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From Scars to Stories: The Importance of Disability Representation for Teen Readers

Wednesday, June 26, 2024

By Deanna Altomara

One of my earliest memories is of my mother reading me a book. It’s a sweet, simple memory, of a toddler curled up on her mommy’s lap, pointing to the smiling faces of Sesame Street characters.

The book was A Visit to the Sesame Street Hospital. I was three years old, had recently been diagnosed with a heart defect, and was getting ready to have open heart surgery. In a gentle voice, my mother described the kind doctors and nurses who would take care of me, the tall bed I would sleep in at the hospital, and the cool new pair of blue pajamas I would wear. I was excited to get my own hospital bracelet (with my name on it!) and to visit the hospital playroom. Learning about Grover’s hospital visit helped me to understand what was going to happen to me there—and to not be so afraid of it.

The surgery went smoothly, and I grew up hardly thinking about the scar on my chest. Meanwhile, I tore through one book after the next—from the Berenstain Bears to Magic Tree House to Harry Potter. Reading helped shape my view of the world, and everything that went on inside it.

As I approached middle school, like many kids, I started to pay more attention to my body. And I began to worry about what my scar actually meant. Of course, I turned to the world of books, searching for other kids like me.

I found my battered old copy of A Visit to the Sesame Street Hospital, thumbed through the old picture book, and tossed it aside. Then I went to the library.

There were plenty of colorful picture books about children who needed to go to the hospital to get their tonsils out or set a broken bone. But by 11 years old, I already knew that life was rarely as simple as picture books said. I didn’t want sugarcoating: I wanted the whole truth about what it meant to have a complex medical condition.

My mother had always assured me I was perfect, but maybe she was wrong.

After all, could you ever actually fix a broken heart?

At the library, I tore through the shelves of chapter books. I was privileged in that many of those books featured white girls like me, but none of them had a scar on their chest. There were only a few characters with any sort of health issue. Of those who did, most had cancer. It was the era of The Fault in Our Stars, and in books like that, cancer was almost never curable. The characters’ lives were ruled by grueling treatments and hospital stays. They were often depressed and lonely, hopeless and cynical and sad. And of course, the book would end with their deaths, and everyone around them in tears.

Is that how my story would end? Is that how it was supposed to end?

I was devastated, but too scared to tell anyone. I knew people would say, with the best intentions, that my heart condition had been different, that everything had been solved with the surgery. But what if it hadn’t? What if the surgeon had missed something? If my heart had already threatened my life once, who was to say that it couldn’t do it again?

Looking back, I wish I had known that there was more than one way for the story to end. Despite my parents’ and doctors’ best assurances, I didn’t see any evidence that a child could have a major medical condition and still be happy, or even just fine. I wish I had read some stories about kids whose medical mishaps hadn’t defined them.

Today, disabled characters are becoming more common in books for people of all ages. I haven’t been able to find a lot of books about CHD—the exception being Otherworld, whose heart warrior seemed like a single-dimensional plot device. Nonetheless, I’ve still really resonated with characters who have a variety of conditions. I’m especially excited to see these characters shine in middle-grade literature, from Rick Riordan’s ADHD demigods to D/deaf Cece daydreaming her superhero exploits in El Deafo.

One of my favorites has been Verónica, who has hip dysplasia, in Breathe and Count Back from Ten. So many little details in that book made me feel seen: the vivid description of anesthesia, parental concern about overexerting herself, normalized doctor visits, the dual self-consciousness about and pride in her scars. It underscored that CHD is part of my story, not the ruler of it.

I wish I could go back and tell my teenage self that as much as my health conditions have shaped the person I am today, they don’t define me. I’m not just a girl with a CHD, and my story isn’t bound by stereotypes of sick kids. I’m a heart warrior, and I’m also a dreamer, a lover, an adventurer. I’m a reader, and I’m a writer.

We still have a long way to go, but I’m so excited for a new generation of books that can help kids to understand their bodies—and to realize that there is no one right way to tell a story.


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