The little boy sleeps on Star Wars sheets, the blanket kicked back. About 6:30, a bird’s cry draws him from a dream he won’t remember. From an open window, the October air feels cool on his face. But it takes the hissing drum roll of his father’s shower to bring Jed Barton fully awake this Monday morning.
Sliding off the bed, he walks out the door and turns left into the bathroom. He knows the way without feeling. Moments later, still groggy with sleep, Jed walks into his parents’ room across the hall, crawls into the big bed and cuddles under the warm blanket beside his mother.
Even before the diagnosis, Debby and Ned Barton knew.
A few days after they brought Jed home from the hospital seven years ago, Debby put the baby on the bed. She turned off the lights. Drew the curtains. Switched on the flashlight. Pointed the beam deep into Jed’s blue eyes.
He didn’t blink.
She didn’t tell Ned.
Ned didn’t tell her—until later—that he had lifted Jed up to a window bright with sunlight.
Not a flicker.
“We knew we were going to have a great beautiful, wonderful child,” Ned said. “We never considered having a kid with any problems. … It was something that happened to the next family.”
Jed is pulling sneakers over bare feet when his mother walks into his bedroom a little after 7 a.m.
“Okay, how’s this going?” she says. “Uh, where are the socks? Oh, twerp city. Get your sneakers off. Get your socks on. Let’s move here.”
“Where are they?” Jed asks.
“On the rocking chair where they were supposed to be.”
“Well, they weren’t there the last time I saw.”
His hand probes the chair until he finds them on the seat. He laughs. “I got ‘em.”
On Nov. 21, 1974, Debby was barely six months pregnant with her first child and certain she was headed for miscarriage as Ned drove to Women and Infants Hospital in Providence.
They had been married five years. Ned helped run the family manufacturing company in Bristol. Debby was a substitute teacher in Warren.
On the delivery table, she heard a voice say, “Oh, my God. It’s twins.”
Jed was born first. He and his brother weighed 5.3 pounds—together.
That night, they woke her to sign a surgical release for the younger one. He died the next day. Jed hung on.
“Jed was in crisis constantly,” Debby said. Heart murmur; jaundiced liver; infections; anemia; apnea that stopped his breathing; lungs too immature for the essential exchange of oxygen and carbon dioxide.
For weeks he lay in an incubator in the special care nursery, heart and respiratory monitors taped to his chest, a plastic hood over his head feeding him the oxygen he needed to live.
“My pediatrician called me every day … ,” Debby said.
“He would say the oxygen was 50 percent or 60 percent. If it went from 60 to 50, I would say, ‘Well, that’s good.’ And he would say, ‘No, that’s not good. … When it’s up that high, it’s dangerous … [He] used the words retrolental fibroplasia. …”
It wasn’t until three months later, when Jed came home, that she read about the disease. How an epidemic of blindness struck thousand of babies kept alive in incubators in the 1940s, and every year still blinds 500 premature babies who weigh under four pounds at birth. Doctors discovered that the oxygen that “preemies” need to prevent brain damage also withers blood vessels in their retinas.
hemorrhage, leaving scar tissue that in severe cases detaches the retina,
snuffing vision forever. Without oxygen, certain death. With it, life—and the
risk of blindness. The damage doesn’t show up
Two weeks after Jed came home in February 1975, an ophthalmologist made the diagnosis. By then, Ned and Debby had made their own secret tests. “It was not anything that came out of nowhere,” Debby said.
“He’s blind in both eyes,” the doctor said.
At 7:30 A.M., the Barton boys—Jed, 7, Bradford, 5, and Curtis, 3, are seated at the kitchen table, juice, bananas and toasted muffins before them. Jed is rubbing his right eye with his knuckles.
“Jed,” his mother says sharply, “put your hand down and start eating.” The hand drops.
Jed never has to be told to stop sucking his thumb; eye-rubbing is the blind child’s bad habit.
Debby isn’t sure why Jed does it.
“Does your eye hurt, Jed?”
“No,” he will say.
“Does it feel good to rub it?”
“Whatever the reason, I have to constantly tell Jed to get his hands down because it’s unpleasant to look at. It makes him appear different.”
His breakfast waits, but he has to feel for it.
He lifts his right hand off his lap. Fingers straight out, palm down. He starts at the edge of the table and makes a pass over the Formica. Slow and deliberate until it is over the muffin. The hand hovers like a spaceship and then descends. The fingers make a circle, pick up the bread, bring it to his mouth. He puts it down, and the hand reaches out again, looking for the cup. It stops when he feels the plastic.
“Is this mine?”
“Yes,” his mother says, “that’s yours.”
Whenever Debby felt depressed those first days, she went into Jed’s room and held him. Today, the center of Jed’s eyes are milky white. As an infant, his pupils were gray. The retina hadn’t detached completely yet.
“It was like the dot was set back,” Debby said. “It wasn’t horrible, it was a curious thing.”
Jed didn’t look at her, but when he moved his head, she moved with it, needing the eye contact even if her baby couldn’t look back.
“He was adorable … and really happy. … That just jolted me out of it. That’s when I decided I’m not going to feel sorry for myself. … It’s not me that’s blind, it’s him. If anybody is going to cry, he should do it.”
The Bartons were assigned a social worker from State Services for the Blind. “My boss is blind,” he told them, “and no, we don’t have to spoon-feed him lunch.”
“That made a tremendous impact,” Debby said. “To know there were regular-type people holding regular-type jobs that we could think of in terms of our son’s future.”
“I’ll be damned if I’m going to raise a pencil-seller,” she told Ned. “The question is not ‘Why me?’ The question is ‘What do I do about it?’
“We decided we were going to do the most creative thing we could possibly do with this situation … ,” Debby said. “And we had to go out and find how to do it. That was the tricky part.”
She read If You Could See What I Hear, the autobiography of Tom Sullivan, a blind actor and musician from Massachusetts.
“People forced him to function as a human being, not as a blind human being. That made a lot of sense to me.”
“You want to help a blind child,” she read in Sullivan’s book. “Then start by teaching him the common courtesies: how to turn his face toward the person addressing him, how to dress well, to brush his hair, to mix with sighted children, not as a freak, not as someone to be pitied, but as a person, an individual with feelings and hopes, little hells and talents too.”
Debby and Jed’s grandmother began to learn Braille.
Until Jed was three, he was enrolled at Meeting Street School in East Providence, which treats handicapped children. Therapists worked with him in an airy room lined with cushioned mats, dotted with gym apparatus and toys designed to stimulate his other senses. They gave Debby exercises for Jed at home.
“I felt like I was solving the problem,” she said. “You’re not only dealing with it, you’re working on it.”
Jed’s blindness wasn’t apparent to casual observers until he was about a year and a half old.
remember going up to New Hampshire skiing one weekend.” Debby recalled. “We
stopped at a Howard Johnson’s. Ned was paying, and Jed was asking a hundred
questions. Ned said to the lady: ‘He’s blind. That’s why he’s asking all these
questions.’ And the lady said, ‘I know.’ It was
the first time anybody said, ‘I know.’ They had always said, ‘He is?’ It was such a jolt. Suddenly they knew he was blind. … And as he became older it was more and more
When Jed turned three in 1977, his parents and the Meeting Street staff wanted him to go to regular nursery school for the play and social skills all 3-year-olds need.
“I was starting to be aware that he could not make social contacts easily,” Debby said. “He might not know if there was another child standing next to him to say ‘Hi’ or ‘Give me that toy.’ He had to be put in situations to meet kids.”
By then, however, Jed was the responsibility of the Barrington School Department. They recommended a preschool program run by the Rhode Island Association for the Blind and Visually Impaired or their own Child-Find class, which targets kids with learning problems.
“I can only assume they were uncomfortable with a blind child not being officially supervised for a whole year when they were legally responsible for him. … But they didn’t know him as well as Meeting Street or as I did. … So we pushed it.” Debby recalled.
They enrolled Jed in the Red Church Nursery School in town. “It was my first assertive act against the system,” she said.
The following September, the Bartons went along with the School Department. If Jed were ever to attend regular school, he needed first to take advantage of the professionals at the Association for the Blind.
At the school in Providence, Jed learned how to be independent—to dress on his own, to eat without help—and to see with his fingertips and his ears and his nose.
During “mobility” lessons, he learned to “trail a wall”—holding a hand in front of him to anticipate obstacles. But there were only four children in Jed’s class, not enough to keep the program going.
In June of 1979, the association shut the school down. The next September, Jed entered the Child-Find class at Sowams Elementary School. It was a small group, with several graduates of Meeting Street School.
The School Department still wasn’t sure if Jed could handle a regular class with 25 kids. The Bartons didn’t argue.
A few weeks after school began, they went to parents night.
Ned looked at the strings of beads, the puzzles the kids assembled, the boxes they stacked.
“Debby, this is the same stuff he’s been doing for the last three years,” he said.
“Oh, please, don’t rock the boat,” she said. “I feel so lucky they’re taking him into the school system. Let’s not start saying. ‘He’s too smart for this.’”
On Nov. 29, 1975, eight days after Jed’s first birthday, President Ford had signed the Education for All Handicapped Children Act. No longer could schools dump handicapped children, regardless of their disability, into “special education” classes: They had to learn with “normal” kids, to join the mainstream.
Two years later, Rhode Island rewrote state law to get in step. Today, regulations that once were written in a couple of paragraphs fill a booklet 38 pages long.
“If I had to have a child who is blind. it’s a good time,” Debby said. “I think of what our family would have been like 20 years ago. I would have had to pack him up and send him off to boarding school by now. What would that have done to him and to us? But now we’re together as we should be.
“I would love to have all those legislators in one room and be able to say to them: ‘You were right. This is the kid you wrote that law for.’”
Debby knew Ned was right about the Child-Find class, but it took a couple of days for her to overcome her misgivings and go back to the school to talk with Jed’s teacher.
She did not make demands; she asked a question. “We’re wondering,” she asked, “if this is challenging enough for him?”
The woman nodded her head but did not answer. Debby went home not knowing what she thought. The phone rang later that day.
“They had taken it up the chain of command at the school,” Debby said. “Apparently everybody had been thinking the same thing, that he was very well prepared in the skills they were teaching in that class. They thought he was ready for kindergarten.”
The change took about two weeks. “They’d bring him in for snack and story and then for snack and story and recess. The other kids were used to him, and he was used to it. It was handled very well,” Debby said.
He was a month shy of his fifth birthday when he entered Mrs. Dwyer’s kindergarten class. The mainstreaming of Jed Barton had begun.
At 8:05 A.M. Debby sits with her boys on the flagstone front step waiting for the school bus.
“All right,” she says, “who has a green sweater on?”
“I don’t know,” Jed answers. “Who does? Me?”
“Yeah, you do. Who has green pants on?”
“Me?” Jed asks.
“Who has a white shirt?”
“Yeah, you do. Who has sneakers on?”
“Me. Me,” both boys say.
“Okay. Who has blue pants?”
“Me?” Jed says.
“Yes, you do All right, so you have blue pants, green sweater, white shirt, sneakers. Bradford, you have what?”
“Blue sweater, green pants and sneaks,” Bradford says.
She goes through this drill every day, in case Jed’s teacher says, “Everyone with blue pants stand up.”
“I don’t know everything there is to know about blind kids,” Debby says. “I know absolutely everything there is to know about this particular 7-year-old blind child, but I don’t know him as an 8-year-old yet. I don’t know where it’s going to go. I just keep trying things.”
She put Braille labels on Jed’s Crayons and his Rubik’s Cube. She wrote story books that emphasize his other senses: “Did you ever take a train ride? Did you ever touch the engine or hear it toot? It’s lots of fun,” she wrote after the family visited Edaville Railroad on the Cape.
Instead of soccer and baseball, Jed took tap dancing. “He loved it. He loves to make noise.” He takes piano lessons—the Suzuki method that trains children to play by ear instead of sheet music. He writes his Valentine cards in Braille.
“Every single step of the way,” Debby said, “I felt there has to be a way he can be part of the mainstream.”
At 8:40 A.M. Jane Long is waiting for Jed when he steps off the school bus in front of Nayatt Elementary School. He is in the third grade.
Mrs. Long, who taught herself Braille after she became Jed’s aide in first grade, stays by his side all day. She Brailles Jed’s lessons and checks his work on the Braille machine he uses instead of pencil and paper. She translates the Braille for his teachers.
“We treat him as any other kid. And that’s the key,” said Principal Robert V. Hassan. “He’s a regular child. That’s it.” He watched Jed walk down the hall, one hand tracking the tile walls and door jambs to his homeroom.
A little after 9 A.M. Jed picks up his Brailler and walks by himself to an empty classroom in the adjoining wing for his Braille lesson with Miss Clarke.
It’s the only time all day he is apart from his classmates.
For 23 years, Mary J. Clarke has traveled around the state teaching blind children, one of two “itinerant teachers of the visually handicapped” employed by the state Department of Education.
For an hour three times a week, she teaches Jed the Braille system. She also taught him how to skip. She works with seven other children in Rhode Island.
“They’re not all Braille students,” she says. “Some use large print, some have special eyeglasses.” There are about 150 children in Rhode Island with severe vision problems, but only a few are totally blind like Jed.
One morning last June, Miss Clarke showed up at school with Jed’s Thorndike-Barnhart Junior Dictionary in the trunk of her car. “It’s 22 volumes,” she told Mr. Hassan. It took five kids to carry it inside.
Educating a child in Barrington costs about $2,500. The cost rises for the town’s 450 disabled children because they usually need special attention—aides, materials, transportation.
Mainstreaming Jed costs an extra $6,500 a year, said Chris Kendall, the town’s director of special education. That is still cheaper than the old way.
If Jed went to Perkins School for the Blind in Watertown, Mass., tuition, room and board would cost the state and town more than twice the mainstreaming price: $15,480 a year.
Debby Barton worries people will resent the extra money taxpayers pay to mainstream handicapped children. But she says, “We can pay for 75 years of institutionalizing these kids or 75 years of Social Security payments. Or we can invest a lot of money in them between 3 and 21 and make them self-supporting. I think that’s the far better thing to do.”
At recess the other third-grade boys run off to play soccer.
“The older they get, the more they go off and play by themselves,” Mrs. Long said. “But he makes his own fun.”
“Let’s go over and watch the cars,” Jed tells her. “You can tell me what goes by.”
They stand at the fence in front of school, cars whizzing by.
“What kind of car was that?”
“A Volkswagen bug,” Mrs. Long says.
“A big truck.”
“Well, what kind?”
“A furniture truck.”
to concede something to the blindness,” Debby said. “He can’t have
the same experience of everyone else all
the time. He is different … but the only thing that’s different about him is his
At 12:57 P.M., Jed leaves Mrs. Vern Kempf’s classroom carrying his Brailler and walks next door for math.
The “Math Stars” of the day are posted on the bulletin board. Jed’s arithmetic, Brailled on brown paper, hangs alongside his classmates’ penciled work.
Math class, Jed’s favorite, will be the scene of another triumph today.
Class starts with a game of “around the world,” a flashcard drill.
In 10 minutes, it is a sudden-death face-off between Jed and Jonathan. The class is at a fever pitch.
“Look at the eyes. Everyone is paying close attention,” Miss Jane Redfern says. “Jed is thinking, too. I can tell. … Okay. Subtraction.”
She holds up a flashcard and reads aloud for Jed’s benefit. “Thirteen minus 8.”
“Four,” Jed screams. Jonathan chews his fingers. “Six,” Jed shouts.
“No,” the teacher says. Jonathan is paralyzed. The process of elimination is at work now. “Five,” Jed says. The champion is offered a choice between a lollipop and a pencil. Jed chooses the pencil.
He returns to his seat, smiling and saying over and over in a low voice, “I won around the world. I won around the world.”
Jed was about 5 when he began to ask questions about his blindness.
“How come other kids can see and I can’t see?” he wanted to know. “How come they can do this and I can’t do it?”
“We told him exactly what happened,” his father said. “We told him that he was born very early and was in the hospital for three months and had a lot of problems and became blind. We just told him the truth. There’s no sense in covering it up.”
“He’s pretty good about it. … And we don’t have those questions anymore really. … Sometimes he says, ‘Why can’t I do that?’ And I say, ‘Jed, ‘cause you can’t see. And he just says, ‘Okay,’ and that’s the end of that.”
Jed doesn’t have photo albums. He has an album of sounds made with a tape recorder.
Daddy starting the car. Daddy driving off to work. Beeping the horn. The lawn mower. The boat. The mailman’s Jeep. Playing the piano. His birthday parties. Christmas.
“When Curtis was getting eye drops, he ran into the room to record him screaming. Once he recorded Bradford getting yelled at. He likes that,” his mother said.
At 3:25 P.M., Jed stands in the shallow end of the Barrington YMCA pool, the afternoon sun bathing his face. He is playing an imaginary keyboard on the tiled edge as the instructor tries to coax a terrified little girl away from the ladder.
On a bench nearby, Lori Newcomb, the Y’s aquatic director, recalls the first time she worked with Jed at summer camp.
“The kids were climbing up something and jumping off … he asked if he could go up there, and I hesitated. But then I thought, why hold him back, if he wants to. … He jumped and wanted to do it again. And from that time on, I knew he could do most anything … because he just wants to.”
There is a free swim when the lesson ends. “Jed, wanna go off the board?” says Pam Goglia, who was Jed’s counselor at summer camp.
He slides almost the full length of the diving board on his bottom before he stands and feels the way to the edge with his toes.
“Should I jump to the right?”
“Straight ahead,” Pam says.
“Ready?” Jed flexes his knees, bouncing lightly and then leaps off. He hits the water feet first, eyes squeezed shut, and disappears. A few seconds pass before his head pops through a circle of bubbles. Blond hair plastered on his forehead, he paddles to the edge, bursting with triumph.
“I — TOUCHED — THE — BOTTOM!”
“I still get a big kick out of it when he does something, and people don’t realize that he’s blind,” Debby said. “I think that’s the big success. He’s so capable that he doesn’t look like a pathetic, dependent kid. He plays the piano, and he rides a two-wheeler, and he swims. … He’s an usher in Sunday School, and he’s in the Cub Scouts.
“We are forcing people to think of him as a regular person. … They deal with him in the boys’ room, in the cafeteria, in recess, on the school bus, and they cease to think of him as that blind kid after a while.
“Everybody responds the way that we do. They find a way for him to be a part of it. He’s being a normal kid, and everyone else around him is being, I think, extraordinary people. …
“I keep holding my breath and crossing my fingers right along. But now I know that it can work. Somewhere along the line, we’re apt to bump into someone who says, ‘Whoa, I can’t handle this,’ and then we just swing into action and say, ‘Sure you can. Look at all the people before you who have.’”
At the dinner table the conversation turns to the theft of a relative’s car stereo. Debby asks Jed to tell the story of an adventure with the next-door neighbor’s car.
“Listen, this is the story,” he says. “I was running to get the lemonade man. I didn’t know Peter’s car was there. I bumped into it and guess what? The burglar alarm went off, and it scared me to death. So I said, ‘My gosh, I’m never going to do that again.’”
“So, Jed,” Ned says, “how did you do in swimming? Did you go off the board today?” “Yep … the last time I did a bellyflop.”
His father guffaws, and Jed laughs, too, imitating his father’s deep laughter. “Did you touch the bottom of the pool?”
“I touched the bottom of the pool at the deep end.”
Since before Jed was born, Ned has dreamed of the day he and his son would go duck hunting together. Jed will never handle a gun, but there are moments he and his father can share.
There is a quiet time before sunrise, Ned says. “You hear the wingbeat of ducks going over you. … Kind of a whistling sound. … It’s early in the morning … still somewhat dark, you hear the ducks, and you look around. You can’t see them, but you hear ‘em.”
meet people who when they hear that he’s blind, feel like disaster has
struck … ,” Debby says. “Most people think living with a blind kid must be the absolute ultimate disaster that could ever happen, but it isn’t. It’s an extremely manageable problem. I don’t even think about him being blind.”
One day last summer, she was working in her garden when she realized she didn’t know where Jed was.
“He was out playing in the neighborhood somewhere, but I had no idea where. I think that would be a jolt to a lot of people, that I am comfortable letting him go off and play, that I don’t even know where he is.”
A little after 8, Jed lies on his Star Wars sheets, the blankets pulled up. His mother pounces, smothering him with kisses and tickling him.
“Mom!” He tries to squirm away. She won’t give in. “Mom … Uncle!”
“Now say Auntie.”
“Mom! … Auntie.”
Debby gives him another kiss and walks out. She switches off the light. In the shadows, Jed’s hand shoots up to his right eye and begins to rub.
“Good night, Jed.” Without looking back, she says, “Put your hand down.”
(Published in the Providence Evening Bulletin, circa 1983.)