bit. And so they were lonely too. They were like flames vanishing inside red coals.

**

Cripple’s Lament

    “they say I'm alienated from reality
    as if I had the power to decide life”

                    —Sanni Purhonen

They say I’m blind and they swap my eyes
For jellyfish—or a coral in darkness

They say I’m nothing more than wind enraged

For cover, in polite society they say I’m like them
But they don’t invite me to the grand reunion

Its written someplace I’m a match end

When I was small I carried
A dead pocket watch

I thought one day I’ll have a clean reality

They say I’m a dry season

They change their minds: I’m a rumor of tears

They say I’m a poor infinity

I’m not afraid

**

Anyway, so on leap day the cripples no longer stand for, no longer represent abjection. And, as Transtromer once wrote, the houses walk sideways like crabs and the sun makes statues blink.

Outskirts, October

I would tell you with this poem
Which is a color
A melodramatic color
Like green leaves seen through tears
I’d tell you about the forest of blindness
With its twilit roots
But you must believe me
When I speak to you
Now and forever
You with your wide eyes
Which only signal danger
You who can’t imagine
Gliding sightlessly down a street
Are those people or birds
High up on the balconies
I’m passing between trees
I can be free
Not as you conceive it
But waving dry stalks
Hearing the air whistle

In the morning what with rain
Beating against the house
Rain falls inside me

Gently at first like a slim memory
Of blue nets by the sea

**

And if I cried out, what of that?

**

Hard rain at the windows
When I switch on the light
My shadow is more real
Than my body

**

Homeland you’re my sadness
Mother-ghost and father-ghost
Rain falling and falling

“Don’t try to please anyone,” I tell myself
“Stop trying so hard…”

**

Because I was an old man as a child
This is nothing new
The darkening season inside me
Truths draw nearer
Then as always they put out to sea…

I know, I know, there are those who call—
Two horses in particular
So that I, a blind man
Hear them like books read aloud.

Each has his voice
Each wants a touch.
I run my fingers gently
Down their long foreheads
And lightly across their noses.

What are we waiting for?
What are we going to do about it
In the meantime?

When I was a kid I learned a lot about stigma. Blind and a bit frail I was routinely bullied by children. But the adults were worse. From my earliest days in school to college disability meant I was a problem. One professor said I didn’t belong in his class if I couldn’t see. My story isn’t unique and believe it or not it endures for thousands even as I type these words.

By the time I was middle aged I thought I’d mastered the art of disablement. I’d learned to be proud of my blind life and I wrote a best selling book about the matter. I turned up frequently in the national media. I was a joyous disabled man. Moreover I was celebrating others. I thought I’d figured things out. If I was blind I also had value. That American thing.

I didn’t recognize that my triumph would be a limited thing. As I near the end of my sixties ageism is now upon me. Not long ago I posted something about disability discrimination on Facebook and a very young disabled person commented that old disabled people should “just go away”—a thing so nasty even the “Snark Fairy” would wash her mouth out with soap had she trespassed in the same way.

I puzzle over the matter. If you’ve a disability and you sneer at older cripples you might think you won’t be disabled when you grow older. In the field of disability studies we call this the “medical model” of disability. It’s the idea that doctors will cure you. And if they can’t fix you today then they’ll do it tomorrow. In this view the cripples only have value insofar as they can be fixed.

Maybe the callow cripples don’t believe this. Perhaps they think the old crips failed to make the world fully welcoming place. I remember telling my dad his generation caused the war in Viet Nam. I was 16 when I said it. This is a more likely scenario.

In his essay “Of Cripples” Montaigne wrote of gullibility, a curious word and I’ll return to it in a moment. Here is the master:

“Truth and lies are faced alike; their port, taste, and proceedings are the same, and we look upon them with the same eye. I find that we are not only remiss in defending ourselves from deceit, but that we seek and offer ourselves to be gulled; we love to entangle ourselves in vanity, as a thing conformable to our being.”

How I love the phrase “to be gulled”! Gull comes from Middle English “to swallow” or, and this is even more interesting, to pretend to swallow—one imagines its early usage—“he gulled me with the proffered poisoned pill for I swear he’d swallowed it…” Gull is from “gole” which means throat. Some lies will stick in your gullet.

Truth and lies are faced alike so long as they appear or sound profitable. Gull capitalizes on wish. Desire is conformable with our being—is our being—and Montaigne, like Shakespeare, understood the dread implication of modernity: we’d rather be lied to than question our yearnings.

Montaigne never uses the word cripple in his essay. It appears only in his title—and so implicitly his readers are the cripples, all of them. All pretend to be someone or something they are not— soldiers, prelates, merchants, scholars…everyone is alike in his falseness so long as his vanity is conformable with being.

Cripples were everywhere in Montainge’s time. The blind were still thought to be uneducable and were turned out to beg. While the juridical blinding of criminals had largely ceased in Europe by the 17th century blindness in particular, but crippled-ness generally still carried the symbolism of thievery. Moreover, there were false cripples, a story as old as humanity itself.

So maybe the young cripples don’t believe they’re disabled at all. Instead they’re gulled by a feature of contemporary identity politics, namely that if you insist that you’re remarkable you needn’t worry about anything else.