By Greg Smith
Blogger’s “I’m Dying” Message a “Nightmare” for Disability Community
It is not very often that a young person with a severe disability gets on the Katie Couric show on ABC, gets coverage on the Today Show, and commands the kind of national media attention 21-year-old Shane Burcaw has enjoyed recently. Burcaw was born with the same disability I have: Spinal Muscular Atrophy.
Two years ago, he started a blog that has exploded in popularity. Thousands of readers follow his often humorous observations about life through the unique lens from which he views the world. He is a senior college English major and an excellent communicator. The girls call him “cute.”
Shane has the support and love of several friends and family members who all look like they were cast by a Hollywood agency to play their parts. But they are not acting. Their genuine love, respect, and admiration for Shane shines through. Shane inspires and motivates people everywhere he goes and he aspires to be a motivational speaker. Recently, he and his friends went on a 9 city tour to raise awareness and money for a documentary film about his life.
The disability community has long sought our young “star.” We’ve needed someone with a real disability who is a household name in America. Someone who is an example for people with disabilities to emulate. Ladies and gentlemen…. I give you our STAR…
Wait a minute…
What’s the name of his blog? “Laughing at my Nightmare.” What nightmare? We read the first paragraph of the first entry:
“I will most likely be dead before I turn 30,” he begins. “Even that estimate is a generous one. I have a disease called Spinal Muscular Atrophy (Type 2) that has been slowly destroying all the muscles in my body for the last 18 years, 11 months, and 354 days. Eventually I will catch a cold, it will turn into pneumonia, and my body won’t be able to fight it off…”
OK, let’s hold off on the STAR for a minute. Our STAR can’t be basing his entire rise to stardom on his own death, can he? Well, I suppose he can do whatever he wants to do. This is America. But hopefully, young Shane is open-minded enough to consider different perspectives about his approach.
What’s the story here? Shane is dying? He has a sense of humor about it? He makes us laugh? He makes us realize that we have nothing to be afraid of? If he can live his life facing death, we can live our lives and appreciate all that we have going for ourselves, right? That’s the message?
That’s not the message. That’s the slant. The hook. The real message is that Shane is a talented writer with a strong and positive personality and a great support system of family and friends, who is living his life with muscular dystrophy to the fullest and inspiring people along the way. He doesn’t need the “I’m dying” part of it at all.
Like it or not, as Shane’s star rises, he represents all of us with SMA, and moreover all of us in wheelchairs, and moreover all of us with disabilities. He doesn’t need our approval for his star to rise. Most non-disabled Americans won’t even think to question the accuracy of his self-death sentence, nor the morality of the leveraging of it for marketing purposes.
Like Shane, I was diagnosed with SMA as a toddler. My parents were told that I would die in my teens. I knew about that assessment growing up. But I was too busy doing my thing to worry about it. I’ve never worried about it and I’m now a 49-year-old father of three. Eight years ago, I was diagnosed with congestive heart failure. That was supposed to “take me out” within 5 years. But I’m traveling the country speaking and focused on building my business and transitioning my kids out of the nest. I realize that drowning in my own fluid will probably be the way I exit this world, but I’m not going to use that as a marketing crutch to get more press. I’m LIVING with my disability. Not DYING of it. And it’s not a nightmare. Life has been a dream come true!
Now, I’m not Shane-Hating! I like the guy. I would love to meet him and talk to him. I’d probably have more in common with his dad. It would be cool to get our families together. I have so much I could teach them. I will reach out to them.
When Shane cracked the national media barrier, he graduated to a new level of responsibility, like it or not. I had to be taught the same lessons I’d like to teach him when my radio show exploded in the early 90s. I was firing missiles without having been to boot camp! I listened, learned and adjusted.
Shane, you are a representative for millions of Americans with disabilities. Like it or not, you simply are. You have the potential to shatter barriers that we have worked tirelessly for decades to overcome. Nobody is asking you to become a disability rights leader. Nobody is asking you to change anything about what you do. It’s how you do it. If I had a chance to talk to you, I’d discuss the “packaging” more than the “product.”
The “I’m dying” thing worked. It got you where you are. You don’t need it anymore. Drop it. And you’re not laughing at a “nightmare.” You should be laughing because you are living a life in which your dreams are within reach.
Like I said, acceptance from the disability community is not a pre-requisite to your star rising. But that acceptance and support could definitely move away some of the barriers and make your appeal more universal. How open minded are you? I’ll be in touch.