Monday, June 1, 2015

Laughing at My Nightmare by Shane Burcaw

Twenty-one year old Shane Burcaw's acerbic, raunchy, cussing look at life from a person with a debilitating disease, is written to teenagers with an authentic voice and good message, but it is flawed by its negative stereotype and insensitivity toward people that suffer from mental challenges. Shane is only affected physically and ironically he perpetuates stereotypes in his comments about those with mental disabilities. Shane is a courageous kid who uses humor to deal with his spinal muscular atrophy, a disease that causes the muscles to waste away. He weighs about sixty pounds and shows how he has slowly lost control of  the muscles that help him hold his head up, chew, and talk. He has never walked and relies on others to help him every day, but this doesn't keep him from living a full life. He reveals in his biography how he has made friends and lived as normal a life as possible playing sports, dating, and starting a nonprofit organization. It is obvious he is living a full life.

Shane's family is loving and supportive. They all use humor as a way to deal with Shane's disease and they are very positive. They have taught Shane that life is what you make of it and that being in a wheelchair does not mean you cannot live and dream like everyone else. It does mean that obstacles will be different and normalcy will take on a different meaning. The book describes Shane's painful surgeries and need for help with sleeping, dressing, eating, and moving around. He does not dwell on the fact that he will not live a long life or that he cannot walk.

As someone trying to help others, I am baffled by the instances where Shane separates himself from others with disabilities that affect social or mental skills and perpetuates stereotypes that this type of person is outside of society and "not like him". In a world that has problems with intolerance and persecution of marginalized people, I was offended several times by his stance. And as a person with a nephew who has autism, I find the book insensitive to my nephew's value of being a member of society. He implies that people like this are not worth his time. Shane does not go after any one disease, but instead refers to kids with mental challenges as having tantrums or drooling and being so different from him that he can't fit in with them. In his quest to be considered normal he unintentionally puts down others with disabilities. The result is it keeps the book from reaching its potential even though for the most part I liked his authentic viewpoint and humor.

I liked the book most when Shane stuck with describing the challenges of having his disease. I laughed pretty hard with his description at the doctor's office yelling football commentaries at the top of his lungs to deal with the pain of getting monthly shots. He uses some good figurative language and captures the terror of not being able to breathe. The budding romance at the end loses this writing style and he sounds more like a hormonal boy out of his mind that he has a girlfriend with most of the descriptions being "fucking awesome." I have a bias where I think authors or characters in movies that resort to a pattern of swearing are being lazy. It is easier to swear than come up with a metaphor or simile describing feelings. I suppose you could argue the swearing goes with his character. He does swear excessively throughout the book. Of course, I work with kids every day all day long and swearing is not in my vocabulary.

Shane spends much of the book convincing himself and other people that he is normal even though he is in a wheelchair. He shows how adults can be patronizing and pitying toward people in wheelchairs. The struggles he has with relying on others to help him all the time are poignant and revealing. Even his terror at a college event and wondering if someone was going to break his neck by hitting his chair so hard running to the stage show how fragile his body is. But he also shows great courage in trying things. He has discovered that through his positive dealings with spinal muscular atrophy, he has helped others through his blog and organization deal with their own struggles in life. His life is valuable and he is contributing to society in a terrific way. You go Shane. Just clean up your mouth a little, would ya?

2 Smileys

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