Author: stevekuusisto

Day breaks and the moon still hangs.

There’s a moon in my wrist and one in my eye.

I wish I could call you father. 

O the moon has run away.

See how small the houses are?

And bring all Heav’n before mine eyes. 

And may at last my weary age 

Find out the peaceful hermitage, 

Day…O father…

Well there it goes, my old fancy. I loved loving you.
Goodbye happy childhood sneakers. (P.F. Flyers)
Sayonara transistor radio with your “top forty” (you got me through the 7th grade when bullies pushed me down the stairs because I was blind.)
Toodle loo bell bottomed polyester lime colored jeans from the tenth grade that, you guessed it, got me pushed down stairs for being blind and fashion clueless.
Get the Hell Out “Catcher in the Rye” as I never liked you. Holden Caulfield is a dick.
Write if You Get Work, you ableist high school math teacher who made fun of my crossed eyes.
I could go on but won’t.
Just doing some spring cleaning.

**

When people say “Black Lives Matter” they’re affirming the goodness in Blackness. Those who bristle at the phrase (which is more than a phrase as its a cry of the heart) are asserting in no uncertain terms that oppressed people can’t proclaim “the good” for the word doesn’t belong to them. “All Lives Matter” means white people get to imagine goodness so Black people won’t have to bother anymore. Just so, the disabled say our lives are not second rate. We ask “where did you get that idea and why is it so important for you to cling to it?”

**

I’m power washing the radar forest of moldy abstractions.

**

Meanwhile:

What is it about being alone in a strange hotel that drives me always to think of my dead twin brother? He died shortly after we were born. I did not know him. Yet always in places of loneliness he seems to be with me as he was, early morning, before sunup in the Sheraton in Frankfurt, Germany. Was I tired? Did this make me sentimental? Did I have Madame Blavatsky on the brain? Is he always with me? Will genetic research prove it? Am I really living for two? I had wild dreams and woke and felt him. It’s a sensation known to everyone I think—that your private dead are there when you weren’t especially thinking of them. Even in a sterile, megalithic business hotel there was a mysterious and unanticipated shiver and I wondered how many other rumpled travelers were with me.

**

We speak as though fear and certainty are co-determined. Goodbye to that also.

I’ve been lucky to have had good friendships. I say lucky because I’m not an easy person to know. I’m opinionated, contrarian, suspicious of cant, disposed to a generalized distrust of earnestness. I don’t believe in “theory” when applied to literature or culture. Literary “theory” is opinion that hasn’t been subjected to serious rhetorical analysis. Derrida on animals is not worth the read. As I say, I’m not easy to know. I suspect I’d have gotten along well with the late Neil Postman.

When I was 15 and staying at a Key Biscayne resort with my father (who was on a business trip) I found myself alone in an elevator with Melvin Laird, Nixon’s secretary of defense. The year was 1970. My hero was John Lennon. I looked at Mel and said, “How’s your war going Mr. Laird? Are the body counts where you’d like them?” I was anorexic, stringy haired, and rebarbative. He glared and bolted when the doors opened.

I’m not easy to like. Unless you’re against war, dislike social hypocrisy and all the “isms” as we say.

But then again I like those who have learned to like themselves.

Which means knowing also who you are not.

Which means knowing what Bob Marley meant when he said:

“The truth is, everyone is going to hurt you. You just got to find the ones worth suffering for.”

When I was in the psych hospital at 15, anorexic, depressed about blindness I had a room mate. He was no older than I am now but I thought he was ancient. He was an immigrant from Eastern Europe and spoke almost no English. Anyway while I was busy starving myself to death he lay in his bed and moaned. Now and then he’d totter my way, lift his gown, and say: “Look at scar!”

**

How does it begin, the collapse of wish?
When you can’t ask how it ends.

**

Disability is everywhere once you learn to look for it. Elvis Presley had continuous high grade pain the last ten years of his life. Samuel Johnson was legally blind, suffered from seizures, and may well have had a variant of Tourette’s Syndrome. The people in my neighborhood are touched by disablement. Some show it. Others do not. Normalcy, the belief in it, the pressure to live it or else is the most destructive fiction on earth. What does it avail me to say so? And why do I keep saying it?

Because the defense of our planet depends on design justice and this in turn depends on defeating our addiction to normalcy as well as fossil fuels.

**

In her excellent book The Contours of Ableism (an elegant title I think) Fiona Kumari Campbell imagines the structural and attitudinal dispositions against the disabled as residing within a telos or set of illusions that maintain the non-disabled identity. When I write against disability discrimination and the privilege indexes of ableism I’m engaging in the work of all disabled activists by asserting the truth of the matter:

“Ableism refers to: a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.”

Excerpt From: “Contours of Ableism.” Apple Books.

So if there are so many disabled people around why does compulsory normalization still rule the roost? The contours of ableism are protean rather than strictly geometric.

Fiona Campbell writes:

“Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in law), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.”

Excerpt From: “Contours of Ableism.” Apple Books.

**

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 non-normals 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 the majority of bodies on the planet. Ableism also refrains from saying “maybe tomorrow.”

Blind like me you hate the song
Though you keep quiet.
Why ruin a party or twist sorrow
For effect like a shopper
Pressing his thumbs in cakes
Or the jeweler who tells you
Your watch is wrong?

Take “see” to mean release
And forgive the sighted.
Once in Venice
I walked the city
With my dog
Reading old doors
As if they were Braille
Though weather alone
Put the messages there
The words a dialect
Of accidents and rain.
I could feel my pulse
In my wrists.
I said half aloud
To no one in particular
I can’t love you
Any more than this.

“Some words are more important than others—I learned this, growing up in the Scriptorium. But it took me a long time to understand why.”

–Pip Williams. “The Dictionary of Lost Words.”

1.

Important is one of those malleable words like straw. It can be a plaything, a bed, a tube, a token of fate. Paired with language it means “far reaching” –one facet of discernment.

As a disabled child you learn a host of import-words.

2.

Thinking About Some Lines By Robert Bly:

“A man I knew could never say who he was.
You know people like that. When he met a monster,
He’d encourage the monster to talk about eating
But failed to say that he objected to being prey.”

(“Conversation with a Monster”)

I’ve had a disability all my life. Every now and then I meet a monster. What’s interesting about these moments is “the monster” is always a person of conditional authority–a bag man as they say in the Mafia. Once in awhile it’s a chief, but not often.

If you’re a veteran of disability advocacy and “self-advocacy” you’ve learned how to say “I object to being eaten” and then, by turns, you make yourself inedible.

It’s not easy out here in the forest.

3.

“But it took me a long time to understand why.”

There’s no clearer expression of what writing is about.

Do not neglect to say that you object to being devoured.

Advantage mine: eidetic blind childhood.

Aside: the great thing about monsters is that they lack logic. They’re so hungry. As an old Finnish cook book says: “Never pick mushrooms when you are hungry. Always use great care.”

4.

I once went to the home of Sergei Esenin in Tashkent. There was a Caruso record on the Victrola. One of Isadora Duncan’s scarves was framed behind glass on a wall. A book of poems lay open on a table. All three of these artists died tragically when young. The cramped apartment was a museum to arias I thought. Esenin wrote:

“I do believe in happiness!
The sun has not yet faded. Rays
Of sunrise like a book of prayers
Predict the happy news. Oh yes!
I do believe in happiness!”

Describing the ardor of dance Isadora Duncan wrote:

“Now I am going to reveal to you something which is very pure, a totally white thought. It is always in my heart; it blooms at each of my steps… The Dance is love, it is only love, it alone, and that is enough… I, then, it is amorously that I dance: to poems, to music but now I would like to no longer dance to anything but the rhythm of my soul.”

And then there’s Caruso singing “Donna non vidi mai” from Puccini’s “Manon Lescaut”:

“I have never seen a woman, such as this one!”, “To tell her “I love you”, my soul awakens to a new life.”

I pictured Duncan and Esenin whirling around the little room to the astonishingly beautiful aria sung by a tenor who was said to spin gold threads. And I thought of death at bay in that tiny room.

As I recall (but may have it wrong) Esenin’s book mark was a demitasse spoon.

5.

I played alone in an attic with a gramophone and Enrico Caruso stole into me. I sat beside the contraption with bandages on my eyes and listened to a man who’d been dead forty years, who’d come to America from Naples, the capitol of ghosts. Of course I didn’t know this. I knew a thrill instead which was the start of poetry, a door swinging open on the inner life.

Soon I had a game going. I’d play a record and while it played I’d finger the objects around me. The average opera record lasted three minutes. I’d play “three minute grope” while the tenor sang of heartbreak. I pushed my fingers into the fur of a raccoon coat. Touched an old spring loaded mouse trap, the mouse corpse long gone. I fingered an infant’s dress, inexplicably hanging from a nail. How many things could I touch in three minutes?

Import-words.

I was a poet before I was a blind boy. There, I’ve said it. Bullies can go to hell.

Now and then one recalls hiding under the sink, playing with a wooden top.

In the woods bluejays and crows had a game which I studied every chance I had—they pretended to substantial bones.

And meanwhile darkness surrounded the eaves of the house…

“TITHONUS: a member of the royal family of Troy, who married Eos, the goddess of dawn, and subsequently suffered an unusual fate. Eos loved Tithonus desperately, and could not bear the fact that, as a mortal, he was doomed to leave her when his time for death had come. So she petitioned the gods to grant Tithonus immortality; and her heartfelt request was granted. But Eos had forgotten to ask also for eternal youth. So Tithonus grew older and older, unable to die. His mind became deranged and he lost the power of speech. Eos kept him in a baby’s crib in a locked room. Some versions of the story have it that, out of mercy, Eos eventually transformed poor Tithonus into the chirping grasshopper.”
—HEINRICH DUBLER,
Enzyklopädie der griechischen Mythologie

1.

Dear cripple: see story above. It’s what’s for breakfast. One may also say it’s what’s for lunch and dinner and the occasional “after school snack” if you’re lucky enough to have one.

I digress. Tithonus isn’t as famous as Oedipus who guessed wrong in a game of pestilence trivia and oh yeah, murdered his father and married his mother. Everyone knows that Eddy blinded himself with Jocasta’s broach and wandered ever after. For the Greeks this was no metaphor. Thieves were routinely blinded and set loose on the roads. This is the “starve or wail” school of ancient disability. His blindness doesn’t mean he “failed to see” as most take it. It means he’s trying to be a good Greek advertisement for cultural thievery. Disability as metaphor is tricky. Contemporary blind folks are inheritors of this symbolism whether we like it or not.

Meantime, poor Tithonus, doomed to ever increasing layers of disablement, which means erasure and finally infantile sequestration. All for love. But it’s the grasshopper metamorphosis that really gets me.

Eos transforms her immortal invalid lover into the grasshopper because it will sing to her forever a clear and happy song. (So the myth goes.)

Old age forever, grasshopper forever.
Unable to speak, click your wings rhythmically.
Goddess gets to be reminded of youthful ardor in springtime.

Poor grasshoppers. Reduced to being a chorus of cheerful regrets.

And the moral of this tale?

Even today the cripples must pretend to cheer so you dear Eos won’t be down in the dumps.

Disabled all my days I’ve fought for sixty years just to be in the room, on the trolley, inside the china shop. Now with grey hair and wrinkles I’m not just blind, I’m an old fart. In a nation that celebrates “new” as its chief fetish ageism is widespread and lord knows it’s the subject of many great works of literature. (Tillie Olson and Hemingway wrote rather beautifully about it.)

So I’m an old blind fart. “Ding Dong!” “Who’s there?” “The Old Blind Fart!” “The Old Blind Fart Who?” “The One Who Ain’t in the Cemetery Yet!”

Ageism says the old have zero value. Since the disabled also have no value the OBF is doubly without value which sounds algebraic.

I’m the Boolean Blind Old Man.

Martin Amis: “And meanwhile time goes about its immemorial work of making everyone look and feel like shit.”

Five days a week for forty years Uncle History went to the Glum Works at the edge of civilization and dusted the apparatus. I knew him in his last years after he’d retired. He liked nothing better than to smoke his pipe in the dark on the old porch. He seldom spoke but one fine night when the fireflies were rose from the cinnamon ferns he said: “to know the present you have to know the past; but no one wants to know the present; so I quit.”