Jennifer Niven on Writing About Facial Blindness

A novel about seeing and being seen.

In my new YA novel, Holding Up the Universe, I tell the story of Jack and Libby, who meet through a cruel high school prank. It’s a novel about seeing and being seen, about learning the truth inside others. It’s about acceptance. It’s about love.

Libby has been defined by her weight her entire life, even though she doesn’t let it define her. She’s been bullied. She’s suffered from anxiety so crippling she couldn’t leave the house. And, worst of all, she knows what it’s like to lose the person you love most. Yet she’s bold and confident and completely, utterly herself. And she loves to dance. When we first meet her, she is returning to school for the first time in five years, ready to take on the world.

In addition to having the world’s biggest Afro, Jack has swagger. He’s charming, he’s super-cool, he’s the man, but it’s all overcompensation. Because Jack has a secret. He suspects he has something called prosopagnosia, a neurological condition that leaves him unable to recognize faces, even his own. He can see faces—nose, mouth, eyes—but he can’t remember them. It’s as if he’s always walking into a room full of strangers.

I first learned about prosopagnosia from people I love who have it to varying degrees. I was interested in how they navigate the world and how, in particular, they find the people they love. I was especially struck by something one of them said about how he identifies people—because he can’t remember them in the conventional way, he remembers them by “the important things,” such as how many freckles they have and how nice they are.

I thought, Wouldn’t it be wonderful if this was how we saw people?

Get recommendations for the greatest books around straight to your inbox every week.

The more I learned about prosopagnosia, the more I wanted to write about it, but I needed to put myself in Jack’s skin. At first, it was difficult to truly see the world as he sees it, to learn how he would navigate relationships and what his condition would mean for him in certain situations. I read a lot and talked to experts and—most invaluable—interviewed people who have it. I wrote and rewrote Jack, and then I shared the manuscript with a trusted prosopagnosiac friend to get his input.

Jack uses identifiers to learn people and remember them. His little brother Dusty has ears that stick out. He memorizes this fact so that he can find Dusty in a crowd. His mom is either Mom with Hair Up or Mom with Hair Down. She usually looks too tired. His on-again, off-again girlfriend, Caroline, has a painted-on mole beside one eye and smells like cinnamon (and anger). His best friend, Dave Kaminski, has white hair.

At first, Jack remembers Libby the way everyone else does—by her size. But then he learns that she smells like sunshine. She has eyes the color of amber. When she laughs, it sounds like music. And in learning these things, he begins to actually see her.

He also learns to see himself too. Not just as the swaggering guy with the giant lion fro, but as Jack Masselin, and all that this encompasses.

It’s a lot like the experience of reading a book. The books we love become part of our identity. We inhabit them. We know the characters intimately. As readers, we invest ourselves in and fall in love with fictional people we’ve never actually seen. We’re given cues by the author as to certain physical features, coloring, mannerisms, and other characteristics, but we fill in the details. Characters take hold in our minds until we can hear their voices and see the way they walk. We carry around our own individual images of what they look like to us.

Holden Caulfield might not look the same to you as he does to me, but that’s okay. The important thing is we’re not making snap judgments based on appearance. We’re getting to know the characters for who they truly are. Inside, as well as out.

And that’s lovely.

Wouldn’t it be wonderful if this was how we saw people?


Featured image: Elsa Ienna

JENNIFER NIVEN's All the Bright Places is her first book for young adult readers, but she has written four novels for adults—American Blonde, Becoming Clementine, Velva Jean Learns to Fly, and Velva Jean Learns to Drive—as well as three nonfiction books—The Ice Master, Ada Blackjack, and The Aqua-Net Diaries, a memoir about her high school experiences. Although she grew up in Indiana, she now lives with her fiancé and literary cats in Los Angeles, which remains her favorite place to wander. Her next YA novel, Holding Up the Universe, will be published in October 2016.

About JENNIFER NIVEN

Jennifer Niven

JENNIFER NIVEN‘s All the Bright Places is her first book for young adult readers, but she has written four novels for adults—American Blonde, Becoming Clementine, Velva Jean Learns to Fly, and Velva Jean Learns to Drive—as well as three nonfiction books—The Ice Master, Ada Blackjack, and The Aqua-Net Diaries, a memoir about her high school experiences. Although she grew up in Indiana, she now lives with her fiancé and literary cats in Los Angeles, which remains her favorite place to wander. Her next YA novel, Holding Up the Universe, will be published in October 2016.

[email_signup id="4" download="http://www.readitforward.com/wp-content/uploads/2017/02/bookmarks_pens_withlogo.jpg" success="Success! Click below to get your bookmarks."]
[email_signup id="4"]