Unabridged: a Charlesbridge Children's Book Blog — Zuzu Secret
Empathy Through Story: A Q&A with Miriam Chernick on The Zuzu Secret 0
To close out Disability Pride Month, we're honored to share this heartfelt Q&A with author Miriam Chernik, whose new middle grade novel The Zuzu Secret is inspired by her real-life experiences growing up with a brother who has Prader-Willi Syndrome. In this conversation, Miriam reflects on the power of storytelling, the importance of representation, and what she hopes readers will take away.
The Zuzu Secret features a main character with Prader-Willi syndrome. Why was it important to you to write a story that includes this specific disability?
I grew up with an older brother, Daniel, who was born with PWS, and I’ve been helping care for him ever since. During the COVID lockdown, Daniel came to live with me and my family for over fifteen months, so he and I spent many hours walking, talking, and reminiscing. Caring for a sibling in the role of parent was new and really hard, so I started to journal some of our conversations as a kind of coping mechanism. I wrote about what I was experiencing in real time and later, with Daniel’s unique speech pattern stuck in my head, my journaling became the basis of this story told in alternating voices.
What do you hope young readers—especially those with disabilities or who have siblings with disabilities—take away from this story?
For young readers who are unfamiliar with this disease or who have not grown up in this type of family, The Zuzu Secret is what we call a “window story,” as if the reader is looking through a window into a different world. For kids or siblings of kids with PWS or another disabling disease, this will be more of a “mirror story,” where they see a part of themselves as they read. In either case, I hope everyone who picks up this book will enjoy it for the story and characters but also come away with more empathy for their fellow humans.
Do you have any favorite books—past or present—that portray disability with care and authenticity?
The Trumpet of the Swan by E.B. White is about a boy, Sam, who helps Louis, a swan who was born unable to honk, learn to “speak” by using a trumpet. As a child, I loved this book for two reasons. First, it’s about animals—and I love animals! Second, it’s a story about disability, about Louis struggling because he cannot communicate with his flock. I sympathized with this swan’s difficult predicament and understood Sam’s wanting to help him.
More recently, I read The House in the Cerulean Sea by T.J. Klune, a masterfully written story about abilities, disabilities, and the “othering” that is so prevalent in our society. I read this book straight through, distraught over the treatment of some of the characters. And yet, in the end, Klune left me feeling hopeful.
What do you wish more people understood about Prader-Willi syndrome and similar rare conditions?
When my brother Daniel was growing up in the 1960’s and 70’s, disabled people were sent away to institutions or shuttered at home. (Our family’s situation was exceptional in that way. My brother lived at home and participated in everything the family did until he was an adult). Thanks to the ADA (Americans With Disabilities Act), which was signed into law in 1990, people with disabilities have many more rights. Today there are more services that enable people with physical and/or intellectual disabilities to be out in the world. Still, for some, seeing people with disabilities in public places—such as at the grocery store—is off-putting. They turn away. They tell children, “don’t stare.” But kids are curious. They learn by looking. So, as long as it’s not with contempt, I believe it’s okay to look at a disabled person—and acknowledge them. How? With a nod, a smile, a wave, or even a “hello,” just like you might acknowledge someone else. Every human deserves to be recognized.
What has the response been like from families or readers who share similar lived experiences?
The response so far has been overwhelmingly positive and heartfelt. After reading The Zuzu Secret, people in PWS families have been eager to share their own unique stories. Many have said they bought the book for friends and family to better understand this difficult disease. One mom told me, “When someone asks me what it’s like to live in a family with someone with this type of disability, I don’t have to answer anymore. I just hand them the book and say, ‘read this’.”
The Zuzu Secret is a story of honesty, empathy, and the bonds that shape us. We’re grateful to Miriam for sharing her experiences and shedding light on the realities—and the love—within families touched by disability. As Disability Pride Month comes to a close, may stories like this continue to open hearts and minds all year long.
More Resources for The Zuzu Secret:
Reader Group Guide
The Zuzu Secret Webpage
- Jaliza Burwell
- Tags: Author Q&A Charlesbridge Children's Book Publishing children's books Librarians Miriam Chernick Zuzu Secret
