Not So Different: What You Really Want to Ask About Having a Disability

Book review by
Jan Carr, Common Sense Media
Not So Different: What You Really Want to Ask About Having a Disability Book Poster Image
Young man shares info about disability with honesty, humor.

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A lot or a little?

The parents' guide to what's in this book.

Educational Value

Information about spinal muscular atrophy. Names of wheelchair parts, for instance: "joystick," "headrest," and "backflip preventers." Vocabulary related to the disease: "neuromuscular," "recessive gene," "muscular dystrophy," "progressive," "proteins." Advice that because motorized wheelchairs are expensive and breakable, it's good to ask before you touch one.

Positive Messages

"When you meet someone who looks different from you, it's always best to treat them with kindness and respect." Though he uses a wheelchair and faces serious physical restrictions, Shane is "not so different." A sense of humor lightens the difficulty of challenges and increases life's enjoyment. We can help family members and friends who need assistance. "Don't be afraid to come up and say hello." 

Positive Role Models & Representations

Shane is an excellent role model, able to deal head-on with the challenges he faces, and with difficult questions he encounters about his disease and disability. He infuses the text with humor and positive spirit, but always speaks clearly and directly. An author's note provides more information about his activism, which includes speaking engagements and fundraising for his nonprofit, LAMN, which helps "people with the simple idea of laughing at our adversities."

Violence & Scariness
Language

What parents need to know

Parents need to know that Not So Different: What You Really Want to Ask About Having a Disability is by Shane Burcaw, a young man in his 20s who uses a wheelchair due to spinal muscular atrophy (SMA), a progressive neuromuscular disease. In 2014, he wrote a longer young adult memoir, Laughing at My Nightmare, that grew out of his popular blog, but this picture book is geared for younger readers. Illustrated with photos, the text answers questions kids might want to ask, such as "What’s wrong with you?" and "Why is your head so much bigger than the rest of your body?" and "How do you play with your friends?" Burcaw has a lively sense of humor that makes him relatable and the text unexpectedly fun as well as informative. The book combats ignorance about the disease and disability, and the message -- that people with disabilities have much in common with people who don't -- comes through clearly.

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What's the story?

In NOT SO DIFFERENT: WHAT YOU REALLY WANT TO ASK ABOUT HAVING A DISABILITY, author Shane Burcaw answers common questions kids might ask about his disease and disability, spinal muscular atrophy (SMA). Starting with "What is wrong with you?" he answers, "Absolutely nothing is wrong with me. I'm just a little different." He then provides an overview of the disease -- it makes his muscles weak, he gets weaker as he gets older, and though his body's stayed small, his head's not affected.  Some of the questions address logistical questions. He can't go up and down stairs, he showers using a special bathtub chair, his family lifts him onto the toilet. Other questions touch on the emotional -- "Do people ever make fun of you?" -- underscoring his message that "if they knew me a little better, they would see that I'm not so different."

Is it any good?

This book deals directly and honestly with the challenging disease of SMA, providing answers to frank questions kids might blurt out, and offering solid information with good-spirited humor. Author Shane Burcaw is a naturally likable guide to the disease and the impact it has on his daily routines, and he's remarkably able to find the fun in life. On a page about his motorized wheelchair, he labels not only the joystick and leg braces, but also the "tattoo" on his neck. He claims, "I can pop a wheelie with my brother's help." And proving himself a game physical comedian, he illustrates a story about accidentally flipping out of his wheelchair with a close-up of his face, wide-eyed after being upturned in the grass.

Because Not So Different: What You Really Want to Ask About Having a Disability is illustrated with photos, by Matt Carr, readers get a true sense of what Burcaw and others with SMA  look like. Kids with disabilities will be happy to see themselves represented in a no-nonsense, positive light, and other kids will get honest, candid information from a narrator who comes across as a fun friend. The whole book is inviting, closing with, "I love making new friends, so if you see me out and about, don't be afraid to come up and say hello!"

Talk to your kids about ...

  • Families can talk about Shane's disease in Not So Different: What You Really Want to Ask About Having a Disability. Do you know anyone who has SMA? Anyone who uses a wheelchair? Or who has a different disability?

  • What things can Shane do on his own that you do, too? What things does he need help with?

  • How does Shane's sense of humor help him enjoy his life? How does being funny in his writing help him tell readers facts about his disease?

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