Inspiration, Kids, Random Stuff

Shane’s Story

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:

Bill,

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.

2013-05-29 19.55.07I 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 kids 2010

Burcaw children, 2010. 

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Family Traditions, Random Stuff

The Color of the Past

“The farther backward you can look, the farther forward you can see.” – Winston Churchill

Last summer, I sang in church. I have a couple of buddies who play guitar and we did a lovely rendition of “Come, Thou Fount of Every Blessing.” We even got a “whoop!” of appreciation afterwards, a real feat for a sedate Moravian church.

As we waited for church to begin, my friends and I discussed possible names for our little acoustic, folksy group. I’ve been doing some genealogical research and mentioned I had a great picture of a couple of my ancestors, the Rev. Cole Brothers. The brothers were Methodist Episcopal circuit preachers up in the mountains of Virginia and North Carolina in the early 1800’s. “Hmm,” my friend said, “Do you have any interesting female ancestors?” My great-great-great grandmother’s name was Temperance – Tempy for short. So, we’re now “Sister Tempy and the Rev. Cole Brothers!”

I don’t know much about “Sister Tempy,” but I do know about my great-great grandmother, Carolyn Neumeyer. While working as a hatmaker, she was knocked over by Teddy Roosevelt’s carriage in the streets of D.C. The President was mortified and offered her a ride home (she was unharmed). She refused, on the grounds that it was improper for a single woman such as herself to accept a ride from a gentleman not part of her family, even if he was the PRESIDENT of the United States!! Another ancestor served in the NC legislature, riding horseback from his home near Boone, NC all the way to Raleigh (probably an 8-day ride). Family legend has it that Lorenzo Dow Cole, my great-great grandfather, was spared certain death during the Civil War when the musket ball heading for his heart was stopped by the bedroll he carried on his chest. And of course, I can’t resist throwing in my 7th great uncle, the pioneer Daniel Boone. Now that’s an exciting life!

Ah, the color of our history. Our ancestors seem so much more interesting and brave than we are or think we could ever be. And yet, day after day, week after week, we persevere, even if it is just through the mundane aspects of our own suburban lives. Life is as dull as we make it.

Carolyn, Tempy, Daniel Boone, and the Cole brothers inspire me as I sometimes trudge through my own daily living. I may not be riding horseback through the rugged NC mountains or straightening my bustle after a brush with greatness, but I’m blazing my own trail. What will my descendants say about my life? I hope I can live up to the colorful legacy of my own past!