Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Saturday, July 04, 2009

Independence Day?


It's Fourth of July, Independence Day, America's birthday today. Should be a joyous day -- parades, fireworks, hot dogs, hamburgers, family and friends, and Phillies baseball. But forgive me if I'm not quite feeling it.

America is one of the better, if not best, places to live in the world. I wouldn't be here without its first-rate medical care. I received an excellent education here. And I am grateful for the freedom to express myself as I am right now. But for people with disabilities, the promise of this great nation is not quite within in reach. As I write this entry, I am reminded of the great Frederick Douglass' Fourth of July speech, in which he praised the ideals upon which the nation was founded, while explaining that on this day, he could not celebrate while his fellow African-Americans were enslaved. I do not seek to compare having a disability to the cruelty of slavery, but I understand Douglass' sentiment.

In America today, people with disabilities are restricted in their ability to live independently due to lack of funding for care and inexpensive or subsidized accessible housing. Some of my compatriots are forced to live in nursing homes. Americans don't believe in handouts. Yet if people with severe disabilities like mine work, they are limited in what they can earn in order to keep from losing the nursing care that no private insurer would provide unless I were a multi-millionaire. Americans are taught as children the value of saving. And yet people with disabilities are allowed to save a pittance before they lose their benefits.

Don't get me wrong. There are much worse places I could be. I also have great hope for the future of people with disabilities in America. Just don't get bent out of shape if I'm feeling less than enthusiastic today.