October 1990
TEXT: LOU ANN WALKER
PHOTOGRAPHY: MARY ELLEN MARK
There is nothing in our experience to help us understand what a deaf and blind child perceives. Stuffing our ears with cotton and closing our eyes is a false exercise because we have already heard and seen-we have knowledge of the world. Even being plunked down in a foreign country where we don't speak the language is not equivalent, for our minds already have structure: We know how to learn a language. The experience of children who are both deaf and blind is far more alien. How can they hope to communicate when linguistic patterns are based on hearing or sight? They are like newborns-frustrated by not being fed or clothed or touched in precisely the right way and unable to explain what they want. But it would be a terrible mistake to overlook the capacity these children have for creativity, and for joy , a mistake the teachers at the Perkins School for the Blind rarely make.
214I-302-013
KAREN, 17
Karen uses her lower lip as a sense organ, pressing against almost everything she encounters, including a stuffed duck.
It's difficult to describe what I saw when I first visited Perkins's deaf-blind program. I had been carefully prepared, but I still expected the children to be slightly less brilliant Helen Kellers, that through the sign language I know (my parents are both deaf) I would be able to communicate with them. I had only to allow a child to put her hand atop mine while I signed. Although a few of the children are at that level, many are not, and the longer I stayed, the more I realized this was a school about reaching the unreachable. With some 85 percent of the children in the program handicapped even beyond their blindness and deafness, Perkins could easily be a place of hopelessness and despair. It is anything but.
The school looks like a beautiful Ivy League campus. It is surprisingly free of barriers and protective devices-other than a fence that encircles the pond-with rambling paths that encourage students to be mobile. The only hazards are conga lines of deaf-blind kids signing as they walk. One signs into the hand of another, then the middle person passes the conversation onto the third, and so on. Everything is by touch here. In the dorms each room is marked by an animal in wood relief, a rabbit or a camel. Dresser drawers have cutouts of socks and shirts taped to them. In the main building, Howe, there is a museum of stuffed animals-foxes and owls and bats that teachers take out for the children to touch.
In the last two decades Perkins, founded in 1829, has gone through significant changes. The upheaval in education caused by mainstreaming means that most blind or deaf children are educated in their home districts, leaving more complicated cases - slow learners, those with behavioral problems and children with more than one disability-to be sent here. Today Perkins's deaf-blind program has 55 students with varying degrees of hearing and vision loss and is one of the largest in the country. There are an estimated 6,000 deaf-blind children nationwide. Such children are a third of Perkins's enrollment, the rest made up of blind, head-injured and severely impaired children. Because antibiotics have greatly decreased the number of children who become deaf and blind as a result of high fever from a disease such as meningitis, and because the children of the rubella epidemic in the early 1960s have graduated, Perkins administrators had expected the school's population to shrink. Instead there is a whole new batch of children who are the product of modern medical technology so premature at birth they weighed less than a chicken. They were saved, but not without cost.
214I-276-010
KENNETH, 10
Some deaf-blind children develop "stims," reflexive habits for extra stimulation, like banging their heads against walls. That's why Kenneth wears his helmet most of the time.
Lindsay Allison Norcross, seven, is doing the hokey pokey. When the dance is done, she rests her hand on the hand of teacher's aide Maura Heffernan. In sign, Maura explains they're going to play "head, shoulders, knees and toes." Suddenly, flaxen-haired Lindsay grabs Maura's long hair and glasses and pulls as hard as she can. Emily Lowell, the teacher, rushes to extricate Maura. "She thinks it's funny," Maura says, gently prying Lindsay's fingers from her hair, then signing, "No, it hurts," into Lindsay's hand. Lindsay goes back to touching her own head, shoulders, knees and toes and at the end of the game falls delightedly into Maura's arms.
Lindsay was born nearly three months premature. At some point in the incubator, or soon after she was removed from it, the procedures that saved her life caused her to lose her sight and virtually all her hearing. Smell, taste and touch are about all she has left.
For Lindsay and her teachers, this day is like many others, full of discoveries. "Her mother calls her Baby Rambo, " Emily says, smiling. " She wrote a note this morning: 'Lindsay's in a crazy mood. She's undressed three times before the bus.'
Lindsay goes to the "calendar," boxes of objects that represent the day's activities. There's a box with a squishy ball for gym class. And a can of shaving cream for crafts class. Lindsay takes a pile of scented lather and rubs it over her face and neck, her closed eyes upturned, her neck stretching up as if to catch the light or heat. Then she sits in a rocker for a few minutes, alone-perhaps impishly plotting. Wearing pink corduroy overalls and a yellow turtleneck, she suddenly heads for the calendar boxes, dumps them on the floor and finds the shaving cream again, squirting and patting the scented foam.
Like any seven-year-old's day, this one will be packed with running and jumping, poking and pulling. She'll lose interest in what she's doing one minute only to become intrigued by something totally unexpected. Like detectives, her teachers will watch closely for clues and constantly put signs into her small hands, hoping that what they do will connect with something in Lindsay's mind. She is poised on the brink of discovering language, but at Perkins they know the process is painstaking. There will be no magic moment like Helen Keller's discovery of water at the well. Helen Keller had 19 months during which she saw and heard before her illness. Lindsay doesn't have the benefit of those inner images, that inner voice.
When Lindsay entered Perkins two years ago, she could stand but barely walk. A fall she'd had at three had seared her off walking. For months she'd come into Emily Lowell's classroom, both thumbs in her mouth, fingers pressed into her deep-set eyes. Then she'd curl up into a ball in the corner.
Lindsay was advanced compared with many-her parents had been making great efforts to work with her, although day-to-day progress seemed slow. Emily and two aides patiently, gently coaxed Lindsay, got her to explore, took her on field trips. Within three months she was walking on her own. Now she will joyfully, even heedlessly, roll down a huge hill on the school grounds in Watertown, Mass. "There are all these little moments that move me," Emily says, "like the first time Lindsay floated in the pool without her Floaties." Now, like other deaf-blind children, Lindsay loves to submerge herself at the bottom of the pool and stay as long as she can, the crushing water creating a marvelously pleasant sensation.
Lindsay uses a few signs. One of them is for pudding, her favorite treat. She lightly scratches the palm of her left hand with the first two fingers of her right, then brings her fingers up to her nose; she loves the smell, easily imagines it. She uses the same sign for other good things, uses it to say she'd rather be eating pudding than doing what she's doing. It isn't easy to predict her likes and dislikes: She doesn't care to touch plushy animals, doesn't like crunchy foods. When she doesn't like the smell of a paint in art class, she'll cavalierly toss it over her shoulder. The frustration of not being able to communicate is often overwhelming. Her tantrums are frequent, heart-wrenching. They start suddenly. Her face tenses. Her body begins writhing, her arms and legs flailing, punching the air. And it's during the temper tantrums that one can see how extraordinary the people at Perkins are. They take the screaming and thrashing calmly, trying to figure out what has caused the fury, and then they go back to work, tirelessly, lovingly providing Lindsay with language, the key to ending her agonizing frustration.
214I-255-013
BARBARA, 14; HILLARY MITCHELL, SCHOOL COOK; DENISE O'DONOVAN, TEACHER; PETER, 12
Cape Cod is a favorite Perkins field trip, where children and staff can play fearlessly in the sand.
Perkins is a laboratory of mysteries, mysteries of the human mind. Each child is a puzzle. At first the children seem distant. When I first saw Karen, huddled over a desk, she had just turned 17. Rubella had left Karen deaf and blind at birth. The state of Indiana pays $70,000 a year to Perkins so Karen can be here, half the total cost of her care. The school, through endowments, makes up the difference.
I didn't notice Karen much until one day after classes when aides took her to the cemetery, a seemingly odd place for a field trip except that it's filled with statues to touch and water fountains to splash in. Karen seemed to blossom there, to let her personality loose. She's small, not even five feet tall, and there is a softness to her skin, an inner light. I found that if she likes a person, she puts together the fingertips and thumb of one hand and touches her cheek- she wants a kiss. If she really likes you, she puts two hands against her cheek-two kisses. She, like all these children, has her own tricks for identifying people. It can be the touch of a hand, a smell, but Karen uses hips-absolutely appropriate when you discover how she loves to give hugs. At the cemetery she was remarkably sensual, touching stones, smelling and caressing plants. Delicately, she touched petals to her protruding lower lip, which she seemed to use as a sense organ.
The next day I saw what school psychologist Pam Ryan wryly calls Karen's "unique sense of humor." Karen, who likes mischief, walked down a school hallway, grabbing papers off the wall. And then I heard it: "Heh, heh, heh," she laughed.
214I-022-018
LINDSAY, 7; KRISTEN, LINDSAY'S MOTHER
Small skills are big victories. Lindsay has just learned to climb the stairs at home standing up.
I many institutions the children's lives become rote, their individuality squelched. But this is the first school for the blind in the United States, the school where Helen Keller's teacher, Anne Sullivan, was trained. And this is the school Keller herself attended. The young teachers and aides here seem to savor what's different about each person. They honor the students' imaginations, some of which are expansive. Christin, eight, has what she calls her "kids," fantasy dolls with handicaps, some on crutches, others in wheelchairs, some blind. They were filling the classroom and her entire house-until her parents and teacher set limits. Curiously, the dolls are never deaf.
Randall is a vigorous eight-year-old. He has Usher's syndrome, a congenital disorder of some deaf people that results in partial to full blindness. He has lost the lower portion of his visual field, but he still sees well and is an avid reader, doing work above his grade level. "I like to read about dinosaurs and fish and wolves." He grins, signing "fish" with an undulating hand that rolls over imaginary waves. Perkins is preparing him for the possibility of losing the rest of his sight.
Glenn, 19, with fair skin and red hair, loves maps and kites and anything that flies. Not long ago he got tangled while mounting a horse and fell. He laughed and signed "airplane": He'd rather be flying.
Orlando, 21, has a square build and curly brown hair. He is completely blind and completely deaf, and has been at Perkins for only a year. He had previously attended a variety of schools and institutions and was labeled troublesome. " 'It's funny. We get these referrals saying, 'Oh, they're so hard to deal with,'" says Barbara Mason, supervisor of the deaf-blind program. "Here he isn't a behavioral problem at all." One complaint was that Orlando tore apart the automobiles he rode in. But the Perkins staff discovered that with nothing to do on a long drive, Orlando would become curious about how screws worked. So he'd unscrew them.
When I met Orlando, I signed my name into his hand, but he quickly ran his hand down my leg to a shoe. "Oh, he knows people by their shoes," said Lauren Lieberman, a gym teacher. At night the people who work with Orlando have to hide his shoes and his roommate's slippers or he'll stay up all night making them dance. It's unclear what happened to Orlando in the other schools, but he is frightened of much around him. One can't help but wonder how different he might be had he long ago received the kind of attention Lindsay now gets.
The longer I am at Perkins the more a sense of timelessness sweeps over me. The outside world ceases to matter. I become more and more fascinated with the children, with what they're accomplishing. And I begin to realize that's the secret of Perkins. Each child is measured against himself, not against any outside norm. This is life stripped down to the bare essentials. I begin to appreciate what teachers are up against when they have to figure out what a spoon really is, that children have to feel rough trees and smooth trees so they don't have a limited idea of what the world is like. I think about the conventions of clothes and eating. There's no artifice in these young people. Their faces are unencumbered by concealed feelings.
Eventually Perkins students are prepared by a special team to take outside jobs-filling flower pots with soil at a greenhouse, cleaning apartment buildings, working as messengers in a hospital, preparing salads in restaurants. Upon graduation, those who are capable will move into apartments with supervisors who come by each evening to help with checkbooks. Most will go into group residences. But there is no rush. The learning process will take as long as it takes.
The teachers are constantly touching, holding, exploring with the children. It is a job of remarkable intimacy. They change diapers and feed their charges. They often come home bruised or scratched, falling into bed at seven p.m. They're not paid as much as public school teachers, and there are rarely breaks during the day. After school they write lesson plans. It's perhaps the most intense relationship between pupil and teacher that occurs, one that is powerfully rewarding. "Sometimes I can't believe I get paid for this," teacher's aide Ashley Pope says without a trace of irony.
As a gift to parents, Emily Lowell takes each of her students for a weekend to her parents' home on the beach in Maine. Isaac, seven, with deep dimples and long eyelashes, is often wild. Emily's parents hosted a big party, and Isaac grabbed people's eyeglasses and ran. During Lindsay's weekend Emily's parents couldn't figure out why their daughter was removing everything but the bed from the room-even the hope chest. In the middle of the night they understood when Lindsay began banging, playing and exploring. Without any perception of light, she often reverses night and day. And without language it's not yet possible to explain to her that she needs sleep, that others can't sleep. "It's good for me to take them," Emily says, laughing. "It helps me understand what their parents go through.
"They're a big part of my life. I have dreams about Lindsay. Then I wake up and I'm looking for her."
214I-061-007
LINDSAY, 7; ISAAC, 7; EMILY LOWELL, TEACHER
Eventually, Perkins students are prepared to care for themselves in the outside world. But they are never rushed.
END