I normally don’t write about things like I am setting out for you right now but today my proverbial button was pushed. Today the Today Show decided to share a story they felt was news worthy and inspirational about Shane Burcaw who has Spinal Muscular Atrophy (the same neuromuscular disorder I have). And at first you’d think “Great Idea” yet upon reading the article and Shane’s blog this is a horrible idea.
The entire story is about how Shane has a “fatal and debilitating” disease and how his college friends are taking him around the country to travel and inspire people. But how can he be inspirational when his story is essentially “feel sorry for me cause I feel sorry for myself and I’m going to die.” And his self pity party is worse then the article shows as he was once part of an online group of individuals with neuromuscular disorders that I am part of and once he realized everyone in the group was more interested in celebrating what we’ve done with our lives in spite of the disability he left the group as it wasn’t a group of people going “so who didn’t die today?”
NEWSFLASH Shane, WE ALL ARE GOING TO DIE. Healthy and/or disabled.
Now, you might take this as jealousy since he’s getting national attention. But it’s not the case. I have never deemed my disability, same as Shane’s, to be a death sentence. Nor do I let it define me. I am an individual that happens to be disabled not the other way around.
The fact that the media is continuing to hold back the disabled by sharing these pity party stories disgusts me. I am the first in my family to graduate college, have my own Internet radio show, co own Bullspike Radio, co founded Rock Against Dystrophy, gone to countless concerts with friends and family, gone on several vacations with friends and family, and recently began DJing in local rock/metal bars and I’m far from death row or stopping anytime soon. And might I add that none of my friends became so because they took pity on me. They wanted to know me, not my disability, ME. I’ve even become friends with listeners of my radio show who had no clue I was disabled until they met me in person at a concert nor did it change their thoughts towards me once they knew.
Furthermore, there are countless others with disabilities who are out there busting there ass in spite of their disabilities yet none of us are getting recognized. They are lawyers, artists, accountants, teachers, and more and NOT letting their disability decide their fate for them.
Please start acknowledging individuals who see themselves first as an individual and disabled second and STOP feeding these self hating, self pitying people because they DO NOT represent the disabled population of the world.