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On Being Sarah

ALBERT WHITMAN & Company

Talk to Me, Not about Me!

Sarah moved her wheelchair closer to the big picture window in the Bennett living room. There! She could watch everything that went on in the street. Sarah loved to see how people walked. A man went by briskly, with long, hurried strides. A woman pushing a baby carriage dragged tired feet. A child skipped, laughing. People did this every day, without even thinking about how their legs took them wherever they wanted to go. Well, it would take more than thinking to make her legs move. She gave her knee a disgusted poke with her good left hand. Those legs. They looked all right, like anybody's, but they were no use to her, none at all. And they'd been like that all of her twelve years.

Today, Sarah's sister, Amy, just two years older, had promised to bring home her friend Sue, after they had lunch and a swim at Sue's house. Amy had told Sarah so much about Sue. "She's pretty," Amy had said, "and she's a marvelous swimmer."

It was some time since Amy had brought anyone home. Summer vacation days could be long and dreary for Sarah. There was no school, and her mother was busy with housework.

"Why don't you bring Sue here?" Sarah's mother had asked Amy.

"She wants me to go to her house," Amy said. "Besides, she has a swimming pool."

"Ask her."

"Oh, all right." Amy had seemed uncomfortable with the idea.

She doesn't want Sue to see me. I'm that little sister who has cerebral palsy and can't walk, Sarah couldn't help thinking.

There they were! Amy came walking up the street in her usual sturdy way, now and then tossing her long, dark hair back from her face. I'd know my sister a mile away, Sarah thought. The girl beside Amy walked quite differently, putting down each foot daintily, as if the sidewalk might hurt. Her hair was different, too; yellow curls clung close to her head.

Then they were in the house and coming towards her.

"This is my sister, Sarah," Amy said, almost in a whisper, as if she didn't want to say it.

"Hello, I'm Sue," Sue said.

Sarah had never seen anyone so beautiful. Big blue eyes gave Sue's face an expression of wonder, and her skin was soft and pink. Her shorts matched her eyes, and her T-shirt had flowers printed all over its front. Sarah wanted to touch her, but she wouldn't dare.

Sue seemed to be waiting for her to say something.

"My sister can't talk," Amy explained, and Sarah felt Amy didn't want to say that, either.

Sue stared. "Why can't she talk?"

"She was born that way," Amy said.

"That's terrible, not being able to talk. I never heard of that happening to anybody." Sue stood stiff and tense.

"It hardly ever does," Amy said.

Sarah had been through this so many times. People talked about her as if she weren't there, or as if she couldn't hear. Sarah managed to keep from crying out in protest. She didn't want to touch Sue, not anymore. She just wanted to get away from there.

But as she pushed the switch on the arm of her wheelchair and started to move away, Amy said, "Don't go, Squib! I want you to show Sue your symbols."

Sarah let go of her switch. All right, maybe after all, Sue could see she had something to say.

"Look, Sue," Amy was saying. "She has these symbols. If you watch, she can tell you nearly anything without speaking a word."

"Are those the symbols?" Sue asked, looking at the board that covered Sarah's wheelchair tray. It was divided by lines into many small squares. In each square was a drawing made of lines and circles, and above the drawing, a printed word.

"Those are Blissymbols," Amy said.

"That's really neat," Sue said. "Tell me something, Sarah."

Sarah wasn't sure she had anything to say to Sue, after all. She pointed to a single square near the top of the board.

"'Hello!'" Sue was reading the word above the symbol. "How come that says 'hello'?"

"It's a mouth — see?" Amy said. "That little circle. And arrows coming together."

0->-<

"When arrows go the other way, it means 'goodbye.'"

0->-<

"That is neat!" Sue exclaimed.

Sarah could talk pretty fast with her family and her teachers because they already understood the symbols. It was much slower with someone who had to read the words, too.

She was trying to think of something else to tell Sue when Amy said, "Show her some of the first symbols you learned."

Sarah pointed to "OK," which was printed separately at the top of her board because she used it so often.

"They look like what they're supposed to be!" said Sue.

"Lots of them do," Amy said.

"Why doesn't she just point to words?"

"Symbols are quicker. Besides, when Sarah first learned them in school she couldn't read."

"Can she read now?"

"Sure. Sometimes she spells out words if she hasn't got a symbol for what she means. See — she has all the letters of the alphabet, there, across the top of the board."

There they were again, talking about her as if she weren't there. Sarah had hoped she would have a real conversation with Sue, the way she did with Amy. Maybe they could even play a game together. Now she could see that wasn't going to happen. Oh well, then she wouldn't even listen.

Amy and Sue were talking about playing games at school. Sitting right where she was, Sarah took herself away from there, in her mind — as she knew so well how to do. When she was younger and couldn't talk with symbols, she had spent long hours daydreaming, alone in her own world. She could still dream herself away when she needed to.

Now, in her mind, she was back at her old school, where she had learned symbols and so much besides. Every child in her class — there were just six, including herself — was in a wheelchair, and not one could speak clearly enough to be understood. It had been hard at first. They all tried to say things. Instead, they made noises, blinked their eyes, waved their hands, shook heads yes or no — if they could. And the teachers gave them pictures to point to — a glass of water to mean you were thirsty, a sandwich for being hungry, the toilet if you needed that, and so on.

Before she had gone to school, Sarah had not been sure there was anyone else like her in the whole world. A woman named Mrs. Brady had come to the house twice a week to give Sarah exercises, and she used to talk about other children she worked with. These children had never seemed real to Sarah. She had never seen any children like herself. She had been just a baby, even when she was five years old. No one, perhaps not even her parents, expected her to grow up properly. Surely she would just go on making those noises, saying, "Agghh!" when she tried to talk. She would watch the world around her without ever really being part of it. The questions she kept asking inside herself would hardly ever find an answer. She was nobody.

She remembered how it had been when she was younger. There had been so much she wanted to say. Words tumbled around in her brain, waiting to be spoken. She had heard these words a thousand times as her mother said them, her father, her sister — everyone. She could not speak a single word to them. Over and over again she would try to make the sounds to say a word. She would shudder inside when she heard the noises that came out, no words at all. Sometimes she would put her head down on the tray of her wheelchair and cry. There was no way, though, that she could ever stop trying to speak; she was driven.

Then she had learned to talk with symbols. It was like waking up from a long, dim daydream and discovering the world. The thoughts and feelings she had hidden inside herself could come out because, as her teacher said, "Symbols do what talking does." She could ask questions and get answers — what a difference that made!

Of course, she would never get out of that wheelchair, never speak an understandable word with her voice. She knew that. But she was growing up, the way all children do. She was Sarah Bennett, and she was going to be somebody in this world. Going to school and learning symbols meant that much to her.

She knew she would miss the old school, Ingleside. It hurt even now to recall what her friend Paul had said to her in symbols on her last day there: "You are my always friend." She had gotten her wheelchair as close to his as she could and had given him a hug with her good arm.

Sarah's teacher had told her that Paul's family would be moving to another city. She would probably never see him again.

Now, in a few weeks, she would be going to sixth grade in Jacobson School, just down the street. This was the middle school where Amy had gone before high school. Amy had been eleven years old in sixth grade. Sarah was twelve; getting started in school had been harder for her, so it took longer.

Sarah had chosen Jacobson herself; she wanted to go to a regular school, like anyone else. And instead of traveling a long way from home in a special van, she would go to school by herself, straight down the street in her wheelchair.

Her mother appeared in the doorway. "How about a snack, you three? Sarah and I made chocolate chip cookies this morning."

That was so like her mother, always reminding people that she, Sarah, could do things other people could do. She turned her wheelchair towards the dining area.

Sue was saying, "Mm-mm, that sounds good," as they gathered around the table, Sarah on the side where she could fit her knees underneath.

"Fresh apple juice from Pierce's orchard," Sarah's mother said as she poured a glass for everyone. And right in the middle of the table was a big plate of those chocolate chip cookies. Her mother put one on Sarah's wheelchair tray.

"Can she eat all right?" Sue asked.

Sarah's mother paused with the plate of cookies in one hand and looked at Sue. "Ask her," she said.

"Of course she can," Amy answered Sue.

"Let her show you," her mother insisted.

No one spoke for a while after that. Sarah wished Sue wasn't there. She drank apple juice through a long straw and bit into her cookie. It didn't taste as good as she had thought it would.

When they had finished eating, Sue said it was time for her to go home, and Amy offered to walk her down to the corner. Sarah and her mother sat alone at the table.

"Don't mind Sue," her mother told Sarah. "She just couldn't think what to say."

Sarah chewed on another cookie, slowly, hardly tasting it. It seemed that people who could talk still didn't always know what to say. And they didn't know how to speak to people like her. They had this wonderful gift of spoken words, and sometimes they used it in ways that hurt other people.

"I love you, Kitten," her mother said and gave her a quick hug. "Remember when I used to hold you on my lap and sing lullabies? You're too big now."

"Too big now," Sarah said in symbols, and she meant not just that she seemed bigger and heavier, but that she felt more grown up inside. And then, while her mother watched her board, she pointed first to her mother's picture in the row of photographs of family and friends, and then to symbols:

love you, too

??

When Amy came back, her mother had words for her. "Look, Amy," she said, "you ought to be careful how you talk about Sarah when your friends are here. They may not know she can hear, but you know. She wants you to talk to her, not about her. You do it, and they'll get the idea."

Amy shrugged. "Maybe I shouldn't bring anyone home."

"That's not fair. Sarah needs to get to know other people, too."

Sarah banged on her wheelchair tray with her good left hand. They were doing just what her mother had said not to do, talking about her as if she couldn't hear or weren't even there.

They didn't pay any attention, so she banged again.

"Oh, that Sarah!" Amy was saying, and she made a face. Sarah just sat still.

"Look, Amy," her mother said, "it is hard. But we all have to help."

"I do help, Mama," Amy protested. "I help all I can."

"I know you do. You've been wonderful. Perhaps I'm asking too much of you."

The front door slammed. Sarah's father was home early.

"Hi, Poppa!" Amy called, and she ran to him.

Sarah pushed her switch again to start her wheelchair going.

"Hello, Father!" she wanted to say, and she pointed at symbols. But he wasn't near enough to see, and she would never get to him as fast as Amy.

She Ought to See More of the World

The next morning, Sarah woke early and opened her eyes. In the dim light, she looked around at the familiar things that meant home to her. White ruffled curtains stirred in the breeze at the open window. A yellow cloth duck her Aunt Laura had made for her years ago sat on the shelf. Beside it were her books; she knew them, even across the room, by their shapes and colors. Her mother used to read these to her. Now she could read them herself.

On another shelf sat Sarah's portable tape player — her "boom box." She remembered how Amy had looked and looked in different stores until she found one Sarah could hold and work with one hand at the same time. And it was small enough to fit in beside her on the wheelchair. There was a pile of tapes beside the player, all without their cases, because that was easier for Sarah. Amy had thought of that, too.

Sarah's clothes for the day had been laid across the back of a chair — underpants, her favorite jeans, a red T-shirt, and red socks to match. Beyond the chair was the white door that led to the hall, shadowy in the early light, from where her mother would come to get her ready for the day.

She closed her eyes and just listened. Earlier in the summer, robins had raised a family in the tree outside her window. Some of them still slept there. Their waking pattern always repeated itself: A lazy peep; a pause; then another peep, and another. And at last a real birdsong. Over and over, the same things happened in the world. Birds and animals and people were born, and their mothers took care of them. Birds grew up quickly and made more baby birds. People were much slower; they needed their mothers longer, but then they had time to discover who they really were.

She opened her eyes again and looked straight up. It was brighter now. Sunlight and leaf shadows made dancing patterns on the ceiling. And again came that birdsong, somewhere in the whispering leaves.

She had to go to the bathroom. That was enough to take her out of a daydream. There had been a time when she would try to get out of bed herself. Push, she would tell herself, move that leg, lift yourself. Push. Mrs. Brady would try to get her to do that when she came to do exercises with her. It had never worked. Yet it had been a long time before she could give up hoping that someday, by some sort of magic that would come in the night, she might be able to walk.

She had to go to the bathroom.

"Mama!" she tried to call, and of course, "Agghh" came out instead of words. Her mother appeared in the doorway, dressed in a long blue nightgown.

"Hush, dear, I came as soon as I could."

Sarah cried out with all the voice she had. But then she was held close against her mother, and warmth and comfort chased away the anger.

"All right, Kitten," her mother said. Gently, she let Sarah fall back onto the bed. The wheelchair stood against one wall, with its batteries plugged into an electric outlet for recharging overnight. Sarah's mother unplugged it and moved it close to the bed. Then, grasping Sarah tight around the middle, with a quick twist she heaved her into it.

Down the hall to the bathroom. Sarah's mother pushed the wheelchair next to the toilet, slid Sarah onto it, and supported her back with one arm.

"There now," she said.

Another day was starting for Sarah.

Sarah's mother quickly pushed Sarah's arms into the sleeves of a pink robe that had been hanging on the back of the bathroom door, wrapped it around her, and fastened the wide strap that held Sarah upright against the back of the wheelchair. Then she hurried to get herself dressed and make her way down the hall to the kitchen. Breakfast was a busy time.

Sarah, meanwhile, wheeled herself close to the bathroom sink and washed her face with her good left hand. She pulled a comb out of the bag that hung from the arm of her wheelchair and ran it quickly through her hair. Her mother had put a mirror on the wall, at sitting level. Sarah looked. Brown eyes, plain, round face. And her hair — brown curls sticking out every which way. She tried again with the comb. Another look — better. That would have to do.

When she reached the dining area, the rest of the family was already settled for breakfast. Her father peered at her over the newspaper he was reading, but he did not say anything. Amy was bent over a hot cup of cocoa, blowing on it. Her dark, straight hair nearly hid the cup.

"Hiya, Squib!" she called out cheerfully, as she tossed her hair back.

Sarah waved at Amy, appreciating the love that came with being called Squib.

"Soft-boiled egg, anybody?" their mother asked.

"No time, Ma," Amy said.

Her father spoke for the first time. "Why don't you help your mother with breakfast?"

Amy mumbled into her cocoa, "In a hurry, got that Girl Scout trip."

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Excerpted from On Being Sarah by Elizabeth Helfman. Copyright © 1993 Elizabeth Helfman. Excerpted by permission of ALBERT WHITMAN & Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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