In fourth grade Amy started using a talking computer, programmed with phrases that required pushing only a few buttons for Amy to “say” them. There was also a keyboard with a word-prediction program. At recess, all the kids gathered around and tried to get Amy’s new computer to swear. Which made Amy laugh for ten minutes, then start to cry. “PLEASE STOP,” she typed. “NO. NO. NO.”
The talking computer changed how everyone saw Amy. She still drooled and was messy when she ate. Sometimes she got too excited in class and choked on her own spit. But now she sat with other kids in reading and math groups. They figured out that Mrs. Dunphy was right the year before—Amy could read and spell, better than most of them. She wasn’t the best math student in the class, but she was in the top three.
She had good control of the one hand she typed with, but the other went spastic at times and knocked over messy things like hot coffee and boxes of pencils. When she made messes, though, she wasn’t punished like other kids, because she wasn’t like other kids. Her clothes were different. So were the books she read and the shows she watched. So was the fact that she always had an adult beside her.
She’s not really a kid, Matthew decided by sixth grade.
He watched her less by that point because he had his own problems by then. New ones that had cropped up out of nowhere and scared him a little. A voice in his head telling him to do things. Wash his hands twice before lunch, up to his elbows. Wash them again after lunch. His new fears were related—slightly—to his old fascination with bearded ladies and wart-covered men. Freakishness could happen to anyone at any time, he’d learned. Kenny Robinson lost half a finger in an accident with a boat-engine propeller. Now he pointed with his stump, which scared Matthew because lots of things scared him these days. A month before sixth grade started, his parents told him they were getting divorced but he shouldn’t worry because it was a friendly divorce and what everyone wanted.
It wasn’t what he wanted, but he felt too scared to point that out, afraid if he did, it wouldn’t matter anyway.
In seventh grade, he and Amy had English together and once she asked him to help her print an essay. Because he was curious, he sent two copies to the printer and secretly kept one. It was a personal essay in response to the question: What worries you most about the future?
It was a terrible topic for someone like Matthew, who already worried too much. They’d spent the last two days in class reading one another’s essays and offering “feedback,” which meant everyone wrote, “Good job. I like your honesty,” on the bottom of everyone else’s essay. Reading other essays, Matthew had learned that some people were too honest: “What I worry most about in the future is getting fat.” Or else they tried too hard: “I’m most worried about air-and-water pollution.”
Matthew, whose parents had gotten divorced the year before, thought of saying he worried most about his mother, who didn’t do anything besides work, come home, and watch TV. He didn’t write about that because if he were honest and his mother read it, she might get even more depressed than she already was. In the end, he wrote the only thing he could think of: “I worry most about worrying too much.” After such an honest first sentence, he drifted into safe generalizations: “We have grades to maintain, along with family responsibilities. Someday we’ll have to worry about college applications and how we’ll pay for college, if we can get in. After that, I worry about jobs and what the cost of energy will be.”
It went on like that for a few more paragraphs. At the bottom, most people wrote: “Good job, but you might want to get more specific.” He wanted to see what Amy, who had more to worry about than the rest of them, wrote. Was it mean to think this? He wasn’t sure.
Then he read Amy’s essay:
I’m not sure I do worry about the future.
I don’t know what lies ahead but I know I’m not scared of it. I’m in no rush to be an adult, but I suspect when I get there, I’ll discover it’s easier than being a kid. There won’t be so many ups and downs. Or crises that get talked about as if they’re the end of the world. I think we’ll all come to understand that there isn’t any one big test or way to validate ourselves in the world. There’s just a long, quiet process of finding our place in it. Where we’re meant to be. Who we’re meant to be with. I picture it settling like snow when it happens. Soft and easy to fall in if you’re dressed right. I think the future will be like that.
Oh come on, Matthew thought. Was she serious? Was this a joke? Or—he had to admit this felt like a possibility—was she completely crazy? She could barely walk, she couldn’t talk at all, and she wasn’t worried about the future? It made no sense. It made him mad. Amy, who couldn’t walk in snow, imagined a future that felt like falling into it?
Later, when the best essays got pinned to the board of the classroom, he read the comments she got: “Oh my God, this is so amazing!”
“You are an awesome writer!”
Matthew felt small and stupid.
And then last year, at the end of eleventh grade, the whole school got to read one of Amy’s essays when it was printed in Kaleidoscope, the school literary journal. Hers was the piece everyone talked about:
Lucky
By Amy Van Dorn, grade 11
When people first see me, they may not believe this, but most days I don’t feel particularly disabled. In the ways that matter most, I believe I am more blessed by good luck than I am saddled by misfortune. My eyes are good, as are my ears. I’ve been raised by parents who love me as I am, which means that even though I can’t walk or talk well, I’m reasonably well adjusted.
I know that for a teenage girl in America, this is saying a lot. I don’t want to be thinner than I am, or taller. I don’t look at my body parts and wish they were bigger or smaller. In fact—and this will surprise many people—I don’t wish I was fine. I don’t pine for working legs or a cooperative tongue. It would be nice not to drool and warp the best pages of my favorite books, but I’m old enough to know a little drool isn’t going to ruin anyone’s life. I don’t know what it would feel like to be beautiful, but I can guess that it makes demands on your time. I watch pretty girls my age and I see how hard they work at it. I imagine it introduces fears I will never experience: What if I lose this? Why am I not happier when I have this?
Instead of beauty, I have a face no one envies and a body no one would choose to live in. These two factors alone have freed up my days to pursue what other girls my age might also do if their strong legs weren’t carrying them to dances and parties and places that feed a lot of insecurities. Living in a body that limits my choices means I am not a victim of fashion or cultural pressures, because there is no place for me in the culture I see. In having fewer options, I am freer than any other teenager I know. I have more time, more choices, more ways I can be. I feel blessed and yes—I feel lucky.
Reading it the first time, Matthew felt angry all over again. Surely she didn’t really feel this way. He thought about her seventh-grade essay where she said she wasn’t worried about the future. Here she was again—the unluckiest person he could imagine—saying she felt lucky? It had to be an act.
But he wanted to know: Why did she work so hard at it?
In English, Ms. Fiorina, famous for wasting class time discussing issues that were never on any test, asked what people thought of Amy’s essay. Because Amy wasn’t in their class, they were honest. One girl raised her hand. “It made me want to cry. If I had her problems I’d probably kill myself.”
“Maybe that’s a little extreme, Paula, but that’s her point, right? When you’re a teenager being different—if it’s not by choice—seems like the worst thing imaginable. But is it really?”
“But she’s not just different. She can’t talk.”
“I saw her choke once,” Ben Robedeaux said without raising his hand. “It was really weird. She fell out of her chair and had like this seizure.”
Matthew was surprised. He’d never heard that story.
A few minutes later Ma
tthew raised his hand. Usually he didn’t participate in these discussions, but this time he had something he wanted to say. “I’ve known her a long time and I don’t think she really feels this way. She wants everyone to have this image of her as happy and well adjusted. I just don’t think it’s true.”
“Interesting,” Ms. Fiorina said, looking up like what he’d said really was interesting. “But is that a bad thing? She’s a person with a disability conveying the message, Hey, my life isn’t all tragedy. Do we hear that message enough?”
“But it is a tragedy,” a girl in the back row said. “I mean, I’m sorry, but it is.”
“Explain what you mean, Stacey.”
“She can’t talk.”
“But she communicates, right? She writes beautifully and some of you have had classes with her, right? You know her pretty well. Matthew says he doesn’t think she’s telling the truth. Maybe he knows something the rest of us don’t.”
Matthew felt terrible. He didn’t know, of course. He only knew Amy after years of watching her from a distance. That year he sat behind her in Biology and had discovered a few new quirks to her body. The left side was more spastic than the right. Her floppy head made her look worse than she was. He learned to interpret the sounds she made. He knew she loved the cell unit, because she squealed every time the overhead projector with “Parts of the Cell” came up on the screen. She also liked genetics, but not physiology. On frog-dissection day, they both let their partners hold the knife—Amy for obvious reasons, Matthew for less obvious ones.
The next day in Biology, Amy surprised him by turning around at the end. “COULD I TALK TO YOU AFTER CLASS?” her computer said.
He’d heard her automated voice often enough in class discussions, but it still scared him. “Okay,” he said, looking down at the floor.
When they got out to the hallway, Amy pushed a single button to play a preprogrammed question. “WHY DID YOU TELL PEOPLE MY ESSAY WASN’T TRUE?”
“I don’t know,” he said, breaking out in a sweat. “Because I don’t believe it. I don’t believe anyone could be so well adjusted.”
She typed. “WHY NOT?”
“You said you look at your friends’ lives and feel like your own is better, which is fine, except that you don’t have any friends.”
“HOW DO YOU KNOW THAT?”
“I sit behind you. I notice things.”
“WHAT KIND OF THINGS?”
“It’s not your fault that you don’t have any friends. You always have an aide with you. No one is going to be themselves when there’s a teacher standing right there. Plus, you talked about parties and dances, but I don’t think you’ve even been to any, so how would you know what you’re not sorry to be missing?”
He kept going. He started saying too much, telling her all the things he’d noticed—that she never said hi to other kids, that she never answered questions when people asked her things before class. “I’m not pretending I’m Mr. Popularity or anything. I’m just saying you’ve got this whole message that doesn’t seem believable. To me, anyway.”
“I CAN’T BELIEVE YOU’RE SAYING THIS.”
Her facial expressions were impossible to read. He couldn’t tell how mad she was. Probably pretty mad. “I’m sorry. You’re right. I shouldn’t have said anything. It’s none of my business. Like, none at all. I don’t know why I just said all that. I had this theory that you’re trying to be a certain kind of person, and that must be hard. But God, I’m hardly one to talk. So let’s forget the whole thing. Please. I’m sorry.”
It startled him when her machine blurted out a single word. “NO!”
“No what?”
“DON’T BE SORRY. YOU’RE RIGHT. MY GOSH, I CAN’T BELIEVE HOW RIGHT YOU ARE.”
UNCORRECTED E-PROOF—NOT FOR SALE
HarperCollins Publishers
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CHAPTER THREE
EVERYTHING CHANGED FOR AMY after that conversation with Matthew.
For most of her school life, Amy had felt a little like Rapunzel, locked in the tower her walker created when she walked down hallways. In eleven years, no one had ever called up to her window or asked for her hair. No one had ever tried to be her friend.
Impossible, you might say. Everyone has some friends.
No, Amy would have to say. Not everyone. It was possible to spend a decade with the same children—from kindergarten through eleventh grade—and never receive a phone call once, though your number was listed every year in the directory. It was possible to have a mother who tried for years to schedule play dates with other children of mothers who never called her back or did so with apologies and talk of impossibly busy schedules. It was possible to be partnered on a school project and watch others build a Pueblo Mesa out of brown-painted mini marshmallows, a project you were never, in two weeks, allowed to touch.
Most surprising of all: it was also possible—for eleven years!—not to see this as a problem.
Or to put it another way: it was possible to believe that the adults who loved her—the teachers, therapists, and aides who laughed at everything Amy said—counted as friends. It was possible to feel their love so strongly that she lived in oblivious happiness for over a decade.
Then Matthew came along and pointed out the holes in her thinking. He stood in front of her and told her he’d come, not to climb her tower but to shatter it. In his clumsy way, he was like a prince who arrived with sweaty armpits and bad hair. At least I’m here, he might have said. That’s better than nothing. And it was.
The very same day that she talked to Matthew, she went home and made some decisions: It was too late to do anything about it that year. But next year—her senior year—would be different. She would make friends before she graduated. She would look at her life with a more critical eye.
When he’d insisted that she couldn’t be as happy as she pretended to be in her essays, he’d said something she’d never considered. You don’t have any real friends because no one acts like themselves around you. You’re always with an adult. For years Amy had blamed her lack of peer friendships on any number of factors: Typing was slow. She’d try for a joke that came out five comments too late to be funny. She was too clumsy to play at recess, too messy to eat lunch with, too slow to keep up. Until Matthew pointed it out, though, this idea never occurred to her: being with you means being with a teacher.
It was so obvious, she wanted to laugh. Get rid of the adult and you might make some friends.
That conversation opened up electrifying possibilities in her mind. Just because she’d never had friends didn’t mean she wasn’t interested in her classmates. Since she started middle school, she’d developed a habit every year of picking a different handful of peers to spy on and keep track of. Usually she picked one surly type (a troublemaker to see how much trouble they got in); a do-gooder to see if their phony persona broke down; a boy she might have had a crush on in a different life; and a shy girl like herself (or the person she would have been if she could walk and talk). She memorized their schedules and their lockers. If they were in a play, she went for the uninterrupted two hours she could spend watching them. So far as Amy knew, no one she’d kept tabs on knew what she was doing. Of course, she’d never talked to any of them, so she couldn’t be sure. Which was why that conversation with Matthew floored her.
The shock wasn’t his saying such unpleasant truths out loud. The shock was his saying, I’ve watched you over the years. She couldn’t help it; she blushed.
Then he kept going: You don’t even try to talk to people. You walk past them without saying hi. You don’t answer questions. You laugh when no one is making a joke. He pointed out every social failing she had. Ten years without practice had left her with plenty. It didn’t embarrass her to hear it; it thrilled her.
He’s just like me, she thought. He does the same thing.
Matthew had never been one of her chosen people, but he could have been. He was for the
remainder of their junior year. Until she decided she wanted more for next year. She wanted to make some friends. She wanted to get to know Matthew.
The law mandated every child with a disability have equal access to the same education all children had, meaning that—to some extent anyway—an aide had to do whatever Amy needed. They bubbled her answers on Scantron tests, changed her sanitary napkins, helped her get in and out of the bathroom with a minimum of fuss. But that conversation with Matthew helped Amy say something she wanted to tell her mother for months. “I DON’T NEED SOMEONE ALL THE TIME.” Amy took class notes herself and kept her own schedule. She needed someone in between classes to carry her books and charge her battery pack, but in class, not so much.
Her idea had a beautiful simplicity at first. She approached her mother a week after school ended. “WHY DON’T WE HIRE STUDENTS TO WALK ME IN BETWEEN CLASSES?” They could get trained on charging her battery and other details. Girls could help her with the bathroom; they had in the past. Boys couldn’t, of course, but that wouldn’t matter. She could drink less on those days and improvise more. Having gotten the idea, she wanted to make it clear to her mother: boys should be hired, too. “WE’LL SET A SCHEDULE AND ROTATE. MAYBE WE’LL MAKE EATING LUNCH PART OF IT SO I’LL MAKE SOME NEW FRIENDS.”
For years Amy had eaten her yogurt-and-hummus lunches in the Sp-Ed teacher’s resource room. Fine for the dribbling girl who had to wear bibs because she still dropped food all over herself, but now she was better. She could eat simple things in front of other people. Her stomach danced at the thought. She could eat in the cafeteria! All they had to do was pay people to sit with her!
Say What You Will Page 2
