Eye Rolling and Disability, a Brief Explanation

Do the blind have occult powers? I’m not sure generalizations about any group are worthwhile but as a blind man I can hear sighted people roll their eyes at me.

I hear this at least twenty times a day and sometimes the incidents number higher.

When sighted people roll their eyes it makes a sound like the world’s smallest theremin. It’s a squeaky Hollywood monster movie effect almost below the level of human hearing.

In a meeting with colleagues I say: “I need an accessible version of this handout,” and I hear a dozen teensy monster movies around the table. “The Thing” has risen in all those unseeable heads. The blind guy needs access. We don’t feel comfortable. Oooooweeeeeeeoooooo!

In monster movies it’s not the monster himself (herself) who starts the theremin music. It’s the scientist behind the creature.

I like to think of normatively constructed civic life, which is narrow and grudging about disability in public as the scientist behind the creature.

We can call the scientist the social construction of normalcy as we tend to do in the field of Disability Studies. But the invisible hand of normalcy is perverse, phobic, gloating, superior before its private mirror. The cliche we use most often when thinking of social normalcy is “thinking outside the box” and I’m here to tell you that the disabled are always outside the box. This is where all our thinking and working occurs.

The compulsive normals in their invisible lab coats don’t like inconvenience which means anything or anyone that alters their routines. Need a Braille menu? Theremin. Need an accessible website or application? Theremin. Need a functioning wheelchair lift into a university lecture hall. Theremin. Want audio description of a film being shown on your campus. Theremin. Ooooooweeeeeooooo! If you ask for these things you’re the monster. And worse, you’ve gotten loose. Quick! Hide the children!

There’s theremin music in the supermarket. The little child sees the blind person with a cane or dog and says: “Mommy, what’s that?” And mommy replies: “Shhhh! Don’t look!” Cue the scary music.

Meantime I hear the eye rolling everyday. Catch a cab? Squeeee… Boarding an airplane….
Entering the restaurant. Just walking on the ordinary street.

Checking into a hotel.
Attending a sporting event.
Once, when I was entering a major league baseball stadium with my guide dog, a rather drunken woman said loudly to her man, “why would a blind man go to a baseball game?”
Oooooooweeeee….

The disabled ruin the neat social order.

I almost never have a day without the music.

ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Fast Virgin Train, Blindness, and the Talking Toilet

If you’re blind and travel you know a good deal about the world of talking appliances which are designed by sighted people and are intended to help people with vision loss but are really rather goofy: elevators that announce “doors open” and the miserable voices of bank machines. But just this week I met the greatest talking device of them all: the speechifying toilet on the Virgin train from Liverpool to London.

Now the Virgin fast train talking toilet (hereafter known as the VF3T) wasn’t designed for blind people. She was created for morbidly depressed travelers. I call her “she” because I’ve been told her voice is that of a woman who won some kind of contest.

Imagine reading an advertisement: “Be the voice of the Talking Toilet!” and thinking it sounds like a great opportunity. You want to break into the big time, be a star of stage and screen. Surely you’ll work your way up from the crapper. (Whatever happened to being on the radio?)

Picture me in the unfamiliar swaying toilet cubicle. No Braille on any buttons. I can’t figure out how to shut the door. A passing stranger reaches in and says, “Here, I’ll press the shut button for you.”

Poof. Door shut. The toilet starts her speech.

Before saying anything more let me just ask: “who thought that giving a toilet a woman’s voice, an actual human voice was a grand idea?” Of course the answer is “a sighted person” for if you’re blind and groping in a vaguely intimidating water closet hearing the following is piercingly bad: 

“Hello there! Welcome to Virgin!”

I was mortified.

Had I entered an already occupied WC?

“I hope you’re having a wonderful day!”

“Did you know there are many splendid traveling opportunities with Virgin?”

“Alright,” I thought, “she’s a toilet bragging about train service. Not a big deal.”

But she continued. She was a kind of self help guru talking up the glories of life, the virtues of moving about the world and the joys of being alive.

The VF3T wants to keep you alive.

The VF3T is designed to prevent disheartened travelers from offing themselves in the loo.

“Aren’t sighted people funny?” I thought.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Who Are the Blind Poets? Hmmmm.

A friend asked me “who are the blind poets other than Milton, Homer, and Borges?” The question is interesting because it assumes blindness is static and cleanly historic in a biographical sense. At the moment he asked I made a joke and said there’s me. And I mentioned Dan Simpson a blind poet in Philadelphia who is supremely talented. But the question evades its precise answer. Samuel Johnson was blind; James Joyce was also. We don’t think of them this way. Why not?

Dr. Johnson had several disabilities—he was tourettic, had seizures, was legally blind (though the term didn’t exist in his day) and prone to severe bouts of depression. Like me, he could remember everything he read for the pain of reading was profound and you better get it right the first time. This is what made him the right man to craft the first English dictionary. Moreover, when he attended a theatrical production, though he couldn’t see the stage, he remembered every syllable.

Joyce’s eyes were a source of lifelong agony:

“Worsening inexorably over his lifespan of sixty years, the eyes of Joyce were the main source of his misery. It was a feat of preternatural breadth, his undertaking of literary labours via a shroud of painful blindness. Joyce’s struggle with his eyes led him to naming his daughter Lucia, after St Lucia, patron saint of the blind. A scrutiny of him as a young man attests to his longsightedness – his glasses magnify the Irish-blue eyes. The wearing of such spectacles is notable because it reveals that Joyce had eyes of a crowded shape : anatomy which increases the risk of high pressure developing in the eyeball. Ordeals of the ophthalmic type began in youth, but inflammation in Joyce’s eyes (rather than pressure) was the initiator of his sufferings in 1907.”

This is of particular interest:

“Oculists were consulted to assuage the agony. But those attending to him could not acceptably douse the flames. To curb the flammatory pain from his eyes the doctors injected Joyce with arsenic and phosphorus. Since these dosings were inefficacious they would apply a fistful of leeches to his scalp. Ill-advisedly, he had his teeth extracted, on the strength of some advice which ascribed his ocular ills to the bacteria in his mouth. Surgery of the eye was performed and the series between 1917 to 1930 comprised iridectomies, sphincterotomy, capsulectomy, and a removal of cataracts.”

By the time Joyce wrote Ulysses he had ten percent vision in one eye and none in the other.
He carried a cane, not because he was a dandy but because he was afraid of obstacles and dogs.

Again one has to ask why aren’t Dr. Johnson and James Joyce understood as being great blind writers?

Performativity comes to mind—Borges was lead around by a sighted guide. Milton was read to by his daughters. These are accepted blind representations. That Joyce traveled and Johnson rambled the dark streets with disreputable friends doesn’t fit the trope of the helpless blind.

As of this morning, this is my answer.

For the full article on Joyce’s eyes see:

https://www.bmj.com/content/343/bmj.d7464/rr-0

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Galileo, Blind, Saw Stars With His Body

Yes people go blind late in life and they go on living, seeing in different ways. Sight is an immoderate thing which makes its imagined absence a sublime condition, a vast terror, something beyond understanding. Blindness is not this at all. Trust me: I know thousands of blind people. They don’t live in the unlit depths of the sea. They’re not helpless on the streets. As with Galileo, blind at the end, they go on knowing. It’s painful to write such a rebarbative sentence but the sighted know nothing.

There are different kinds of not knowing and at the risk of going Hegelian let’s say that the largest of these is tied not to phenomenology but superstition. Seeing is more than believing, it’s conceiving. Why if you can’t see an object it simply disappears. The majority of people believe this, world over, and it doesn’t matter their respective level of education. Doctors, scientists, professors of education, analytic philosophers, data miners, mattress testers, all imagine that without sight the essences of things will vanish. The American poet Wallace Stevens concludes a poem called “The Snowman” with the line: “the nothing that is not there and the nothing that is”—a perfect jeu d’esprit for the sub-phenomenological dread of vision loss.

The blind of course, who are simply your neighbors, children, mothers, fathers, the college student in the room next door are always in the position of having to reassure the puny sighted that life without peepers has meaning. For meaning you can substitute any variety of terms: dignity, joy, hot sex or popcorn. “My life has as much meaning as yours,” says the blind girl though she says it in Morse code tapping her way down the sidewalk with her stick. Tap. Tap. Tap. I’ve got rhythm. Possibility. I’m fantastic. Do you see how fantastic I am? And of course the sighted can’t believe it. They’d sooner believe in alien abductions than rest assured that a man, woman, or child can have a lyrical, involved, sophisticated and examined life without billboards, Keep Off the Grass signs, and all the other quotidian junk the sighted absorb minute by minute. In fact I’ll admit it right here. I feel sorry for the sighted who are prisoners of whatever dopey nonsense they encounter: panel truck messages, junk mail, commercial art, what the Beatles once called “corporation tee shirts.” Far from needing to prove my life has value I think the sighted are the most wanton people, walking about with advertising slogans on their lips.

Now you’ll say I’m being a little hard on the sighted and you’d be right. But I’m not wrong to suggest the blind are forced across the globe to play out the “fear of blindness absolution charade” by performing logo-rhythmically a dance that says our lives have value. This is true for all disabled people. Our crippled existences are OK. You see? We are happy just like you! With blindness though there’s this extra twist: “We can be happy despite your all encompassing dread that objects and pathways forward exist only because of sight.” Our lives are more difficult to imagine owing to the weakness of the average man or woman’s visual centric ego. It’s as if the customary sighted person is no more than a child who believes that when his or her parents turn out the lights everything in the room disappears.

I’ve just returned home to Syracuse from a trip to Kazakstan where I met with blind children and their parents. Inclusive education is still not customary for disabled kids in much of Central Asia and I spoke to an audience of parents and young people with vision loss about having a life. After the hour was up I was on the verge of tears. The sighted believe the blind are not of this world. They believe it from Kansas to Nur Sultan. How many rooms have I entered just to say “your customary fears are groundless.” I”d put a question mark there but I don’t know.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Cranky

I must admit I’m a cranky man. This means I’m a hurdy gurdy man, a street nuisance. Did you know most curbside organ players were disabled? Many were war veterans. Jobless. They played for your amusement. Several cities in America didn’t like them. “Ugly Laws” were adopted across the nation at the turn of the last century—edicts stipulating bothersome, unsightly people were forbidden to appear in public. This was excellent news for the asylum business. The United States loves to lock people up for any reason at all—you’re black and deaf. Asylum. You’re blind. Asylum. You’re an immigrant in Trump’s America. Instant prison camp. Native American. Home detention. Gay? The Asylum. The Los Angeles County Jail is the largest psychiatric facility in the U.S. Cranky? You bet. I’m so cranky I can’t muster irony.

Disabled I know a good deal about cruel irony—“the act of using somebody’s words against them, usually when something to their great detriment is about to be inflicted upon them.”

I’ll never forget an administrator of a certain college who, once he had me behind a closed door told me I wasn’t a competitive blind person, why he had a roommate at university who was a blind Olympic rower and so forth. He was essentially firing me because I’d asked for a reasonable accommodation.

But you see here’s the trap. I’m cranky if I talk back, assert my dignity and my rights. I am especially cranky at the University where when I ask for basic ADA 101 accommodations, (a sighted graduate assistant to help me in my daily work) accessible texts, descriptions of overhead projections, asking that our websites and teaching software be accessible and so forth) I’m labeled as a real cranky pants. Academic ableism is built on cruel irony. “If you were more like us you wouldn’t have a problem. You don’t like what’s happening to you? You must be the problem. Not us. Not us able bodied birdies….”

I’ve met so many able bodied birdies. They may have different kinds of feathers but their song is always the same.

Ableism, the experience of it, requires the French adjective écœurante —for disability discrimination is simultaneously heartless and sickening. I recall the professor of English at the University of Iowa who told me my blindness would preclude me from being in his “famous” graduate class on Charles Olson. Another professor snickered when I said I was reading books on tape. When I protested the chairman of the English department told said I was a whiner and complainer. I wept alone in the Men’s room. My path forward to a Ph.D. in English at the University of Iowa was stymied. This was a full six years before the ADA was signed into law. Who was I to imagine a place at the agora’s marble stump?

Now I had an MFA degree from the creative writing program at that same university and I just went ahead and wrote books and sometimes appeared on radio and television and I wrote for big magazines and over time I received tenure at The Ohio State University. Later I went back to teach at Iowa despite my earlier experience and these days I’m at Syracuse. I’m a survivor of sorts. I’m a blind professor. The odds were never in my favor. Somewhere along the way I began thinking of Moliere in my private moments and I laughed because after all, every human occasion is comical and Moliere recognized the comedic types one encounters in closed societies better than anyone before or since.

It doesn’t really matter what institution of higher education you’re at, if you’re disabled you’ll meet the following Moliere-esque figures. The heartless and sickening ye will always have with ye if you trek onto a college campus. You’re more likely to spot them first if you hail from a historically marginalized background however, the ecoeurantists are more prone to blab at you if you’re disabled, especially behind closed doors. Ableists love closed doors. All bigots love closed doors.

The “Tartuffe” is an administrator, usually a dean or provost who will tell you with affected gestures that he, she, they, what have you, cares a great deal about disability and then, despite the fact a disabled person has outlined a genuine problem, never helps out.

The “Harpagon” is also an administrator, but he, she, they, can also be a faculty member. The Harpagon is driven by rhetorics of cheapness. It will cost too much to retrofit this bathroom, classroom, syllabus, website, etc. If the Harpagon is a professor he, she, they, generally drives a nice car.

Statue du Commandeur: a rigid, punctilious, puritanical college president—“this is the way we’ve always done it. If we changed things for you, we’d have to change things for everybody. Yes, it certainly must be hard…” See:

The Geronte: when his son is kidnapped he says: “Que diable allait-il faire dans cette galère?” (What in the deuce did he want to go on that galley for?” In other words, he brought this upon himself. “Really, shouldn’t you try something easier? I could have told you.”

These are the principle types of ableists. I invite you to add your own.

The one thing they have in common besides a privileged and thoroughly unexamined attachment to the idea that education is a race requiring stamina and deprivation, is that they all genuinely believe that accommodations are a kind of vanity.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Faeries, come…

All those who believe I’m vagrant—blind as I am
Walking with my stick or dog—
That woman in Boston who hoped to pray for me
Who ran away when I offered to pray for her,
What’s wrong with a disabled prayer?
I stood in the street and waved my arms.
In London a girl called me “poor Dearie”
And thrust coins in my hands.
Once in Cleveland a red faced man
Followed me block after block
Proposing to help…better I thought
Than the alternatives—
The asylum; the work houses.
In general the poets of my nation
See the blind as an existential blank.
But tired of standing for nothing
I sing and walk down Broadway
The sweet, manifold, wishful syllables
Of William Yeats—
Faeries, come take me out of this dull world,
For I would ride with you upon the wind,
Run on the top of the dishevelled tide,
And dance upon the mountains like a flame.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger

Free Cookies, Evident Dignities

No one gets a free cookie in the work camp called America. You kids get back to work. Get on your scabby knees and scrub the jetsam.

Last night two cabs in Brooklyn refused to give me a ride. No to the guide dog. No to the man.

The man was told, despite the ardor evident in his heart, and perhaps observable on his smiling face to get back on his scabby knees.

No taxi. No cookie. Same old.

I never get used to it.

This came after a beautiful poetry reading honoring the late poet Deborah Tall at Bookcourt, a lovely indie bookshop. We had a good turnout and wonderful readers and wisdom and lyrical intelligence were all about us. About. We were about together honoring a poet who passed away young and who’s posthumously published final book is now out.

I said to someone, “well they can’t take our souls” in reference to Trump. Later I had to say it about the taxi men. You can’t have my big plush heart you bastards. And I’m terribly sorry no one gave you a free cookie. I haven’t gotten mine either.

Meanwhile I almost got run over yesterday while walking down Sixth Avenue when a bicycle messenger ran a red light and almost struck me, save that my guide dog made a quick maneuver and saved us both.

Meanwhile strangers, pedestrians, witnesses jeered the bicyclist who fell of his damned bike and was scrambling to get to his feet.

Meanwhile I thought he’s just another guy who didn’t get his cookie. I couldn’t be angry. I was alive. He was alive. We went our separate ways.

Meanwhile I like this recipe for the free cookie:

I part Walt Whitman’s breakfast (whatever he was having)

2 parts reexamined opinion (almost anything by Naomi Wolf)

3 generous doses of George Orwell’s “Animal Farm” and—

3 equally generous doses of Susan Sontag

Garnish with Christopher Hitchens “Notes to a Young Contrarian”

You can tinker with this recipe. It will accept many ingredients but the caveat is that the input, the human sine qua non must represent ardor and a history of assisting others. So, for instance, Ayn Rand doesn’t quality. No also to Norman Podhoretz.

You can put in Hilda Doolittle or Roberto Clemente if you like.

And of course we’re talking about spirits, so it’s up to you how you’re going to get this into cookies.

See? I’ve nearly forgotten being almost killed and then denied my rights.

The Guide Dog and the Cruel Nun, Italy…

I didn’t want to cry. The wide sun was covering my face. Tourists were all about. The day was warm for April. I didn’t want them, the tears, the choked tears of disability exclusion but they came and I leaned against a wall outside Santa Maria delle Grazie, home to “The Last Supper” and wept before strangers. I’d been denied entry to the church by a nun. She’d hissed like a goose and had pointed me away. It was Corky—no dogs in the grotto! Her disdain was cruel and it belonged to the viaticum of ruthlessness and I understood it wasn’t Corky she objected to at all but blindness itself, a pre-Roman atavistic stigma. I heard it. It rose from the back of her throat.

I’d encouraged Connie to go in and so I swayed and cried alone and hated myself. It wasn’t the spectacle of weeping that disgusted me, it was having to cry and letting a dried up craven, superstitious dingus get the best of me. “Supper Sister” had turned me away from Heaven and she knew it.

I slid down the wall and sat on the pavement. Corky, Labrador, large, affectionate, concerned, pressed against me and I cried all the more. The guide dog was supposed to fix this; to give me freedom; open the world, and to the best of her ability she had. We were in Italy where only three years ago I’d been living a sealed and provincial life in a small town, unsure of how to go places. Corky had done her part.

Godammit! I cried all the more. What was wrong with me? The Italians weren’t friendly to guide dogs, and over a span of three days I’d absorbed the evil eye from at least eighteen men and women. So what? Where was my inveterate, subversive streak—though I’d lived much of my childhood and adolescence fearing disability, I’d also been wild enough to say fuck you to teachers and aggregate bullies. Fuck you, I’d said to the high school chemistry teacher who wouldn’t describe what was on the blackboard. Fuck you, I’d said to the college professor who said I shouldn’t be in his class. Fuck you and Fuck you. And Fuck you, Nixon. Jesus! I’d been undone by a nun! A sputum bespattered unfounded wobbly nun!

I laughed then because that’s how it is with tears of discrimination—you get there.

Huffington Post: Dogs in the Playing Field

I’m so very pleased to mention I’ve been invited to be a guest blogger for The Huffington Post. It’s quite an honor. Below is an excerpt published yesterday, December 4. I’d be grateful if you’d visit the site and if you like the post, please feel free to share it with your social circles. Thank you!

Dogs on the Playing Field

Steve_Corky_GEB — Steve Kuusisto & guide dog, Corky

No one gets a free pass to public life — “public life” — the elusive goal people with disabilities strive for. While the village square is sometimes difficult to enter often a service animal can help. In my case I travel with a guide dog, a yellow Lab named Nira who helps me in traffic. Together we race up Fifth Avenue in New York or speed through O’Hare airport in Chicago. We’re a terrific team. But even 23 years after the passage of the Americans with Disabilities Act and 70+ years since the introduction of guide dogs in the U.S. life in public isn’t always friendly. Lately it seems more unfriendly than at any time since the late 1930s when the blind had to fight for the right to enter a store or ride a public bus. What’s going on?

Read more of Dogs on the Playing Field…

Dog Schmooze

Professor Stephen Kuusisto is the author of “Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir “Planet of the Blind”, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges“ has just been released. Listen to Steve read “Letter to Borges in His Parlor” in this fireside reading via YouTube. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com