Shane Burcaw is a writer and speaker working to change the public perception of disability with his honest candor. His 2014 memoir for teens, Laughing at My Nightmare, collected a number of stories about Burcaw’s life with spinal muscular atrophy, showcasing his determined positivity and sense of humor. His new book, Not So Different, in picture book format for a younger audience, also features Burcaw’s open sincerity as he addresses questions people have about life with a disability, no matter how uncomfortable. Burcaw spoke with PW about his first foray into writing for young readers, using humor to combat negative situations, and writing for different media and audiences.
In writing about life with a disability, do you have a specific mission in mind?
I’m hoping to change the public perception of disability. Right now, society still holds a pretty damaging set of beliefs and attitudes about living with a disability. There’s an ingrained idea that people living with disabilities lead sad, pitiable lives, and that (highly inaccurate) mindset creates many of the social hurdles we face on a daily basis. In other words, I’m trying to teach the world that having a disability is not incompatible with happiness, love, success, and excitement.
What is your writing process like?
I like to listen to quiet jazz music while I write, and I usually spend a few days formulating ideas in my head before I put pen to paper. Speaking of pen to paper, because of the extreme muscle weakness caused by my disease, all of my writing is done on various apps on my iPhone. How Apple hasn’t given me some sort of sponsorship yet is beyond me. Tim Cook, are you reading this?!?!
Does your writing process vary depending on the audience for which you are writing?
Not So Different was my first foray into kidlit, and I will say it was an entirely different monster from the experience of writing my YA memoir. For this book, I had to learn how to write for a younger audience while making sure I wasn’t unintentionally “talking down” to the imagined readers. For the books I’ve done and am working on, there’s definitely much more time spent evaluating what I’ve written, whereas on my blog and other online outlets, I allow myself to speak off the cuff, which inevitably leads to my online writing being a little cruder here and there. “Cruder” feels like it shouldn’t be a real word.
Your sense of humor comes through in your work, including your books, your website, and other forms of outreach. Does humor come naturally to you? Do you test ideas while or before writing?
Thank you! My sense of humor developed as a coping mechanism for the obstacles I’ve faced living with spinal muscular atrophy. It’s so much more enjoyable to make light of challenges rather than allow them to consume me. It combats the negative mental effects of difficult situations. So yes, it’s pretty natural today! I’ve learned that life doesn’t make sense most of the time, and I believe the best way to handle that is to laugh at it!
How involved were you with integrating the photographs and text in Not So Different? Did you play a role in choosing which pictures would be shot or used?
The photographs were a collaborative effort between myself, my editor and the creative team at Roaring Brook, and the uber-talented photographer Matt Carr. I sent them a preliminary list of ideas for pictures we could do to illustrate the concepts I wrote about, and then we worked together to narrow them down and make the whole project manageable.
Do you have plans to publish another book for young readers? What are you currently working on?
I’d love to, but write now (get it?) the only thing I’m working on is the later stages of my upcoming essay collection, Strangers Assume My Girlfriend Is My Nurse. It’s all about the ridiculous misconceptions people have about living with a disability.
You have a Tumblr, called Laughing at My Nightmare, on which you share things that make you smile each week, along with photographs. Where did the idea for this project come from?
My “Weekly Smiles” was a personal effort to take daily stock of the positives in my life. It’s a well-understood idea in psychology that forcing yourself to express daily gratitude can increase your overall happiness, so I started writing down one thing each day that made me smile, usually food-related, and over time I began sharing these each week to encourage others to do the same. You should try it!
You are the co-founder of the nonprofit charity, Laughing at My Nightmare, Inc. Between your books, your charity, and other outreach, what is your ultimate goal?
Putting it briefly: my goal is to make the world a happier place. With our charity, we teach kids about methods for living happier and effectively overcoming adversity. We also provide vital equipment to people living with muscular dystrophy. My writing, both online and my books, shares the overarching goal of showing people that it's possible—and beneficial—to approach adversity with a positive attitude. I hope my work makes some kind of tiny impact that will live beyond me!
Not So Different: What You Really Want to Ask About Having a Disability by Shane Burcaw, photos by Matt Carr. Roaring Brook, $17.99 ISBN 978-1-62672-771-7