Playing Chicken, Driving a Motor Bike, Pretending to See

My thoughts while waiting to take my first guide dog walk.

Feigning sight was always a chicken game. Two drivers racing toward each other. Who will flinch first? Will anyone flinch? If neither flinches, both perish. If only one flinches, he’s a coward.

While pretending to see, reality was my opposing driver. Would he quiver? Would “the real” step aside for my blind plungings? I counted on this. Once, on a study abroad trip to the Greek islands, I rented a motor bike because my college pals were doing it. Some of them knew I couldn’t see, or at least I imagined they knew, for I though paraded around without asking for help, I was halting and clumsy. But it was the late 70’s: no one had any language for disability and hey, I was an unlikely guy and so were we all. We rented our motorbikes on the island of Santorini a dark crescent that rises steeply from the sea—it’s all that remains of a larger island that disappeared in a volcanic flash in the 16th century BCE.

We rented the motorbikes in Fira from a man who was listening to a football match on his radio and who hardly noticed us. He didn’t need to see our licenses, only required a credit card and we were off. I followed a student named Roger who wore a red windbreaker. If I stayed very close I could track his jacket with my left eye. I saw his rectangle of red bobbing up and down. It was the flag in a bullfight. The sharp curves and severe hills of Santorini wound like a lethal high speed ribbon under my wheels. I swayed and dipped but I held that red flag in view, or imagined I did, and unlike my classmates, I saw nothing of the panoramic ocean or cliffside ruins, or pelicans crossing the road on foot.

No one plays chicken because he feels good. Nor is it a game for anarchists who believe in human decency. It’s for stripling losers. In political science its called brinksmanship.

It’s the Cuban Missile Crisis. When you play chicken with your disability you’re trying desperately to convince yourself you don’t have a weak hand. And you have little affection for others. Who are they, anyway?

No one forces you to play it. You simply do it because it’s what you know. You learned it when you were knee high. In grade school I received several lessons:

  1. Sighted children shared nothing.
  2. No one played fair.
  3. Hitting people was easy and the blind kid was a perfect target.
  4. Hiding things from the blind child was sport.
  5. Disarranging the blind kid’s possessions was also rather fun.
  6. See above.
  7. Sorry is absurd.
  8. Steal soap from the blind kid.
  9. Push him in the toilet whenever you have a chance.
  10. Always take the blind kid’s lunch.

Is it too easy to say I feigned sightedness and became a daredevil because of kindergarten? Maybe. But when you add churlish school administrators and drunken parents you discover wildness and deflection are a satisfying dish. Someone once asked Leadbelly, the King of the 12 String Guitar, how he played the thing. “You gotta keep something moving all the time,” he said. That’s how you play sighted man chicken when you can’t see. The movement is wild and fresh and sweetly terrifying.

 

Notes for the Afterlife Sauna

Oh Wallace Stevens I love you. You are a demi tasss cup with a chipped gold rim. You are the blind man’s imagined peacock, and by God I heard a real one once—it sounded like a human baby being torn apart, though I cannot confirm this sentiment.

Oh Muriel Rukeyser I love you. You pulled from ether Penelope’s unraveled loomings and you were funny. God yes.

Oh Auden.

Oh Ted Berrigan…

Oh Alice Notley…

Oh Herkimer Puccini (my father’s nickname for me, growing up…)

**

The rich have “panic rooms” which are like bank vaults. They go right in, like Hitler to his bunker.

The poor have “panic shoes” which are like those puffy red envelopes from bill collectors.

**

“Elämä on ihmiselle annettu,

jotta hän tarkoin harkitsisi,

missä asennossa tahtoo olla kuollut…”

Life was given to man

so he may consider

what position he’ll assume when dead…

Pentti Saarikoski

**

Oh Pentti…

**

Oh Elizabeth Bishop:

“Think of the long trip home.

Should we have stayed at home and thought of here?

Where should we be today?

Is it right to be watching strangers in a play

in this strangest of theatres?

What childishness is it that while there’s a breath of life

in our bodies, we are determined to rush

to see the sun the other way around?

The tiniest green hummingbird in the world?

To stare at some inexplicable old stonework,

inexplicable and impenetrable,

at any view,

instantly seen and always, always delightful?

Oh, must we dream our dreams

and have them, too?

And have we room

for one more folded sunset, still quite warm?”

**

Oh Plato, I went down to the Pereus. Walked among the yachts. Saw rich men drinking retsina. Even at twenty two I could see they didn’t have much in the way life.

Plato I loved you that year. And I loved you for this:

“The soul takes nothing with her to the next world but her education and her culture. At the beginning of the journey to the next world, one’s education and culture can either provide the greatest assistance, or else act as the greatest burden, to the person who has just died.”

I hope you and Saarikoski are in the great afterlife sauna…with whisks made from birch leaves…

 

Disability, the Academy, and Gestural Violence

In his essay “How Can We Explain Violence Against Disabled People?” Dan Goodley, Professor of Psychology and Disability Studies at the University of Sheffield argues that offenses against the disabled have their origins in ableist cultural practices. He points to the circulating practices of ableism:

The cultural theorist Slavoj Žižek, in his 2008 book Violence suggests while it is important to document and address all forms of violence we should also be prepared to move back from the obvious signals of violence to ‘perceive the contours of the background which generates such outbursts’. Žižek urges us to consider the ways in which the whole panoply of violent acts against (disabled) people can only be understood by reflecting on the wider circulating practices of dominant (disablist) culture.

 

Those of us who live with the daily reality of disability know first hand the meanings of “the wider circulating practices of dominant (disableist) culture” as its circulations are a hydra headed affair, a monster with many heads, and it generally appears no matter what state of mind we may be in.

Goodley adds:

His ( Žižek’s) work encourages us to consider the normal, everyday, mundane, accepted workings of societal institutions and community practices as being inherently violent against those that, in some way or another, threaten their everyday workings and practices. Other forms of violence emerge. One of these is what is Žižek terms systemic violence; which he understands as the often catastrophic consequences of the smooth functioning of our economic and political systems. ‘We’re talking here’ he says, ‘of the violence inherent in a system: not only of direct physical violence, but also the more subtle forms of coercion that sustain relations of domination: including the threat of violence’ (Žižek, 2008: 1-8). This kind of violence was apparent in the lives of the disabled children and families that we spoke to who told us of disabled children being manhandled in Christmas performances by staff in order to behave and not disrupt the show. This violence is to be found when a child’s hand are pulled away from a canvas because their messy painting methods were at odds with the classroom task that had been set in tune with the requirements of a lesson in-keeping with the National Curriculum.  Similarly, we find the pressures of the system in the numerous parental stories of stress, tears and near breakdown explained by the endless need to fight the school system to recognize and include their children. These narratives of systemic violence might not be as hard hitting as the earlier accounts of physical and mental acts of abuse. They are often not as newsworthy. They are, however, as brutal and potentially damaging as any form of disablist violence because they say something profound about the wider disablist culture in which we live.

 

The wider disablist culture is the thing I live, have lived, and most likely, despite advancements in the law, shall continue to live. Because I’m blind I often suppose when I’m in a meeting with sighted people (and here I must insert sighted people to whom I am beseeching an accommodation) that they are vexed by a cathectic thing, as blindness bears to the sighted both psychological discomfort and a concomitant demand for creativity. Where the latter is concerned we recognize how fickle the gods of imagination are and have always been. As to the former, nothing scares sighted people more than the prospect of sightlessness. Ipse dixit. Most sighted people, even progressive ones, won’t readily admit this. But the cue cards of the sighted often read as follows: “I’m a good person; didn’t I let you enter my house with your guide dog?”; “I’m a good person; didn’t I admit you to my university class in hermeneutics—and now you want accessible books? I’m a good person but you’re straining my limits. My goodness is my bond, surely, but I’m not required to imagine how I might work with you.”

These are micro-aggressions routinely experienced by the blind. In turn there is the violence of  playgrounds (which we survived, though not without aspects of PTSD) and then there are the manifold aggressions of sighted teachers and administrators, shop keepers, business figures, politicians, Uber drivers, airline personnel, stray zealots, and the creeps one meets on the riverboat as Mark Twain would say. (One finds every sort on the river boat…)

At its very core blindness represents to the sighted a catastrophic obstacle to the smooth running of economic and political systems. Throughout my entire professional life (which has, so far, spanned faculty and administrative assignments at 4 colleges) I’ve absorbed lots of callous and infantilizing rhetoric when requesting accommodations. We live, it seems, forever on the playgrounds of childhood if we’ve a disability and propose to live professional lives.

Sometimes I picture academic workplaces as schoolyard swing sets. Twenty years ago there was a popular self-help book by Robert Fulghum called “All I Really Need to Know I Learned in Kindergarten”.  When it hit the stores I took its title ironically—through a disability lens if you will. Fulghum’s conceit was that early childhood classroom experiences offer us a Dale Carnegie practicality, a spit and polish straightforwardness which, when reimagined, leads you to adult triumph. Here is Fulghum’s kindergarten règles de la vie:

  1. Share everything.
  2. Play fair.
  3. Don’t hit people.
  4. Put things back where you found them.
  5. CLEAN UP YOUR OWN MESS.
  6. Don’t take things that aren’t yours.
  7. Say you’re SORRY when you HURT somebody.
  8. Wash your hands before you eat.
  9. Flush.
  10. Warm cookies and cold milk are good for you.
  11. Live a balanced life – learn some and drink some and draw some and paint some and sing and dance and play and work everyday some.
  12. Take a nap every afternoon.
  13. When you go out into the world, watch out for traffic, hold hands, and stick together.
  14. Be aware of wonder. Remember the little seed in the Styrofoam cup: The roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
  15. Goldfish and hamster and white mice and even the little seed in the Styrofoam cup – they all die. So do we.
  16. And then remember the Dick-and-Jane books and the first word you learned – the biggest word of all – LOOK.”

Aside from obvious inaccuracies (that we don’t know why plants grow, or that cookies are good for you) what’s always interested me about the list is its core assumption that all kids are the same. Here’s what I learned most days as a blind child in elementary school:

  1. Sighted children shared nothing.
  2. No one played fair.
  3. Hitting people was easy and the blind kid was a perfect target.
  4. Hiding things from the blind child was sport.
  5. Disarranging the blind kid’s possessions was also rather fun.
  6. See above.
  7. Sorry is absurd.
  8. Steal soap from the blind kid.
  9. Push him in the toilet whenever you have a chance.
  10. Always take the blind kid’s lunch.
  11. You get the picture…

Back to Slavoj Žižek. Ableism and dominance. ‘We’re talking here of the violence inherent in a system: not only of direct physical violence, but also the more subtle forms of coercion that sustain relations of domination: including the threat of violence.” Blind people are largely familiar with relations of domination, and for my purpose here, I will rename the threat of violence in the academic workplace as “gestural violence”—certainly the blind can hear body language. Umbrage needs no visible hand gestures. Annoyance, spoken, does not require facial features.

Gestural violence is deterministic; it’s predicated by inconvenience—a blind graduate student needs multiple streams of accessible information if she’s to succeed. The Dean or Associate Dean finds this request threatening for she knows nothing about the ways and means of delivering accessible information. It’s vexatious, the request, the ignoble “ask” because the system is incommodious. For over forty years American colleges have pursued a rehabilitation model of disability that relies on the creation and maintenance of offices of disability services. These are generally designed for undergraduate students. They are geared to make accommodations for students according to narrow expectations. Extra time for tests; a book printed in Braille; a note taker perhaps. These are good things, necessary, and altogether outdated in the age of information technology when students are expected to work through multiple online information systems to complete assignments.

Gestural violence happens in the academy whenever a disabled employee or student asks for an accommodation the school doesn’t know how to deliver, or fears will be expensive.  G.V. is always the first response when non disabled administrators or faculty are faced with bewildering disability related challenges. It works by deflection. It works by assumptions. If you were a better disabled person you wouldn’t be bothering me. If you were less blind you’d be easier to deal with. If only you had a better attitude about life. Gestural violence is automatic. It is invariably disgraceful, shockingly unacceptable, and yet, tied to dominance, it is widespread within higher education.

Often a signature of disablist G.V. is that the abused individual imagines he has some control over the situation—the disabled person may even try to relieve his abuser, a scenario familiar to those who work at Women’s Resource Centers. I don’t know how many times I’ve endeavored to make disablist colleagues feel some uplift while discussing ADA violations—the newly renovated building that has no accessible restrooms; the broken wheelchair lift; the philosophy conference on disability that was wholly inaccessible; the problems with course management software; systemic breakdowns in the delivery of basic services—always trying for agreement, making my little jokes: “It’s not the Cuban missile crisis…” or the like. But this seldom works. Because deflection and deferral are the mainstays of systemic ableism, the cripple must be persistent. Week after week he bothers the system; year after year. Ableists then call the beseecher a crank, a malcontent, a man with a bad attitude.

Certainly these things have been said about me at every institution of higher education I’ve been at. The blind professor doesn’t have the proper attitude. He’s a nuisance. His very presence asks too much of us. “I’m sorry Steve, but I didn’t have time to make an accessible copy of this.” “I thought this accessibility problem was solved a long time ago, gee…”

 

 

 

 

 

 

True Love on Christmas Eve

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Photo of Bertrand Russell

 

“My conclusion is that there is no reason to believe any of the dogmas of traditional theology and, further, that there is no reason to wish that they were true. Man, in so far as he is not subject to natural forces, is free to work out his own destiny. The responsibility is his, and so is the opportunity.”

The lines are Bertrand Russell’s and I’ve been in mind of them for many days. I suppose like most people I endeavor to affirm the rightness of human consciousness by which I mean the hopeful, shy, steady properties of optimism. Obviously it’s a steep task, especially if you’re subject to depression as I often am, and certainly the steepness I speak of is tipped all the more by the suffering and dying we witness–have witnessed–know that we will witness. What I know about hope may feel insufficient hourly, but I know my version of the good is borne out by history and not by the ideas of destiny that are peddled by traditional theology.

Not long ago I saw a minister on TV telling his flock that unless they admitted and re-admitted their fallen condition and gave everything they had to Jesus they would be going to Hell. I found myself talking to the screen saying essentially, “the trees don’t go to hell, the cats and dogs don’t go, the brute whales don’t go, in fact, dear, you’ve reserved only one kind of life for eternal damnation and you’ve done it with sheer inelegance.” That’s what I dislike most about organized religion–it’s sheer inelegance, its lack of grace, and the baldness of its salvation narrative. Religion, as defined by preachers is too ugly for nature and too ugly for god.

I’m in mind of this today both because it’s Christmas Eve and because I’ve been reading poetry about love. There’s more love in poetry and the privacies of hope than in all the churches. This has always true but I felt like writing it down.

Bertrand Russell again:

“One is often told that it is a very wrong thing to attack religion, because religion makes men virtuous. So I am told; I have not noticed it.”

Here’s Elizabeth Barrett Browning:

The Face of All the World (Sonnet 7)

by Elizabeth Barrett Browning

The face of all the world is changed, I think,

Since first I heard the footsteps of thy soul

Move still, oh, still, beside me, as they stole

Betwixt me and the dreadful outer brink

Of obvious death, where I, who thought to sink,

Was caught up into love, and taught the whole

Of life in a new rhythm. The cup of dole

God gave for baptism, I am fain to drink,

And praise its sweetness, Sweet, with thee anear.

The names of country, heaven, are changed away

For where thou art or shalt be, there or here;

And this… this lute and song… loved yesterday,

(The singing angels know) are only dear,

Because thy name moves right in what they say.

Hang it all

Hang it all Robert Browning, but best skedaddle for now. Here come the perfessors.

Triflers beware! The perfessors are here:
Punctilious, mindful, on the move,

They’ll flush you out, invest your reveries,
Or close your brown studies. It’s you they’ve watched

Woolgathering, or nonchalant, improvident- tant pis!
Micawbers, slackers, skimmers, here’s your match,

The perfessors have arrived: the robed Savonarolas!
Leap in the dark, grope or guess, send up a trial balloon,

Rummage, ransack, winnow or appraise–
Inquisitors will grill you: mooncalf, booby, lout, buffoon.

It’s time for gumption, prudence, brains and mother wit:
A bluestocking’s wrangle, a sine qua non;

Alas, poor duffers, bookless, smattering, you invent
A limerick, an Irish muddle, clearly heretic.

O the perfessors are here: praise Mentor!
They swoop through the long schoolroom,

Vertiginous, oracular, confirmatory, O rodomontade!

Soul Maker, Blind.

painting1

(Image, Jan Fyt’s oil on canvas, “Big Dog, Dwarf, and Boy”

When I was fourteen years old and struggling with vision loss, my mother, who was by then a heavy drinker met me at the door of our house. I was returning from junior high school, hoping desperately to find safety after seven hours of bullying. All I wanted was my own room. I could picture in my mind’s eye my cave with its short wave radio. Nowadays I know the mind’s eye is the work of the soul but I didn’t know it then. I only knew retreat.

My mother clutched a burning sofa cushion. “I don’t know how I did it,” she said. “get out of my way!”

She ran across our suburban lawn with the blazing thing held at arm’s length, and for some reason she wouldn’t drop it. She staggered from place to place until flames singed her hair and then she flung the cushion into a neighbor’s hedge where it extinguished itself but continued smoldering, sending up smoke signals.

That wasn’t the day my soul went dormant but it was a gradient point on the arc of withdrawal. As a disabled teen I was learning there were no safe places. We find, by necessity, locations where our souls can retreat, and after practice, we learn to take these guarded, hermetic spaces wherever we go.

In 1969 my job was to endure by stamina. Be blind, but don’t be blind, be something sort of blind, but not really blind blind. Be some kind of defective sighted person, but not really defective, just moderately less broken. Or whatever.

Blindness became a tortoise like affair. My blind soul held its breath in a shell.

**

My mother was always wasted by mid afternoon. She had several types of drunkenness as most alcoholics do. There was the giddy vaporous intoxication born of desperate merriment—she’d dance alone to music only she could hear, quite literally. Then there was the drunkenness driven by what I came to call her misery gauge—I pictured a glass indicator on a submarine—pressure outside was building. She also partook of vengeful drinking, the kind Richard Nixon did in his last days as President, a mumbling paranoid imbibing. She was brilliant, darkly ingrown, beautiful, and damaged in a hundred ways.

If I was lucky, she’d be asleep by 4 pm, stretched out on the living room sofa with curtains drawn, highball glass on the floor, one shoe off and one shoe on. I’d go straight for my room and my radio, door locked, then strip off my torn shirt—for daily bullying always meant the death of a shirt. I’d lie on the floor and listen to short wave radio. There was a station from Belgium that played Duke Ellington. For some reason, though everyone I knew listened to the Stones or Beatles, something in Ellington felt right to me—complex, buoyant, I didn’t know what to call it, but I could easily luxuriate in it.

 

**

Because my father was an academic, and apparently less guarded than my mother, who never talked about my eyes, he told a friend just how little I could see. He came home one night with a cardboard box containing a dozen sealed mason jars—his colleague was a scientist of some kind, and the jars held dark specimens floating in formaldehyde. The idea was that I could hold the jars close to my one good eye and see things.

Alone in my room in a circle of lamp light, I held the first jar close to my face. A white human fetus floated in a viscous brown liquid, trailing its umbilical cord. The jar was so near my left eye my eyelashes brushed the glass, and owing to my unsteady hands the fetus turned gently, that gentleness of the drowned, until its face was straight opposite my cornea. It had grey veins across its temples and a determined frown. I thrust the jar back in the box. I wanted to go downstairs and tell my father to take it away but he was fighting with my mother and I shoved the whole collection into the back of my closet behind a heap of shoes.

After that, alone at night, I’d lie in bed knowing the fetus was in my closet, suspended in its soup with its little face all closed up.

**

I wanted to grow my hair long like the Beatles guitarist George Harrison. In school I was a mark. Boys stole my glasses, pushed me into walls and lockers, shoved me on the stairs, ripped my clothing, all because I was the blind kid and you know, the deviant is the oldest fair game of all, a thing I could feel all the way down to my spleen. Long hair would save me. Long hair is a feature of the soul but I didn’t know it exactly. I knew it with inexactitude, which was the way I knew everything. Hair would save me. Duke Ellington would save me. Maybe someone from Belgium would save me.

My mother was painfully drunk when I came down from my room after hours alone with the Belgians. Before I knew it, she had me by the hair and was dragging me across the kitchen.

“You look like a fairy,” she said.

“What’s a fairy?” I asked. I had no idea.

“A faggot!” she said.

I didn’t really know what this meant either but she was blowing whiskey vapors and clutching my hair and poking at my skull with scissors.

I pushed her. She fell backwards still waving her shears and fell into a large plastic trash can. Because she was a drunk and hated domesticity she long ago had decided a full sized garbage can was perfect for the kitchen, you didn’t have to empty it daily, and of course it stank and now she was falling into it.

I should say it’s quite possible she’d have fallen into the trash without my help as she was always unsteady on her feet, even when sober, but especially when smashed.

The can tipped over as she fell backwards and the lid popped off and together she and the can had a rendezvous and there she was, covered with mire and ashes and waving the pruning scissors and howling. She’d broken her elbow. I was the inciting factor. In the weeks that followed I was the one who broke her elbow.

It was my soul that did it. Soul clap your hands. Grow your hair. Know the touch of unfriendly hands.

**

In my room I listened to talking books from the Library of Congress. Those were the days when the books were on long playing records. I had a government issued gramophone, a squat, grey, heavy machine that played the disks at slow speeds.

I played Ray Bradbury’s Fahrenheit 451 that year. I was in love with Bradbury. He is of course a good person to love with you’re 14.

From the gravely recording I heard:

“Everyone must leave something behind when he dies . . . Something your hand touched some way so your soul has somewhere to go when you die . . . It doesn’t matter what you do, so long as you change something from the way it was before you touched it into something that’s like you after you take your hands away.”

After hearing this I thought a great deal about touch and the inner life. Again, I didn’t know what to call it.

What would be like me?

What thing would I touch and impart myself into?

What could I change by my very touch?

One mustn’t think for a moment that teenagers don’t know these things.

**

If you are lucky you have a dog. I had a golden retriever named Honey who knew me. If you’re lucky you know the dog knows you.

She knew me. I walked her in the unbearable sunlight that hurt my eyes. I called her into my room where she lay beside me as I read my recorded books. She sailed around the world as I read Moby Dick.

She was with me as I read Gulliver’s Travels.

I held her dear face in my hands.

What thing would I touch and impart myself into?

Dogs came to us long ago, and they answered this question long ago. And the soul knew this long ago.

In the Gemäldesammlung in Dresden, Germany,  Jan Fyt’s painting “Big Dog, Dwarf, and Boy” stands as time honored testimony to the superior empathy of dogs. The boy in the painting is not crippled. He even looks a little smug. He’s wealthy. He owns the dog. And the dog, who is large both inside and out, has locked eyes with the dwarf.

If you are lucky. Lucky with dogs. They will know. You will also.

I was raised by dogs.

**

My mother drank herself to death. It took her a long time.

It took her six dogs as I like to say.

I touched every one of them.

And when, as a grown man, I got my first guide dog, I knew just where to put my trembling fingers, in a tiny place, just behind her ear.

Soul meets soul and back again.

Back and back behind the ear.

A softness like no other.

 

 

 

Writing with a Dog Under my Feet

Old post, here reposted, written in Iowa City…

stevekuusisto's avatarPlanet of the Blind

“The sub-cartesian people will drive you nuts

But hooray for those who love their mutts…”

–Ogg of Ancient Schenectady

In the initial position I should admit to being depressed. I have always been depressed. I take medication for it. I work assiduously to overcome the declivities and swells of self-contempt and I ignore the little brother named exhaustion. Some mornings I climb a ladder and climb back down with nothing to show. On occasion I can scarcely leave my house.

The dog under my feet knows all this. She knows my dreams are tuned like the caffeinated mind of Stravinsky. She sees that I am dropping spoons for the music. She gives me good news: no news; nonsense; deferral; not giving a shit…

The best news is the dog’s entire disposition. She accepts you. Doesn’t care that you are merely a botched hominid.

Outside the window in a corn field…

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The Portal

I lie down in wet leaves because I believe in empathy, my dead are there, my brother…

Maple leaves, waft of cinnamon, hint of whiskey….

 

In America you get what you pay for, but spending time on the ground costs nothing.

Here in Syracuse, winter rain, three dead apples hanging in my backyard tree

 

I picture the bowl of blood and milk I’ll hand to William, my twin who died at birth

As I too slip under grass, heart so full I might just live again…

 

 

Nobody Loves You When You’re Blind and Need Books

“Nobody loves you when you’re down and out” John Lennon sang once. That song was on the charts in 1974 when I was a sophomore in college. Though it’s not one of Lennon’s best songs it did make sense to me as a blind student trying to get an education. My blindness was both the “down” and the “out” back then, and it’s still hard today to explain how I got a college education at all, as the obstacles were formidable.

Though I didn’t know it, 1974 was the first year I had something like civil rights. The Rehabilitation Act of 1973 had just gone into effect. A precursor to the later Americans with Disabilities Act, the 1973 law, also known as Section 504, said in plain English:

No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. 

Because my college years occurred over forty years ago I was often a solo act—that is, the later cultural advantages of the disability rights movement were not yet apparent. When I needed help I was strictly on my own.

I had no Braille skills; no large print texts; no note takers; and only occasional readers. I did have books on tape and long playing records from the Library of Congress.

What else did I have? A good ear. A great memory. And a capacity to ask important and appropriate questions in classrooms.

These traits are simply characteristic of all good students. But boy oh boy did I need to rely on my own capacities.

Just think of reading Moby Dick on long playing records. Reading Melville that way was roughly akin to taking a real sea voyage.

As I say, I was often on my own. Blindness in college was essentially a voyage aboard the Pequod but with no crew. I had no blind Starbuck; no Queequeg with thick glasses.

Alright. It was worse than that.

Consider the professors who said: “you can’t have extra time to complete this assignment. Sorry kiddo, but education is competitive.” Or the ones who said: “you should take something easy like intro geology.” And the ones who called me a whiner and complainer because I was invariably falling behind.

In those days, a request for an accommodation was unheard of. Moreover, if you had to ask for one, the prevailing ableist impulse was to simply declare the person with a disability as a malcontent or malingerer.

There were no disability services offices. Zero.

And while today’s university administrators and faculty are generally not well informed about disabilities, certainly they are called upon to understand accommodations are part of the game. (I say “generally not well informed” for I hear consistent stories about arbitrary, peevish, and cruel professors who routinely believe their classrooms are “accommodation free zones”).

As for me, somehow, despite all the odds I became a professor at a well known institution of higher learning.

Today the blind have talking computers, iPads with speech, iPhones with scanning and voice capability, electronic texts that can be read aloud with software, and there are laws supporting access to educational materials.

Some days I think I’ve arrived in the golden age. I’m an Athenian in 5th century BC.

Who would imagine that in 2015 blind students and faculty would still be struggling for a foothold in colleges and universities? Yes while most colleges have offices devoted to providing disabled students with accommodations, a clear majority do not take that work seriously enough to incorporate it into how they develop software for learning or how they provide library services in the age of required accessibility. This is true at my own university, Syracuse, where there are no concerted systems to assure that academic materials are available for blind students or faculty.

I know of course because I’ve been talking about this on my campus for over four years.

Some administrators here at Syracuse have grown weary of me. Unable or unwilling to address the accessibility failings of the university, they have let me know in rather unsubtle ways, that I’m a malcontent.

I am of course no such thing. I’m just persistent. Persistent with a disability and in a job that requires me to utilize and incorporate texts in my research and teaching.

My problems are not “mine” as some in administration would like to have it.

I know there are blind students and scholars all over America who are in my shoes.

My wet, spongy, Melville shoes.

If think if I had a rock band I’d call it “Blind Melville”.

Our first song would be: “Nobody Loves You When You’re Blind and Need Books.”

 

 

 

One Morning in a Diner, Some Twenty Years Ago, with my First Guide Dog “Corky”

I’d always been a big baby where emotions were concerned. All out. Big reaction. Always a fight or flee endorphin rush. If you live perennially on the edge of total dismissal you have a hair trigger. The dog, the dog—who knew—was imparting delicacy to my inner life. I saw it after a few weeks of being together. The emotional rain was gentler. A man, a rather disheveled and clattering old man, someone the locals seemed to know, for we were in the Ithaca Diner, and he was going from table to table chattering with breakfasters, not asking for money, but essentially playing the role of the Id, sassing people, perhaps in ways they required, who could say, but there he was, pressing into each person’s space, piercing the psyches of strangers with his needle. He called a cop “Porky” and an elderly woman “Grandma” as he lurched steadily toward me. “Oh Doggy!” he said. “Doggy doggy doggy!”

Then he said, “What kind of fucking person are you?”

I tried my best Robert deNiro impression: “Are you talking to ME?”

He was not amused.

“A prisoner!” he shouted, for the whole diner was his stage. “This dog’s a prisoner!”

For a moment I felt the rising heat of embarrassment and rejection. Then, as he repeated my dog was a slave, I softened. In a moment of probable combat I stepped far back inside myself, not because I had to, but how to say it? Corky was unruffled. She actually nuzzled my leg. The nuzzle went up my torso, passed through my neck, went straight for the amygdala.

I smiled then. I said, “You’re right. And I’m a prisoner too.”

I don’t know if it was my smile, or my agreement that did the trick, but he backed up, turned, and walked out the door. Strangers applauded.

I’d beaten a lifetime of bad habits. I hadn’t fallen into panic, or rage, or felt a demand to flee.

I sat at the counter, tucked Corky safely out of the way of walking customers, and ordered some eggs. I daydreamed over coffee.

When I was eleven years old I fell onto a pricker bush. It’s hard to say how I did it, but I was impaled on hundreds of thorns. My sister who was six at the time, and my cousin Jim who was maybe nine, fell to the ground laughing as if they might die. I begged them for help which of course only made them laugh all the harder. I remember tears welling in my eyes and their insensible joy. I also knew in that moment they were right to laugh—that I was the older kid, was a bit bossy, disability be damned. I was the one who told my sister and cousin what to do. Now I was getting mine. My just deserts. In the end I tore myself from the monster shrub and stormed into the house. I sulked while they continued laughing outside.

Perhaps I thought, there in the diner, I could live henceforth in a new and more flexible way.

“Is it as simple as this?” I thought. “One simply decides to breathe differently.”

I saw, in a way, it was that simple.

Saw also how a dog can be your teacher. And while eating wheat toast I thought of the Buddha’s words from the Dhammapada:

Live in Joy, In love,

Even among those who hate.

Live in joy, In health,

Even among the afflicted.

Live in joy, In peace,

Even among the troubled.

Look within. Be still.

Free from fear and attachment,

Know the sweet joy of living in the way.