Shane Burcaw lives a pretty normal life. He is 27 years old, has a stable job, a new house and recently became engaged to his fiancee, Hannah. However, Shane was born with a disease called Spinal Muscular Atrophy type 2, and has been in a wheelchair since he was 2 years old. SMA is the loss of nerve cells in the spinal cord and brain stem. SMA for Shane means that his bones have stopped growing giving him a smaller body and a larger head(his head didn’t stop growing.). This loss of nerve cells also causes him to be unable to move his legs, speak well, and the inability to control his head. And the common death rate for people of his age is in their 20s and their 30s. When you understand all of this, you may think that Shane lives a life struggling to get through every day. But, in reality that is the opposite. Shane lives a happy life and works everyday to break the stereotypes around disability and interabled relationships. 

Shane is an author, thanks to his education from Moravian College in Bethlehem, Pennsylvania. His first memoir “Laughing at my Nightmare” won the ALA Excellence in Nonfiction Award. While he was in college he won a Mid-Atlantic Emmy for a video he created called “A Will To Survive”. That video talks about his best and his worst visit to the hospital. I have linked the video below if you would like to watch it, I promise you you wont regret it. Shane is an activist for people with disabilities, and his passion inspired him to create his nonprofit organization “Laughing at my Nightmare”. I’m sure you see a running theme here. Shane has stated himself that laughing about his disease is a lot better than sulking in it. His nonprofit charity works to fund not only research for muscular dystrophy but it also helps provide equipment to those who need it also suffering from muscular dystrophy. His organization has funded over 170,000 US dollars for research. Shane also uses his organization as an outlet for communication. Through his website he sets up video call meetings for students of all ages and plans trips to visit schools to talk to them about his disability. I have also linked his nonprofit page. 

Shane has published two books since he won the ALA nonfiction award for his first book, one of them, a children’s book used for education about his disease. I have read his most recent book entitled, “Strangers Assume my Girlfriend is my Nurse”  and this book is full of jokes and the harsh realities of interabled relationships. As the title says a majority of strangers who see him together with his girlfriend Hannah often assume that she is his nurse, his sister, a friend, or even his mom. Often at restaurants Shane won’t be directly asked what he would like to order, the waiter will ask Hannah or whomever is with him, and some even give him a kids menu. In every situation, Shane will surprise the waiter when he orders for himself or when he politely asks to see the normal full size menu. Shane also talks about his want for adventure and to keep experiencing things himself. He tells many stories of risks he has taken for the sake of the experience and having fun. Without these experiences all of his stories would be told from behind the door of his wheelchair accessible home. This book is told from a comedic yet serious point of view. It’s a very good read if you want to learn about the experiences of people with disabilities. 

Shane met Hannah Aylward when she emailed him after seeing a video a news station did about him. After a little searching she found his contact information and sent him a short and sweet email introducing herself. Shane was floored. He couldn’t believe that a beautiful woman emailed him talking about a serious relationship and not once mentioned how inspiring he is, or his disability. Soon after, they went on a date and the rest is history. Earlier this year, Shane proposed to Hannah at her college graduation party. In their YouTube channel, they document their experiences and as of late they have announced that Hannah has found her wedding dress but won’t reveal the dress until the wedding itself. Shane hasn’t seen it either, so we can hope to see his first initial reaction! Another topic hat comes up a lot when you learn that Shane and Hannah are a couple is “Can you have children?” and the answer is yes. SMA is a genetic disease and it can be contracted by a child if both of the parents are carriers. In Shane’s case both his mother and father have the SMA gene and it was just chance that Shane contracted it. Hannah fortunately doesn’t have the gene so they can have children with the aid of a doctor; and the child will not have SMA. As you can see, Shane has a lot going on in his life. I wanted to write this article for many different reasons. Shane to me is very inspirational. He has changed my perspective on how I view people living in wheelchairs. Shane is proving to the world that he can accomplish just as much as an able bodied person can. He has inspired me to expand my knowledge of different disabilities and I hope that I can speak more about people with disabilities to help open the minds of others. In the next article, I plan to talk about the YouTube channel “Fathering Autism” which follows a father who documents the challenges of having a daughter with severe autism.  Stay tuned to see it!  

“A Will to Survive” video https://vimeopro.com/firerock/nonprofit-inspiration/video/123562895

Laughing At My Nightmare website https://www.laughingatmynightmare.com/