Sobre a Deficiência Visual

Planet Of The Blind - a memoir

Stephen Kuusisto


Fotografia de Stephen Kuusisto e seu cão Corky


I've entered Grand Central Station with guide dog Corky, my yellow Labrador. We stand uncertain, man and dog collecting our wits while thousands of five o'clock commuters jostle around us. Beside them, Corky and I are in slow motion, like two sea lions. We've suddenly found ourselves in the ocean, and here in this railway terminal, where pickpockets and knife artists roam the crowds, we're moving in a different tempo. There is something about us, the perfect poise of the dog, the uprightness of the man, I don't know, a spirit maybe, fresh as the gibbous moon, the moon we've waited for, the one with the new light.

So this is our railway station, a temple for Hermes. We wash through the immense vault with no idea about how to find our train or the information kiosk. And just now it doesn't matter. None of the turmoil or anxiety of being lost will reach us because moving is holy, the very motion is a breeze from Jerusalem. This blindness of mine still allows me to see colors and shapes that seem windblown; the great terminal is supremely lovely in its swaying hemlock darknesses and sudden pools of rose-colored electric light. We don't know where we are, and though the world is dangerous, it's also haunting in its beauty. Even to a lost man with a speck of something like seeing, this minute here, just standing, taking in the air as a living circus, this is what tears of joy are for.

A railway employee has offered to guide me to my train. I hold his elbow gently, Corky heeling behind us, and we descend through the tunnels under the building. I've decided to trust a stranger.

Welcome to the planet of the blind.




Blindness is often perceived by the sighted as an either/or condition: one sees or does not see. But often a blind person experiences a series of veils: I stare at the world through smeared and broken windowpanes. Ahead of me the shapes and colors suggest the sails of Tristan's ship or an elephant's ear floating in air, though in reality it is a middle-aged man in a London Fog raincoat that billows behind him in the April wind. He is like the great dead Greeks in Homer's descriptions of the underworld. In the heliographic distortions of sunlight or dusk, everyone I meet is crossing Charon's river. People shimmer like beehives.

I was born in the Exeter, New Hampshire Hospital three months prematurely, in March 1955. My identical twin brother lived exactly one day. Taken together we weighed five pounds, but with the death of my twin, my own weight dropped. My chances of survival were thought to be minimal; I was incubated and given oxygen. Within a week my weight stabilized, and then I began to grow.

Many children born prematurely in the fifties and early sixties suffer from visual impairments. The condition (which still exists, though it is less common today) is known as the "retinopathy of prematurity." The tiny blood vessels of the retinas are formed in the last trimester of pregnancy, so if a child is born prematurely, the retinas are often underdeveloped. In the fifties incubators were overly oxygenated, which further complicated the retinopathy — babies incubated with too much oxygen would routinely go blind. In my case the retinas were scarred.

Nystagmus is an additional complication of "ROP." My eyes dart uncontrollably and often appear to be jumping in my head. Such "darting eyes" make it nearly impossible to focus. I was also born with strabismus, or crossed eyes, and though later surgery would try to correct this, the operation was only an aesthetic exercise — I never gained muscle control over my eyes.

20/200 is the definition of legal blindness. What a normal person sees from a distance of two hundred feet, the blind person will see from twenty. In childhood my best visual correction was 20/200 in my left eye. With that eye I had enough muscle control to place my nose on a piece of paper and perhaps make out something if the print was dark and large. Up until the age of forty I could do this for a half hour at a time. Later, inoperable cataracts made this impossible. From the beginning my right eye couldn't read and would hop like a starling in a hedge, recording glimpses of color at the tip of my nose.

The sensorium of the blind who possess some marginal vision is by turns magical and disturbing. There is nothing in front of you, nothing behind. Now there is a shadow in the shape of a man who has appeared from the mist. How lovely and terrible this is! It's a mad, holy vision, the repeated appearance and disappearance of the physical world.

My sister once spent some time in meditation at a Hindu ashram in the south of Germany and came home having seen the very air atomize into a dazzling whirlwind of living particles. Hearing her story, I thought of walking alone at dawn, the morning light like stained glass. I can see these things as I walk to the comer store for milk. It's like living inside an immense abstract painting. Jackson Pollock's drip canvas Blue Poles comes to mind, a tidal wash, an enormous, animate cloud filled with light. This is glacial seeing, like lying on your back in an ice cave and staring up at the cobalt sun.

The beauty is of course conditional. Many who have minimal sight are photophobic, like myself, and daylight is painful. I can't go outdoors without wearing the darkest possible glasses. When I enter a shop or restaurant, I am totally blind. When my eyes have adjusted, I still cannot read a menu or catch the eye of a waiter. My eyes dance in a private, rising field of silver threads, teeming greens, roses, and smoke.

Such waltzing is not easy. Raised to know I was blind but taught to disavow it, I grew bent over like the dry tinder grass. I couldn't stand up proudly, nor could I retreat. I reflected my mother's complex bravery and denial and marched everywhere at dizzying speeds without a cane. Still, I remained ashamed of my blind self, that blackened dolmen. The very words 'blind' and 'blindness' were scarcely to be spoken around me. I would see to this by my exemplary performance. My mother would avoid the word, relegating it to the province of cancer.

Given my first pair of glasses at the age of three, I carried them in secret to the garden and buried them under the wide leaves of a rhubarb plant. A year later the glasses were discovered by the family that was subletting our house while my parents and I traveled to Scandinavia. They couldn't imagine how these tiny gold-framed spectacles had been interred in the earth.

Once when I was nine or ten, my sister Carol, who is four years younger than I am, came home from school in a state of inspiration. She had read a book in class about a young woman who went blind and then found her life renewed with the help of a guide dog. Carol recalls how I threw snow at her as she pretended to be blind with the help of our family's golden retriever. I ran behind her, stinging her with ice.

Who would choose to be blind?


I WOULD CONQUER space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle — with nothing more than adrenaline for assurance.

How do you ride a bicycle when you can't see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances — the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.

Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it's a shadow, a hole in sunlight, and pedal straight through.

Here's another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I'm alive in the wild carrot leaf!

I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I've been seen. Nothing with this boy must be amiss! He belongs on the street!

Now I'm on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I've barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.

And then there are shadows surrounding me. Please let these blurs not be children!

Yes! The shadows are trees.

Now I touch the glasses, heft them back to my face. They are heavy as padlocks.

Quickly I raise the bicycle and straighten it.

I ride.

In a mathematical world there are so many factors: Were my years of cycling an actuarial gift? Who else was on the road as I was cycling in the opposite direction? Did I stop on the true day of terminus, the day when my numbers were up?

I cycled from the age of ten until I was thirty. During my last decade it was occasional, more furtive, a headless activity like taking drugs. By my twenties, I knew it was injurious. As a child, I had only that graven need to resemble.

Of course my mother gave me this bicycle in the first place, a gift made from her guilt. I love her for the gift of speed and remain angry because of it. Mine was a boyhood of thrills and nausea.


MY FAMILY SETS sail for Scandinavia aboard the SS Stockholm in 1958. We travel to Helsinki so my father, a professor of government at the University of New Hampshire, can study the cold war through the medium of Finnish politics. I am three years old, and I've already buried my first pair of glasses.

Aboard the Stockholm I elude my mother by running wildly. At that age I am already the dervish of labyrinths. No adult can confine me to a stateroom. On "D" deck I become the mascot of a sailors' card game. The red tiles of the lower decks and the white tunics of the sailors swirl like the walls of a funhouse. How do I avoid falling down a gangway? I recall the dazzling machinery of the engine room as a storm of color.

In Helsinki I lean close to the gray, birdlike women with ether eyes who ride the trams. Each has survived the wartime starvation, and now, in the darkest city on earth, they are riding home with their satchels, which had taken all day to fill; the stores were ill-stocked and the lines were long. I remember their almost feral attention to the trolley's windows at twilight. As a small boy, I climb ever closer to them, their strangeness imprinting on me an indelible image of hardship.

One day, climbing the stairs with my father in our apartment building, we meet a severe old woman who speaks to my father in Finland's brand of Swedish. I am acutely aware that I am the object of scrutiny. She points with a cane:

"Tsk tsk," she says, "barna-blind — blind child."

Her voice echoes on the stairs, "barna-blind" — blind from birth. I was not quite sighted; I wished to never be blind. Didn't this old crone know that I'd buried my first pair of glasses under the rhubarb? This will be a nearly lifelong puzzle for me: Am I not a sighted boy? Am I not attempting bravely to see? What must I do?

I know that I don't belong anywhere, so I become the spindrift of ocean liners, streetcars, and stairwells. I must have driven my mother insane. That year I survived on banana ice cream cones, which I extorted my parents to buy from the streetcorner dairy stands. I could see their effulgent red and blue awnings and quickly learned to make vocal my need for ice cream in loud Finnish so as to inspire my parents with the stares of the crowds.

Delicate, skinny, inordinately active, I was sharpening a sixth sense that fostered the impression in my parents and almost everyone else that I could see far better than I really could. Such acting requires a capacious memory; in the gauzy nets of pastel colors where I lived, every inch of terrain had to be acutely remembered. In the heart of every blooming and buzzing confusion, I found a signpost, something to guide me back along my untutored path. Twenty-one years later, when I returned to Helsinki with my own Fulbright grant, I found the door of our old apartment building by following the dropped bread crumbs of the blind child's choreography.

Even today I live in the "customs house" between the land of the blind and those who possess some minor capacity to see. It's a transitory place, its foundation shifting, its promise of stasis always suspect. There are moments when I see better than others since conditions of light are peremptory and loaded with impact. The whims of architects have enormous power over my experience of vision: a postmodern shopping mall with its cantilevered floors and mirrored walls — all lit by indirect lighting and high-intensity bulbs — can reduce my momentum. The darkness of restaurants and bars tightens my chest. I edge along without poise, feeling the sudden reverberations of alarm that come with not seeing. In a room designed for urbane and sexy people, I feel the boyhood panic, imagining myself an old man holding objects close to his face. How does one become inured to unpredictable moments of helplessness? I turn a comer into direct sunlight, and without warning I'm the boy grasping at tremendous air.

I remember Helsinki's open-air fish market, where I ran through the crowds of winter shoppers. The green and gold of vegetables and fruits, and the icy chill of the butchers' stalls where the walls were blood-red — all of it drew me on and on. I could run in abandon bouncing off strangers, wild to elude my mother and absorb the colors. The market became my customs house between the ocean of blindness and the land of seeing.



BACK IN THE States, my mother must fight with the local district to gain my admission to an ordinary first-grade classroom. I am a legally blind child, and it is the era of Kennedy. It will be another thirty years before people with disabilities are guaranteed their civil rights in the United States.

I am emphatically told not to mix. In some cases this comes from the parents, who think I might break during ordinary play.

"The kids are playing rough now, so why don't you come over here with us?"

I sit in a lawn chair while my mother's friends take in the sun and the fragrance of suntan lotion mixes with their cigarettes.

Mrs. O'Daly lets me sip her coffee, although there is some joking about stunting growth.

"You don't want to play with them, they're nasty," one mother opines, with a stream of smoke.

"You're better off right here!"

There is laughter at this. It's true: I'm better off hiding behind the lawn chair. But I can hear their children through the trees, the shrieks and exaggerations.

"Why don't you tell them to play with me?" For this, there is no answer, only the hasty decision to change a baby or "start on supper."

In our town there are no discernible men or women with disabilities, with the exception of World War II veterans. A disabled child is without a category: one simply doesn't see them. My mother, in turn, believes that I should live like other children — at least as much as possible. It's a decision that must make her as lonely as her son. There are no books about blind children or how to bring them up, no associations of parents or support materials, at least not in rural New Hampshire. Instead there are assumptions: Blindness is a profound misfortune, a calamity really, for ordinary life can't accommodate it. For my parents this puzzle will be even harder because my vision loss is a form of "legal blindness" — a confusing phrase that means that I can see fractionally, though not enough to truly see. Not enough to drive or operate machinery or read an ordinary book.

So I am blind in a bittersweet way: I see like a person who looks through a kaleidoscope; my impressions of the world are at once beautiful and largely useless.

The one thing my parents know for certain is that blindness is stigmatized. Fearing for my financial security, my father tries to buy a life insurance policy in my name, only to find that blindness is an impediment. That same year my mother decides to enroll me in public school instead of an institution for the blind and finds both consternation and disapproval from school and staff officials.

So on a hot August day we are visited by a social worker. We live at the end of a forested dead-end road in Durham, a road of screaming blue jays and orange daylilies. A black sedan stops in front of our house, and a heavy woman climbs out with the help of the driver. Then she unfolds her white cane and makes her way to our door. My mother is roused both by a horror of blindness and incipient hostility for bureaucracy. Who are they to say her son is blind? He mustn't be seen in the company of a blind social worker — the stigma might be impossible to erase.

I'm sent to the cellar. There I find a piano, a toy chest, a variety of amusements. The cellar doesn't feel like a banishment, but I know something's up. I stay at the top of the stairs, my ear to the door.

The muffled sound of adults in dispute is a terrible thing for a child. Beyond the cellar door I hear their gloomy voices as they argue about where I should be in the world. That argument has never ended for me: on that day over thirty-six years ago, both were approximately correct. The social worker says I am too blind for the public schools of the day. My mother counters that I wouldn't have the same kind of social experience at a blind institute. "Those places teach kids how to cane chairs," she says. The blind woman insists that I won't learn braille in a public school, won't learn to use a white cane. My mother cannot accept that these are real drawbacks — she takes this as further proof that I should be enrolled in the public school system. Hers is an urgent and primitive choice, one that today would be unnecessary as blind children regularly attend public schools and receive cane, travel, and braille lessons at the same time.

Blind though I am, my mother is hell-bent on emphasizing my small window of vision. I am going to be dimly sighted and "normal." According to her, I will damn well ride a bike and go sledding, and do whatever the hell else ordinary children do. To her the prospect of the white cane denotes the world of the invalid.

But I need that cane. I am about to begin an impossible contest with the sighted world, a display that today is known as "passing" or more correctly, "trying to pass."

It's hard to explain how, as a child, or even as a grown man, I have been so proficient at hurtling forward without breaking my neck. To those watching, it must seem as if I see. My blind friend Peter, who has never seen anything but darkness, moves the same way. I suppose this plummeting through the world involves the same inexplicable faith known to skydivers. Fast blind people have exceptional memories and superior spatial orientation. By the age of five, I was a dynamo. Wanting to see me run, my mother saw me run and guessed that I must be seeing more than I really could. And so I landed like the bee who sees poorly but understands destination by motion and light and temperature.

I turn and climb down the stairs, remembering to avoid the canning jars and Sears catalogs. I'm headed for the ancient mahogany upright piano. It's music I'm after; I'm already entranced by the keys. In my grandmother's attic I'd turned the handle of a Vitrola and discovered Caruso, a voice like milk and iodine pouring from inside a paper horn. In our own house I listen to my father's Tchaikovsky records, running my fingertips over the cloth facing of the electric speaker.

When the social worker leaves, my mother does not come to find me. Instead she goes to her own room and sleeps with the curtains drawn.

I stay at the piano for hours.

After supper I go outside and shout in the empty road in the hope that some kids will play with me.

Later, alone in the woods, wet elbowed and wet kneed, I catch my trousers on a sunken rock, lean into the ground, press my chin into the moss. The things I see are an alembic of distilled colors and shapes.

"Heaven," says Robert Frost "gives its glimpses only to those / Not in position to look too close."

I push my face into the fireweed.



BY THE AGE of five, I've been in and out of hospitals. The muscles around my eyes have been cut and stitched as a means of correcting my strabismus. After the surgery I have bandages on my eyes for several months, and that is when I learn to hear. I spend whole afternoons listening. I can hear the wooden gears of the railroad clock that hangs on the far wall.

The strabismus operation has made me appear less cross-eyed, though the eyes move independently, and in their separate depths of color they afford me nothing like depth perception or balance. By now my glasses are extremely thick. They allow me to make use of my delicate residual vision, but they're cumbersome and painful to wear, and the target of teasing by other children.

On the first day of school the teacher, Mrs. Edinger, posts a photograph above the blackboard; two chubby infants swaddled in diapers stare down on the class. Those who are caught whispering will have their names appended under the babies' curled feet.

"This is the Baby Board," says Mrs. Edinger, "and anyone who talks out of turn will have their name put here. Only babies talk when they're supposed to be quiet!"

When I enter the public school, I am without assistance. Without "low vision" specialists or special education standards, I am without the benefits of proper orientation and mobility training. There are no braille lessons for me, no large print materials. The air flashes like quartz, and I see nothing of the arithmetic lesson. My fingers slide in all directions. I clasp and unclasp the lid of my pencil box, trace the scars on my desk. I pull at my eyelids in an effort to refine the mist.

I must ask a question, some nearly useless thing like how many dogs are on the blackboard. I turn to Janet, who sits next to me, and whisper, "How many dogs are there?"

"I see Stephen talking!" cries the teacher, and there is the staccato of chalk in action. "Stephen's name goes on the Baby Board!"

I am swollen shut, catch myself, sit straight in my chair as laughter breaks around me.

Without an assistant I am forced to listen.

I listen like a person telephoning in the dark.

I listen like the ornithologist who unwraps bird bones from tissue paper.



EACH MORNING MRS. Edinger begins the day with a Bible story. Here come jawbones, slings, infants floating in baskets, a lion's den, and a trapped man. Now she recites frankincense and myrrh, robes of gold, a nativity star.

Everything comes to me by repetition.

On the playground I lean against a wall, immured by the strings of words that have accumulated during the morning. Around me my classmates are playing a game loosely called Kill the Germans — they race through the November mire letting out shrieks. There is a great deal of arguing about who is dead. Sometimes I lower my head like a fullback and run right through them.

Back in the classroom, I count imaginary frogs, butterflies, spacemen, following the lessons without usable print or concrete numbers. The world is skewed according to the compensatory pictures flashing through my head. I follow the teacher's words and make a kind of caged progress, trapped as I am in my own neural nets.

One day Mrs. Edinger posts a photograph of astronauts above the blackboard.

"Astronauts orbit the earth," she says, "and you can only be an astronaut if you are very good at your lessons."

Students who finish their in-class assignments before the rest will henceforth be "astronauts" — permitted to orbit the classroom and peer over the shoulders of the others.

John Glenn has just orbited the planet, sailing upright from sunrise to sunset within an hour. A television has been wheeled into our classroom, and I listen to Walter Cronkite, who is sufficiently loud even for the dead.

Now as I press my nose to an impossible page, trying to read some inscription in the dust of damaged retinas, here comes a kid to loom over me. He is orbiting.

"Hey," he murmurs, "get a little closer!" and he shoves my nose into the paper before passing down the row of desks.

Later, playing alone, I pretend to be Walter Cronkite, shuffling unreadable pages. The attic is my television studio.

I sit under the sloping eaves, and with rain on the roof for accompaniment, I talk to my audience.


IN SCHOOL THE printed word scurries away from my one "reading eye" — words in fact seem to me like insects released from a box. While the class reads aloud, I watch the spirals of hypnotic light that ripple across my eyes when I move them from side to side. I do not belong here. My little body at this desk is something uncanny — a thing that belongs in the darkness and that has been brought to daylight.

But I talk, answer questions, make others laugh. I'm interested in everything and tell the class that I can spell Tchaikovsky.

Mrs. Edinger, she of the Astronaut Board, becomes the first saint in my life. She takes it upon herself to help me read. After school we sit at her desk, and with my nose jammed into the pages, we go over the words. And though I'm squinting and struggling supremely over each alphabetic squiggle, she has the patience of an archaeologist, one who dusts the microscopic shards before putting them away. With her, I hold my eye very still and make out the words.

Years later I learn from my mother that Mrs. Edinger is a black woman and perhaps the first person of African American heritage to teach in this local New Hampshire school. We are mutual explorers as we go over the hopeless print. She's noticed my determination and has figured out that I have a photographic memory. This probably contributes to her desire to see me read — she knows I'll retain the words that I've struggled so hard to grasp.

Hours of after-school time are spent before I can match the class in reading. I have to hold my book an inch from my eye and try hard to hold the hot, spasming muscle. The exhaustion of this is like the deep fatigue drivers feel after being too long on the road. The ordinary effort of reading is, for me, a whole-body experience. My neck, shoulders, and, finally, my lower back contract with pain. The legally blind know what it is to be old: even before the third grade I am hunched and shaking with effort, always on the verge of tears, seeing by approximation, craving a solid sentence. Then the words dissolve or run like ants. Nevertheless I find a lighted room inside my head, a place for self-affiliation. I am not blind, am not the target of pranks.

But leaving my reading lesson, a boy I think of as a friend steals my glasses and my panic brings me alive like a tree filled with birds: I navigate with my hands.

"Hey, Blindo, over here!"

He laughs along with several others, then they run.

I lunge with my arms straight following the sounds of sneakers. I'm determined not to cry: steel keys revolve and lock in my brain. Then I trip on a curb and cut my hands on a storm drain.

To this day I picture that boy clutching my glasses at a safe distance and watching me drift about. I learned early that with my glasses I'm blind, without them I'm a wild white face, a body groping, the miner who's come suddenly into the light.

On this particular afternoon I am instantly put on display. Now, in one stroke, I am a jellyfish, measureless and unwieldy. More than thirty years have passed since that moment, but I'm still disconcerted by what it felt like to belong so thoroughly to other people, to be, in effect, their possession. There should be a book of etiquette for those who find themselves in the predicament of the monster. Robbed of my glasses, I was no longer an impaired boy who'd been barred from sports. Instead I was amphibious.

I suppose he must have thrown the glasses to the ground and run away. Probably an adult was coming; I can't remember now.


BY THE THIRD grade, I'm wearing glasses fitted with telescopes and am promptly labeled "Martian." My anxieties live like pilot birds atop my shoulders. I pull all the hair from my eyebrows. Other kids call me Magoo over and over again.

In the sixties, Mr. Magoo is the latest descendant in a long line of comic blind characters playing the role of the sighted man. Valentin Hauy, an eighteenth-century French educator and the first great benefactor of the blind, witnessed one such spectacle in 1771. A group of blind men were arranged in the village square of St. Ovide, all of them dressed like clowns, each wearing a dunce's cap. These are the people who unwittingly expose themselves, who can't control their hands.

Hauy saw them in the village square, each carrying a musical instrument — a fiddle, a horn, a hand organ. On their faces the town magistrate had placed large cardboard cut-out spectacles. Placed before them on a desk were lanterns and sheets of music that the men made burlesque attempts at reading by playing their instruments, with predictable results. The villagers found this amusing enough to keep the show going for several weeks. When the musicians could no longer make money, they returned to their lives of begging. But their concert gives Magoo a comic pedigree.

In a magazine advertisement for the Blue Cross/Blue Shield health insurance companies, "Mr. Magoo" is a bald little blind man whose tightly shut eyes look like question marks. There's no attempt in any representation of Magoo to cover his eyes with dark glasses.

In the advertisement Mr. Magoo is driving down a hill in an antiquated car. He's blissfully unaware that he's crossing the railway tracks. He mutters about the "potholes" as he drives across, just ahead of an oncoming train. Magoo is like Charlie Chaplin, who, blindfolded, circles the edge of a precipice on roller skates.

His power resides in his luck, which is angelic. His every arrival is a miracle.

When Mr. Magoo drives a car, America's television audience experiences the same comic frisson as Hauy's villagers who laughed at the beggars wearing cardboard spectacles. But the blind are seldom depicted as being more than this. They are blind fools, or conversely, they're suddenly cosmic.


ASHAMED OF MY telescopes, I hide them in drawers and walk about with my head tipped slightly to the left to gain more refraction from my heavy prismatic glasses. I take to spending hours in attics or barns, places filled with tools and broken machinery.

My world is full of particulars, a glass case in a provincial museum. Here's a black dancing slipper with glued crimson feathers; a ballpoint pen from the Marcellus Casket Company. I'm nailed down with curios. But even the nearest things are evasive; objects buzz as in early motion pictures. Even as I wish to see, to pass for one who sees, that sight is eluding me.

In a neighbor's shed I stand at the dusty keys of an upright piano and count how many have lost their ivory — two black keys are missing. And mice or moths have long since feasted on the purple felt that lines the back of the keyboard. I hear wasps striking windows, and a hand mower, and somewhere far off a radio tuned to a baseball game. But I am absorbed in the colors and odors of this instrument, which looms over me like a wreck, the hull that Robinson Crusoe returned to. I am drawn by its worn pedals, the pegs and hammers, the cast iron frame, and the sour metallic scent of its dead strings.

I press my nose to everything. I look perpetually like a mendicant on Ash Wednesday.

I draw the skeleton of a catfish across the bridge of my glasses.

I go to the woods and sit on the mossy ledge of a great stone. As blue turns to black, the sky is momentarily transparent. I am skating there, tuming my head sharply, intuiting the next place to rest my forehead.


MY SISTER is a true friend, a collector of shining oddities, a woman's shoe containing a daddy longlegs and a moth that she has found in a dusty corner of the garage.

We spend the afternoon building a votive temple around this insect sarcophagus. For guards we have a stuffed lion, a fleshcolored plastic figurine of Tarzan, a Raggedy Ann doll wearing a red skirt. I need someone to bring me objects and say "Look at this!" My sister doesn't seem to notice that I have to place each thing up against my jumping eyes. She's oblivious to her brother's resemblance to Franz Kafka as a kid — a child whose eyes can't look straight.

Some years ago I came across a photograph of Kafka at the age of five. The photo shows that he had a wandering eye, or what doctors call a "lazy eye." Though he's trying to look at the camera, he seems lost. He's dressed like a circus ringmaster. Behind him is an animal with the head of a sheep, though its hindquarters and tail suggest something of the dog. It has a bridle and saddle, as though it's meant to be ridden. This is a photographer's studio creature, something from the workshop of an odd cobbler. Kafka looks at home with the creature; his world is routinely a place of ill-defined animals, of things that are not what they seem.

I imagine he sees blue smoke. Faces loom, adults are rising from the vista like sensate stones. These are the gorgeous mirages of not-seeing, moments red and green and black as the studios of Matisse. The moments are seriocomic: a white horse stands at the circus, no, it's a bedsheet in the wind.

I, too, went to the circus. Under the great Barnum tent, the lion tamer — Clyde Beatty in a two-story iron cage — appears like the Duke of Mantua, fighting three leopards with a chair and whip. All this I did not see. What I did see was the pink floodlit haze where that cage stood, heard the crack of a whip, the roar of the cats. The faces of the children and adults who surrounded me in the raised wooden bleachers were lit as though their cotton candy contained glowworms. But beyond this, wherever I looked, the concentration of the colors flew apart, the kaleidoscope circus fog of Gypsy tints and shadows flooded me.

I watched the face of my uncle, a heavy, simian, unshaven man, one who was not given to smiling. He studied the drama of Clyde Beatty, his expression as intense as that of the immigrant who has sighted shore at last. Around his head floated smoke rings from his expensive cigar. He told me at last that the cats were lying down. The crowd was wild. When I looked toward the cage, I saw astral lava, a pink hurricane of cigar-lit stage lights, and then the gold flash of what I took to be the whip.

Unable to see, I watched appearances abound, and while the animals were too far away, the harlequin masks of family loomed around me. Like the boyish Kafka, I smiled.


Dusk is the hour when I'm most likely to misjudge the speed and flow of traffic. It's rush hour — people hurrying home in the autumn rush hour, some on foot, some in cars. In such moments I often feel prematurely aged: I want some help in crossing the street. I want to reach for someone's arm.

Ironically, though, as things visual are in doubt, they grow in unconventional beauty. Dear Jackson Pollock, I've entered your Autumn Rhythm. The irregular or sometimes certain flight of color and shape is a wild skein, a tassel of sudden blue here, a wash of red. The very air has turned to hand-blown glass with its imperfect bubbles of amethyst or hazel blue. I stand on the ordinary street corner as if I've awakened at the bottom of a stemware vase. The glassblower's molten rose has landed in my eyes.

I shift my glasses — a slow moon rises on my path, things appear and disappear, and the days are like Zen-autumn.



In the old student pub — a dark cellar, I meet a strange new girl named Bettina. We talk and drink German beer. Bettina is a polymath, angry, rebelling against her father, who is an executive at a television network.

"The bastard, he'd have been comfortable during the Crusades!" she says, and stubs her cigarette out in an ashtray on the bar.

With this altogether irreverent young woman, I experience puppy love. She's an Irish country girl with long, thrilling, unkempt red hair. Red leaning back toward gold. Bettina cooks spaghetti over a gas ring in a basement. (She never has an apartment of her own, instead she occupies other people's places without self-consciousness. She knows everyone.) I accept a glass of wine, I'm wrapped in earth tones and sparks. My hands stink of Gauloises cigarettes, my fingers spasm from the nicotine.

She squeezes the juice of a lemon into the salad. Puts Tabasco in the pasta sauce. She throws raw carrot chunks in there too.

"Why are you putting carrots in the tomato sauce? That's disgusting!"

"Oh, shut up, if you'd eaten more carrots, your eyes would be better."

"I ate lots of carrots! My eyes went bad from masturbation!"

"Well, maybe you don't need to do that anymore."

I can't speak, because she's kissing me. It's a potent kiss, her tongue is wet and vital in my mouth.

She draws me to the floor, pulls down my pants, guides me inside her. I can't believe how quickly she does it, my brain is still stuck on the word carrot.

She's on top, loosening buttons down the front of her black dress. As her breasts touch my outstretched hands, I come with every ounce of my viscera. I come the way all virgin-boys should — with surrender and reverence. I'm trying to say something.

"It's okay," she whispers. "I'm wearing a diaphragm."

I start to rise on my elbows.

"I'm sorry, I — "


Her face closes in, her red hair falls over my eyes, tickles, smells faintly of shampoo. She guides my fingers gently to her clitoris. She's an open meadow! A birch tree at midsummer, the sunlight seeming to be above and inside her.

Like all virgins, I'm a narcissist: surely no one has ever experienced this abundant wet circle of girl before? Not like this!

I'm on a rug in a spot of lamplight. The sauce simmers behind us. There's a clatter of water pipes, there are apartments above. Dishes rattle somewhere. Bettina is astride me, and leaning, she kisses me forcefully, filling my mouth with her sip of cabernet.

For the first time the vast silence that follows sex expands in my chest.

"I love you!" I say it. "I love you!"

I begin to cry. I who cannot see a woman's face, who can't look someone in the eye, I, I, who, what, never thought this could happen. I'm crying in earnest, copious sparkles.


She arches her back, I slip from her, a little fish, laughing and weeping. Bettina refastens her dress, retrieves a tortoiseshell hair clasp, arranges it, sings very softly some lines from Yeats: "'Ah penny, brown penny, I am looped in the loops of her hair.'"


At "Guiding Eyes" there are soldiers from Israel, a scientist, a schoolteacher, an auto mechanic, a carpenter....

We have diabetes, glaucoma, retinopathy of prematurity, cataracts, war wounds.... We are a democratic group.

One of us is rich. Some of us are very poor.

One goes to AA.

One woman who plans to become a social worker refers to the blind as "blindies."

One is afraid of dogs, but she is going to overcome it.

One is a connoisseur of beer.

One of us hears a brutal drumming in his ears wherever he goes.

All of us have been lost, fallen down stairs, driven cars on wild sprees, had flings with gluttony, God, and a hundred other fumbled embraces.

Some of us still know how to play.

One of us bought a motorcycle when he went blind. He goes out in his yard each morning and turns the key and stands listening to the Harley sounds.

Hank, my roommate, is a study in profound survival. He lost his eyes in a shooting accident. Bird shot in his eyes, some in the front of his brain. Then he had a stroke. He taught himself to return to the world of speech by singing in his head, remembering the lyrics of a song.

We sit on opposite sides of our dorm room, which smells faintly of floor polish and wool blankets, and we share Fig Newtons and listen for instructions from the intercom. We unpack our suitcases feeling as if we're in a barracks. Outside in the hallway people move past slowly feeling the walls.

Hank is recently blind. His eyes are hand-painted and made of plastic. He wins my affection right away by telling me how he dropped one of his eyes on the floor at the school for the blind he'd been forced to attend back in North Carolina. His description of groping for an eye on the floor is sheer poetry.

He is happy that I can see a little, figuring that I might find his dropped eyes before he steps on them.

We laugh over my story about a girlfriend who dropped her diaphragm — before she could retrieve it, her dog raced up and ate it.

Then I tell him about T.J., who woke in the night and drank a cup of bedside water, only to discover in the morning that he'd swallowed his girlfriend's contact lenses.

We imagine our dogs picking up the dropped stuff in our lives.

A new world.

The End


Sobre Kuusisto:

“Kuusisto is a powerful writer with a musical ear for language and a gift for emotional candor. He has written a book that makes the reader understand the terrifying experience of blindness and that stands on its own as the lyrical memoir of a poet.” — New York Times

“A stunning memoir... The landscape that emerges from 'Planet of the Blind' is not one of loss and pain but of unspeakable beauty, innocence and awe.” — San Francisco Chronicle

Entrevista com Kuusisto.



Planet Of The Blind - a memoir
Stephen Kuusisto, 1998
selecção e recolha: Maria José Alegre
fontes: The New York TimesRandom House Disability Culture.


Publicado por MJA