February 24, 2018

The Advocate's Toolbox

The Illusion of “Normal” | SLJ Chats with Cammie McGovern About ‘Say What You Will’

Cammie McGovernCammie McGovern (sister of Downton Abbey actress Elizabeth McGovern) has already made a name for herself as the author of several well-received adult books, including The Art of Seeing (Scribner, 20012) and Neighborhood Watch (Viking, 2010). Her first novel for teen readers, Say What You Will  (HarperCollins, 2014), is about a subject that’s close to her heart. The founder of Whole Children, an after-school organization for children with special needs, and the mother of a teen with autism, McGovern aims to fill a gap in young adult literature with her latest work—featuring complicated, fleshed-out characters with disabilities who live, fall in love, and make mistakes just like anyone else.

In our review, School Library Journal said about Say What You Will: “The harsh reality of high school social dynamics are authentically portrayed. Recommend to fans of John Green’s The Fault in Our Stars (Dutton, 2012) and realistic fiction with a love story angle.” In the following interview, McGovern shares with SLJ about her inspiration for the novel, diversity in YA lit, and what she’s working on next.

What inspired you to write Say What You Will?

The short answer is: my son Ethan, who is now an 18-year-old high school student with autism, cognitive disability, and a few miscellaneous gastrointestinal issues thrown in. Through him, I’ve gotten to know a lot of teens with disabilities and I’ve come to realize—with some frustration—how few portrayals we see of characters with disabilities in books, TV, and movies.  In 2012, the US Department of Disability reported 1.2 million teenagers between the ages of 16-20 living with a disability severe enough to impact their ability to live independently as adults. Over a million!  It’s—by far—the largest minority group in the country. Think about how rarely we see or read about complicated, fleshed-out characters with disabilities.

Because we’ve had so few stories to help us imagine their lives, even I’ve been surprised (and I’ve lived with my son all his life!) by how “normal” some of his development is. The day he came home from school and announced that he needed a suit and a corsage because he wanted to ask “his girl” to prom was a breath-catching eye-opener to me.  What girl? What prom? Ethan wants a girlfriend? I thought, getting a little teary because the answer is so simple. Of course he does. They all do. We need to start imagining fuller lives—with love, activities, passions, and work—for teens with disabilities so they (and their parents) can start picturing it too.

This unique novel follows two teens living with very real “issues” that real teens live with every day. What kind of research did you conduct to get the voices of young adults with cerebral palsy (CP) and Obsessive-Compulsive Disorder (OCD) so authentically pitch-perfect?

Though I live with disability every day, neither one of these characters is based directly on anyone I know.  Matthew’s voice came very quickly to me when I read an old-but-still-classic book about OCD, [Judith L. Rapoport’s] The Boy Who Couldn’t Stop Washing (Dutton, 1989). In the 20 years since that book was published, we’ve come to understand that OCD can take many different forms, which meant that I read quite a few memoirs to get a better feel for what having an ominous, dictatorial voice in your head feels like. I continue to be fascinated by the way OCD impacts people who are otherwise (very often) completely rational, intelligent, and highly accomplished people. It’s the “mental illness” that affects the sanest people in the world, which I find fascinating.

I based Amy in part on an old friend of Ethan’s (and prom date!) who was born with such severe CP that her parents were told she would never walk or talk.  Thanks to aggressive early intervention, she does both now, and even danced beautifully in her pink prom dress! Amy’s thoughtful philosophy toward her own disability owes something to the great writing by Harriet McBride Johnson, who wrote one YA novel, a collection of essays, and a fabulous article that ran on the cover of the New York Times Magazine about 10 years ago. Adult readers may remember the extraordinary photo of her—a muscle-withering disease left her with a twisted spine, folded up in a wheelchair, yet her gorgeous smile spoke volumes. Though she is gone now, her writing should be read by anyone interested in voices of the early disability movement. I especially love the way she writes about beauty and love and life in a body like hers, which everyone looks away from.

Say What You WillIn a speech for her Public Speaking class, Amy states, “I have learned that many people have disabilities they must make peace with,” even able-bodied people. In your novel, characters, both primary and secondary, struggle with their own limitations—whether able-bodied or not. How do you think or hope this message will resonate with readers?

One of the first things I cried about after my son was diagnosed was the absurd thought:  “Now I’ll never be a soccer mom!” It was almost instantaneously follow by a feeling of relief. “Hey!  Now I’ll never have to be a soccer mom!” Disability frees every family it touches from the burden of “looking normal” or modeling themselves on conventional definitions of success. It’s liberating for parents and, I think, liberating for Amy. She doesn’t “look fine,” so why bother working to perpetuate some illusion that she is? I suspect that for many teenagers, maintaining that façade of normalcy is the hardest thing they do. As Maya Angelou said, “If you are always trying to be normal, you will never know how amazing you can be….”

Which protagonist do you identify with most in this novel?

Oh, I wish I’d been more like Amy as a teen—fearless and unafraid to speak her mind. Unfortunately I was far more like Matthew—tentative about imagined “ramifications” of all my actions.  I didn’t get more outspoken until far later in life, when I realized how much fearfulness gets in the way of getting anything done.

I found your use of the third person narrator so refreshing, especially with such a plethora of YA novels that are usually written from the first-person. What motivated you to make that choice in how you told Amy and Matthew’s story?

I had a teacher in graduate school who insisted that there’s no difference, emotionally, for the reader between a first person narrator and a close third person narrator. (“We’re still inside their head. They only difference is the pronoun “I” or “she.”) I always believed that was true until a read a few reviewers on Goodreads talking about what a hard time some readers have connecting with third-person narration. It’s an interesting lesson for me. I suppose I chose third person because I assumed writing in first person would get too confusing when the narration goes back and forth between two people. For some people the reading experience must be visceral—third person simply feels more distant.

You helped found Whole Children, an organization for children with special needs. Did you work with that organization inform upon Say What You Will?

After Ethan was first diagnosed at the age of three, the best thing I did (though I didn’t realize it at the time) was get together with a group of other mothers of kids with disabilities and start a center to run after-school classes and weekend programs for them. It was incredibly hard work at first, but it was also—from the beginning—amazingly successful. Families came in droves, looking for community and a place where their child would be welcomed. I’ve stayed involved for over 10 years because Ethan needs it, but I do as well. I find myself rejuvenated and inspired every week, sitting in the lobby watching the way kids with extraordinary challenges get on with the business of having a life.

Though no generalities apply to all kids with disabilities, I might offer this observation. Kids with disabilities often tend to have GREAT PASSIONATE interests.  Anyone who knows a child with autism will recognize this, but I notice it in many kids with disabilities. They may have trouble seeing a page of print, or walking by themselves, but boy, they have things they love to talk about. I believe Whole Children helps them celebrate those passions and discover new ones. This inspires me no end because I’ve come believe the real kernel of joy lies in caring a great deal about something, even if the rest of the world rolls their eyes a little about it.

Are there any projects that you’re currently working on that fans should be looking forward to?

I’m finishing a new book that’s set in a community center like Whole Children where two typically-developing teens are volunteering in a “Sexuality and Relationships” class for young adults with disabilities. I also have a middle-grade book I’ve finished which is very near and dear to my heart as it’s the closest thing I’ve done to writing about my own little family.

out of my mindRecent conversation on the need for diversity in children’s and YA lit sometimes leaves out books about or by people with disabilities. How do you think your novel adds to that conversation?

Well, of course I think teens and young adults with disability are a BIG part of this conversation.  Here we have the largest minority group in the country, which is also—almost unarguably—the least represented in popular culture. One primary exception is Glee which—I think—has done a terrific job of showing complicated characters who aren’t defined by their disability. Beyond that, we have a lot of characters with “veiled” disabilities which are never talked about but implied, like in Big Bang Theory where everyone has a really charming Asperger’s. There’s nothing wrong with the way Big Bang Theory presents high-functioning autism, but to me it feels a little like the disabled community is back in the dark ages when gay characters were never called gay, they were just funny and well-dressed great interior decorators. Why the hesitation to name the disability? Why not let millions of families mourning their newly diagnosed child’s future see: Hey look! This is autism too. It takes a lot of forms and this is one of them.

At this point, I fear there’s still a much-too-pervasive sense of “tragedy” surrounding the disability, as if it’s more polite to look away and not acknowledge its existence. I would also argue that books—and specifically YA literature—could go a long way to help the problem.   Look at the phenomenal success of middle grade books like [Sharon Draper’s] Out of My Mind (S. & S., 2010) and [R. J. Palacio’s] Wonder (Knopf, 2012). Both stories acknowledge the disability of the main character, but it is neither the primary conflict nor is it what you remember about the character after you finish. These books have a universal message that many readers relate to and we need more of them.

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Shelley Diaz About Shelley Diaz

Shelley M. Diaz (sdiaz@mediasourceinc.com) is School Library Journal's Reviews Team Manager and SLJTeen newsletter editor. She has her MLIS in Public Librarianship with a Certificate in Children’s & YA Services from Queens College, and can be found on Twitter @sdiaz101.

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