Shane Burcaw has heard them all.
“What’s wrong with you?” “Why is your head so much bigger than the rest of your body?” “Do people ever make fun of you?”
Burcaw expects — and welcomes — blunt questions such as these from the kids he meets as he visits schools, speaking about what it’s like to have a disability.
Children and their questions are the focus of the 25-year-old Bethlehem resident’s second book, “Not So Different: What You Really Want to Ask About Having a Disability.”
The picture book for children ($17.99) is published by Roaring Brook Press, an imprint of Macmillan Children’s Publishing Group.
Burcaw has spinal muscular atrophy and has required the use of a wheelchair since age 2.
“Throughout my life, I have noticed that people who don’t know me treat me differently because of the way I look,” Burcaw says.
“There’s a misconception about what it means to live with a disability and it’s not fun to experience that. It’s an overarching issue in our society. I felt like we could start with children to begin to fix the problem.”
Like everything else Burcaw does, “Not So Different” is laugh-out-loud funny with a serious message of positivity. (And wacky photos of Burcaw and his crew.)
He started his writing career in 2011 with a Tumblr blog, sharing what it’s like to have spinal muscular atrophy. It’s a progressive neuromuscular disease that robs people of strength by affecting the motor nerve cells in the spinal cord. The blog’s brash, unapologetic humor and honesty attracted hundreds of thousands of followers.
He then began writing an occasional column for The Morning Call that shared the same kind of personal stories, told in an uplifting and funny way.
That led him to write his first book, “Laughing At My Nightmare,” a 2014 memoir filled with bittersweet and hilarious stories about what it was like to grow up with a disability.
Writing was a great way to reach people. But Burcaw wanted to do more. So in 2015 he started a nonprofit organization, Laughing At My Nightmare, Inc., to provide people who have muscular dystrophy with needed equipment and technology.
To date his organization has provided more than $62,000 in financial assistance and equipment to people with muscular dystrophy.
Throughout all his work, he traveled to schools, talking to children about what it’s like to have a disability. Burcaw says he loves questions because they provide an opportunity to educate.
“Kids have a ton of questions,” Burcaw says. “I speak to kids and they have the most bizarre questions about how I live my life. I love that and I love that they are curious.”
One of the more out-there questions: “People asked me if I could go to the bathroom.” Not, how. If.
But the most common question he’s asked is about whether he was bullied. That’s a subject addressed in “Not So Different.”
“It always seems to suggest to me that that person asking the question is dealing with bullying on their own,” Burcaw says. “That they have the confidence to ask that really means a lot to me.”
He’s disturbed by how often he’s asked that question. He tells kids they should tell a trusted adult what’s going on.
“I try to explain that bullying and mistreatment come from a lack of understanding,” Burcaw says. “I tell them it’s important to remember that the person who is doing the bullying doesn’t know anything about you, and all their ideas about you are made up. It’s up to you to show them who you really are.”
Burcaw’s next book, “Strangers Assume My Girlfriend is My Nurse,” is scheduled to be released in the fall of 2018. The book is based on a 2015 column he wrote for The Morning Call that went viral when it was was picked up by numerous national sources online.
It began with a powerful anecdote: “I was recently out on a dinner date with my lovely girlfriend, Anna, when a stranger approached to have a friendly conversation. He said he was a huge fan of my column, and then turned to my girlfriend and asked, ‘Are you his sister?’
“Now, there is nothing inherently wrong with his question, but if I saw two young people out having a nice meal together, I would probably assume that they were dating. This, however, does not seem to be the assumption people make when you throw a wheelchair into the picture.”
The book will also include other personal stories and shenanigans.
He’s also been at work on another new chapter of his life. He’s been getting Spinraza injections, the first and only treatment designed for spinal muscular atrophy. He has had four injections so far.
“It’s been stressful, going down to Philly [Temple University Hospital],” Burcaw says. “I’ll go every four months for the rest of my life.”
For now, he’s staying the course. He’s had no side effects from the injections but no positive effects either. The goal of the injections is to slow or halt the progression of the disease, for which there is no cure.
“I may never get back my strength but if I can slow down or stop the disease, that’s a huge victory.”
