My nephew, Shane Burcaw, is a bit of a media star at the moment. He’s all over the blogosphere, and just finished up an East Coast speaking tour. He’s become the subject of many a video, news story and blog post. You can read about him at his tumblr blog. Start at the beginning. I will warn you, his language can be pretty raw but the story’s worth reading.
The whole journey’s been really wild and weird at the same time. I’ve watched from the sidelines, proud of Shane and what’s he’s doing, but with a bit of discomfort relative to the media coverage of his journey. I recently read a blog post by Bill Peace, a blogger with a lot to say about living with disability. I was righteously indignant when I first read it, but on a second and third read, decided it was a great opportunity for me to articulate what is really unique and positive about Shane’s wild ride.
Here’s my response to his post:
Your post helped me get words around parts of Shane’s recent media journey that I’ve found unsettling, but have been unable to articulate. So, for that, I thank you.
I am horribly biased here; Shane is my nephew, the son of my husband’s brother. I have known him all of his short life, which has extended far beyond his original prognosis. Every day we have with Shane is a gift and we, his family, are profoundly grateful, as we are for each day we have with all of our children, nieces, and nephews. Burcaw children ROCK, that’s all there is to it. We watch Shane continue to live his life, to write, start a business, make new friends, and experience far more than we ever thought possible, and we are happy. We laugh and enjoy life with him. Burcaws do a lot of laughing.
I have a larger point too, one that doesn’t include me telling you to “get stuffed.” Yes, Shane’s message is simplistic, and yes, I do cringe when I see how the video producers have dramatically emphasized the terminal nature of his disease and go on about his courage (though he is absolutely courageous). And, I absolutely hate it when he talks about his private parts on his blog with 300,000 followers!! Ugh. How is this elevating the dialogue regarding disability rights? I’ll tell you — it’s not.
And that’s just fine.
Shane’s audience is not your audience. It’s not my audience. Not even close. Shane spoke yesterday to middle and high school students in an alternative setting. These kids have disabilities of their own, mostly mental and behavioral, and are on the fringes of society, screwed over by every “system” with which they interact. They are mostly poor and African-American. When Shane spoke to them, you could’ve heard a pin drop. He talked about his life, his disease, and some of the challenges he faces. He did talk about being positive in the face of life’s adversities, whether large or small, though he used simpler words, like “suck.” Afterward, he took questions. The kids asked him how he took tests, how did he eat, did he sleep in a normal bed, what were his fears? One kid stood up and thanked Shane for coming and for talking to them about his life. I believe he may have used the word “inspire.” Then, we all had cake together to celebrate Shane’s 21st birthday.
You’re right – no laws were changed, no one waxed poetic on the lack of rights afforded those with disabilities, though we did talk about how several large men had to lift Shane’s gigantic wheelchair onto the stage because it wasn’t accessible. But , those kids now know more about what it means to be disabled. They know Shane’s not developmentally disabled just because he looks like a “T-Rex” as he says. They think it’s cool they can follow him on Twitter. They know that even though he’s a little, funny-looking white kid, he’s a lot like them, with fears and insecurities along with hopes and dreams for a better future. I don’t know for sure, but I suspect those kids might now think twice before parking in a handicapped space.
So, okay, “inspirational porn” is a bit harsh, but I can see how you might feel that way. I encourage you to close YouTube and go on about your business of elevating the dialogue, important business which absolutely needs to happen. And Shane will keep on talking to kids about life and how it doesn’t have to suck. He’ll tell a few jokes when he does this. And we’ll be laughing with him all along the way.
Burcaw children, 2010.