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“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.”

I was always going to be this man,
This set of lungs,
(The goddesses tell me
In dreams) this man
Who on grey mornings
Is loved
His falling caught.

One of the pleasures of reading is the discovery of a superior voice, one you’ve been waiting for even if you’d no idea you’d been anticipating it. In my case the aesthetic affirmation comes from Virgil Thomson whose polemical essays on music and everything else are original and beautifully “unlike” as the best writing should be. Consider this little nugget from his essay “Our Island Home, or What It Feels Like to be a Musician”:

“Among the great techniques, music is all by itself, an auditory thing, the only purely auditory thing there is. It is comprehensible only to persons who can remember sounds. Trained or untrained in the practice of the art, these persons are correctly called “musical.” And their common faculty gives them access to a secret civilization completely impenetrable by outsiders.

The professional caste that administers this civilization is proud, dogmatic, insular. It divides up the rest of the world into possible customers and non-customers, or rather into two kinds of customers, the music-employers and the music-consumers, beyond whom lies a no man’s land wherein dwells everyone else. In no man’s land takes place one’s private life with friends and lovers, relatives, neighbors. Here live your childhood playmates, your enemies of the classroom, the soldiers of your regiment, your chums, girl-friends, wives, throw-aways, and the horrid little family next door.”

This is, if not sidesplittingly funny, arresting enough and if you, like me, labor at a university (or any other professionalized but provincial arena) you know all about the dogmatics of professionals and the “everyone else community” or no man’s (or woman’s) land of private life.
If you don’t buy records or books, you are, according to the professional caste, just another prole. Reader: I went to the Iowa Writer’s Workshop and all I can say is this is spot on. As for the horrid little family next door it’s probably safe to say everybody hates them.

What’s delightful about Thomson is his candor about the no man’s land. Musicians and composers can make perfect art if they don’t tire of their trades. But then:

“Private life, on the other hand, is beset by a thousand insoluble crises, from unrequited love to colds in the head. Nobody, literally nobody, knows how to avoid any of them. The Christian religion itself can only counsel patience and long-suffering. It is like a nightmare of being forced to execute at sight a score much too difficult for one’s training on an instrument nobody knows how to tune and before a public that isn’t listening anyway.”

Mark Twain couldn’t say it better. (See Twain’s vision of heaven where no angel can play its instrument….)

That’s a delicious pronoun reference—“it is like a nightmare” points of course to private life but it picks up magnet-like, the almost witless patience of the church.

The poet in me loves the following:

“Everything the poet does is desperate and excessive. He eats like a pig; he starves like a professional beauty; he tramps; he bums; he gets arrested; he steals; he absconds; he blackmails; he dopes; he acquires every known vice and incurable disease, not the least common of which is solitary dipsomania.

All this after twenty-five, to be sure. Up to that age he is learning his art. There is available a certain amount of disinterested subsidy for expansive lyrical poetry, the poetry of adolescence and early manhood. But nobody can make a grown-up career out of a facility for lyrical expansiveness. That kind of effusion is too intense, too intermittent. The mature nervous system won’t stand it. At about twenty-six, the poets start looking around for some subject-matter outside themselves, something that will justify sustained execution while deploying to advantage all their linguistic virtuosity.”

Thank you Virgil Thomson. Thank you!

I have tried to make a grown up career out of a facility for lyrical expansiveness. As for solitary dipsomania, well….

There’s a catbird outside my window. He sounds lonesome. That’s the thing: all of creation is aching from solitude and horniness.

Meanwhile I guide my life by dreams, inefficient as always, prone to depression, occasionally pressing my forehead on the wet lawn early. 

Meanwhile here are several true statements about my life:

Once, afraid of the Russian police, I pressed my face against a birch tree and cried.

Once, I lit my shoe on fire in a fleabag hotel.

I sailed alone while blind through a thunderstorm.

Rode an elevator with Melvin Laird, told him I loved his “war thing.”

Was sneezed on by an elephant.

Hit a Chinese bell with a coin when none of my sighted friends could do it.

Had a soulful moment with a donkey in Galway.

Beat a French chess champion who overturned the board.

Held Enrico Caruso’s saddle shoes.

At its core “ableism” is discrimination or prejudice against the disabled. It’s steeped in the prevailing assumption that non-disabled bodies are inherently superior. I’ve lived with the “A Word” all my days and in my mid-sixties I see how I’ve been worn down by it. (Everything wears us down but ableism is so unrelenting and pervasive it’s like gravity.)

**

As Ibram X. Kendri puts it: “Americans have long been trained to see the deficiencies of people rather than policy. It’s a pretty easy mistake to make: People are in our faces. Policies are distant. We are particularly poor at seeing the policies lurking behind the struggles of people.”

**

I once told a group of disability studies professors that they weren’t sufficiently devoted to accessibility for the blind. Just about all of the 60 people in attendance had eyesight.

This view was not greeted with enthusiasm. Even within the disability community you’ll find closed gates.

**

All hail the eyes. If the blind can’t fully participate that’s “on them” for at least we allowed them in the room.

I think the blind aren’t fully welcome in the academy. Let me add, if you squawk about it you’ll be judged and not kindly. I’ve been told if my behavior was better I might get the access I need. Try that on, little fella!

**

Which brings me back to ableism which demotes you to little fella, little lady, kiddo, “special” and always gets away with it.

**

Recite to yourself a psalm or sonnet. Name all the players on the 1969 New York Mets. Just don’t do what I’ve done when my spirit has failed—don’t tell the poor sods what cattle they are—and trust me, as a crippled activist you’ll face colluders, quislings, prevaricators, and worse, and I’m merely saying, don’t let your outrage with the boring quotidian be your first move. I tell you I’ve made that mistake. As a blind child I was told I didn’t belong so often, so routinely, by so many boors that my half-sainted skin is pocked with the scars of custom and you better believe this is why I think highly of myself, for as of today I’ve never hit anyone, never kicked a dog, though I’ve slobbered and spit when confronted by meagre conventions and the unwritten rules of ableism. Yes! Think highly of yourself! Try like hell not to hate the unpleasant and despicable apparatchiks. When all else fails, tell them off. But don’t do it just because you’re stupefied.

Here concludes the sermon. Except for this. Disabled lives are in peril all over the world. Anger beats boredom but it seldom promotes effective change. Wits do. Crawling up the Capitol’s steps will do it. Standing up for those who don’t have voices or opportunities will always do it. But never contempt. Please don’t be like me when I’m weak and in a state of high offense. And then, stay unintimidated.

I’ve been writing this blog for quite a long time now. Blogging is “so last decade” and is the equivalent (if you’ll allow me a mixed metaphor) of black socks with shorts. It’s a dad thing.

All the sharp online communicators have moved to podcasting or video.

And here I am plodding along in the slow lane.

I should say that I’ve tried to master the software of podcasting but it’s not blind friendly. I’m not saying it can’t be done, but it’s very hard. Garage Band, Sound Cloud and the like are extremely visual and if you use a screen reading program as I do it’s virtually impossible.

Still in the slow lane.

Now since no one gets paid much if anything to “blog” why do it?

For me the answer lies in the outlier worlds of disability.

**

From Aristophanes onward the imaginative life has been synonymous with dissatisfaction, contrarianism, and what for lack of a better term I’ll call productive distemper.

When I got my first guide dog I discovered that moving through public spaces required this very quality.

My dog and I were contrary by our existences. Riding the 4 train in New York City a burly man said: “I don’t know why they let you service dog people go everywhere. The fucking subway should be a dog free zone!”

He might have been speaking the thoughts of many for all I knew. And for all I knew he may have been bitten by a dog when he was a child. (It’s a game I have, imagining the adults I encounter, all wearing signs that declare their childhood traumas—in place of name badges at cocktail parties.)

And so I looked at burly man and said: “When I’m elected President everyone gets his or her own subway.” Then added: “My dog doesn’t like riding with you either.”

Of course I knew my dog didn’t care about burly man. But if we were representative of others’ dissatisfactions, then we were entitled to volley back. And over time I came to call this ‘productive distemper”.

Aristophanes said: “Youth ages, immaturity is outgrown, ignorance can be educated, and drunkenness sobered, but stupid lasts forever.”

“Corky,” I said, “stupid lasts forever.”

**

So as I say, I’ve been blogging for years and while I write about human rights issues broadly, I’m often pushed back to blindness. Pushed back is the right phrase for as any person with a disability will tell you, there are too many moments when your physical difference is managed poorly by the temporarily abled people you work with or meet. Once I was lifted by three men while I was vacationing in Jamaica. They grabbed me and hoisted me into the air. All of them were well meaning: their goal was to place me securely in a boat. The blind man needs help. We’ll give it to him. I smiled. “Its a cultural thing,” I told myself. Their intentions were good. The trouble is that lots of well meaning actions by non-disabled people are simultaneously demeaning. Those helpful beach guys saw my blindness as something akin to what I’ve come to call “trouble luggage” which is the ultimate pejorative objectification of disability. My friends who travel with wheelchairs know all about this, especially when they’re flying. The airlines view disability (all disability) as trouble luggage. It’s rare for a disabled person to have a good day when traveling. You can joke if you like by saying its rare for anyone to have a good day when traveling but trust me, the demeaning and objectifying experiences of disabled passengers are so consistent and so humiliating they far outstrip the lukewarm unhappiness of non-disabled travelers.

Boarding a plane not long ago with my guide dog by my side, the flight attendant said: “That dog doesn’t have a blue blanket, it can’t come on the plane.”

I’ve flown (quite literally) hundreds of thousands of miles with my guide dogs. I’ve heard lots of oddball things from travel professionals. (Guide dogs are allowed on all public transportation). But this was the first time I’d been hit with the “blue blanket” “trouble luggage” scenario. And those who know me know I’m seldom speechless but standing in the doorway of the airplane I was momentarily flummoxed.

For one thing, “blue blanket” (for me) brings to mind the famous and hilarious scene in Mel Brooks’ classic comedy film “The Producers” where Gene Wilder, playing the role of Leo Bloom a downtrodden accountant, finds himself swept up in a nefarious and illegal money making scheme in the company of Zero Mostel (playing the role of Max Bialystok, a corrupt Broadway producer). Bloome has a fetish object, a childhood remnant, a blue blanket, which he pulls from his suit-coat pocket and rubs against his face when he feels that Bialystok is bullying him. Bialystok steals the blanket which of course produces comic hysteria from Bloom. “My blanket, my blanket, give me my blanket…” Etc. And so the flight attendant was telling me I couldn’t get on the plane because my dog didn’t have a blue blanket.

“Guide dogs don’t have blue blankets,” I said. “I’m not sure what you’re talking about.”
“Oh no,” she said. “That dog has to have a blue blanket or it cant’ come on the plane.”
“Ah,” I said. “You know when guide dogs are in training as puppies they wear blue blankets, maybe you’re thinking of that?”
“I don’t know,” she said. “But you can’t come on the plane.”
Civil rights veterans know this trick. You just sit down. I sat in the nearest seat. I tucked my dog under my feet.
“You’ll have to get a supervisor,” I said.
She stormed off the plane and up the jetway. Civilization was stopped. People with oversized suitcases began piling onto the aircraft without a flight attendant. But I was the supreme piece of trouble luggage.

And of course the attendant reappeared and said nothing more to me. Someone told her it was OK. Her silence suggested she’d been dressed down or patronized. That’s the thing: disability “trouble luggage” always leads to abjection and misunderstanding. The commuter airline had not trained its flight attendants. I needed Leo Bloom’s blanket.
I’m fond of pointing out blindness is a low incidence disability. It’s highly likely most sighted people (which is to say, most people) won’t come into contact with a blind person. If you’re blind and you travel you must always reflect on your ambassadorship—you’re the official representative of the country of blindness, yes you, standing right there in a jetway with your dog and your backpack loaded with dog food and an iPad.
So I come back to blindness all the time. The days won’t let me forget it. At a cocktail party a woman says to my wife, who is not blind, “Oh you dress him so well.” Try enjoying your foie gras after that.

“It takes a busload of faith to get by,” Lou Reed said. What will the next moments bring? How will I maintain my equanimity? Everyone has to ask these questions but blindness intensifies their frequency.

“What will he be having?” says the waitress, looking directly at my wife.

So I blog.