When author Cammie McGovern's oldest son was diagnosed with autism, she looked for an outlet where he could be with other children with similar difficulties. That led her to form the group "Whole Children," an after-school and weekend program for children with disabilities.
"Having been surrounded by all these terrific teens with disabilities and seeing how much they wanted relationships and love as much as their typically developing peers, it felt like time to write a story about that," McGovern told Here & Now's Robin Young.
"Say What You Will" tells the story of two teens: Amy, a girl with cerebral palsy, and Matt, a young man with obsessive-compulsive disorder (OCD), whose friendship becomes complicated by romantic and sexual feelings.
Interview Highlights: Cammie McGovern
On how McGovern's son helped inform her characters and book
"My son is very recognizably autistic. Then he hit puberty and had these very surprising — after his father and I had finally adjusted to and accommodated everything about having a very autistic kid — very typical in rebellion, in desire for independence, and desire for romance."
On the theme of sex present in the book
"I wanted to not back away from that issue, because that's also part of it. It needs to be increasingly a part of the education for disabled kids, I think. Their sexuality is very present and I wanted that to be in the book as well, because it needs to be more so for disabled teens."
On whether her son will find love, as the character based on him did
"It will look different than what the rest of us have, but it will be real."
"I don't know if it will [happen] for him, but I want it to be more possible and then have love take on different faces. It might not appear the way it does for many of us, which is often the way — when parenting a child with disabilities you have a whole period of mourning the loss of the life you thought you would have. And then there's something new that comes along and it's very different, but it's still full of joy. And so it could be that he will fall in love in some fashion and marry or join with somebody some day and it will look different than what the rest of us have, but it will be real."
Book Excerpt: 'Say What You Will'
By Cammie McGovern
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 SO I’LL MAKE SOME NEW FRIENDS.”
For years Amy had eaten her yogurt-and-hummus lunches in the special-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!
Her mother hated the idea at first. “You don’t know how self-absorbed teenagers can be. They’d have a test one day or breakup with their boyfriend and forget all about you.”
“WE COULD HAVE A SUBSTITUTE LIST. WE’LL TRAIN LOTS OF PEOPLE. AND PAY THEM MORE THAN THEY MAKE AT McDONALD’S.” Amy had once overheard two girls talking about how much they hated their jobs at McDonald’s, with the terrible uniforms and the rude customers.
“You don’t pay people to be your friend, Amy. I don’t like what that suggests.”
Amy pressed harder. “KIDS NEED JOBS. I HAVE ONE THEY CAN DO.”
As it turned out, nothing was as easy as Amy imagined. The school said they would only pay for a “trained paraprofessional,” but if her parents were willing to cover the salaries and sign a waiver, they would try the idea as an experiment.
Over the summer, Amy drew up a schedule where people worked a total of two hours a day, three if she stayed after school to join a club.
“A club?” her mother groaned.
“THAT’S MY GOAL. I WANT TO JOIN A CLUB AND MAKE TEN FRIENDS.”
Nicole loved goals. She loved evidence-supported theories and data-driven techniques. Say the word goal, Amy knew, and her mother would be looking to check it off.
At least this used to be true. This time, though, her mother surprised her. A shiny line of tears appeared in Nicole’s eyes. She shook her head. “Did we make some terrible mistake? Did we not prioritize socialization enough?”
Yes, Amy wanted to type. We never prioritized it at all. Not when academic successes came so easily. Why bother with friends when there were As to earn and statemandated tests to ace? Why bother with movie outings when Amy had such a knack for languages that her French teacher once joked that she’d be nonverbal but fluent in three languages before she graduated? Amy filled every summer with extra courses and reading because it never occurred to her she had any other options. “YES, MOM. I NEED TO MAKE THIS A PRIORITY.”
She thought about Matthew, a little taller than her, with freckles and curly, dark brown hair that fell in his face, sweating as he argued his point: You’re not really lucky. Get out more and you’ll see. It’s a hard life out here. She almost laughed out loud remembering it, and then had to catch herself. Her mother would hate this being another person’s idea. You’re not like other children, Nicole always said. You don’t need to act like them, so please don’t.
A far better argument, Amy knew, was this: “IF I’M GOING TO GO TO COLLEGE, I NEED TO PRACTICE RELATING TO PEOPLE MY AGE.”
College had always been the number one goal. Ivycovered walls. Dorm mates. Nicole had talked about it since Amy was in elementary school. “You might be right,” her mother said. “This might be more important than I thought.”
Over the summer, a letter was mailed by her guidance counselor to a small group of handpicked students, mature enough for such a job. When response was low, another letter went out to a wider group, including all student council members and everyone in the leadership society, meaning anyone with a B plus average or better.
That was when Amy first wrote to Matthew and urged him to apply:
I promise you won’t have to do anything embarrassing. I want you to apply because I want someone who will talk to me honestly about things. You’re the only person who ever has. Maybe you don’t know this, but when you’re disabled almost no one tells you the truth. They feel too awkward because the truth seems too sad, I guess. You were very brave to walk up to the crippled girl and say, essentially, wipe that sunny expression off your face and look at reality. That’s what I want you to do next year. Tell me the truth. That’s all.
Excerpted from the book SAY WHAT YOU WILL by Cammie McGovern. Copyright © 2014 by Cammie McGovern. Reprinted with permission of HarperCollins.
This segment aired on July 9, 2014.