A couple of years ago Darius Weems, 17, had never seen mountains or the Pacific Ocean. In the summer of 2005, the Athens, GA. native, who was born with Duchenne Muscular Dystrophy, crossed state lines for the first time in his life. Together with buddy Logan Smalley (his former camp counselor at Project REACH) and 9 other friends, the young men hit the road with plans to see postcard views of America. The trip is chronicled in Smalleys' documentary Darius Goes West, which opened and closed the 2nd annual Sunscreen Film Festival Easter weekend at the Renaissance Vinoy Resort in St. Pete.
Duchenne Muscular Dystrophy (DMD) is the most severe form of muscular dystrophy. It's also the most common fatal genetic disorder to affect children and has no cure. In 1999, Darius' older brother Mario passed on from the same illness. For years, Darius watched as his brother's body slowly stopped working, knowing he was destined for the same fate. Those who inherit this disease rely on wheelchairs for mobility by the age of twelve and don't live beyond their early 20's.
Knowing Darius was more than halfway through his lifetime without ever having been out of his hometown, his friends decided a roadtrip was in order, hopeful that MTV's Pimp My Ride would trick out Darius' old set of wheels when they reached L.A.
Their adventure coincided with the 15th anniversary of the Americans with Disabilities Act. The young men learned just how accessible (or not) their country is to all Americans. At the Carlsbad Caverns in California, 75 stories inside the Earth, Darius was able to maneuver his wheelchair through the pathways with enough room to turn around in most places. But in St. Louis, 50 steps prevented him getting to the very top of the Arch. Special treats abound in the movie, like meeting United Cerebral Palsy volunteers William H. Macy and Desperate Housewife-y Felicity Huffman.
Through generous donations and lots of hospitality, the crew traveled the country having the time of their lives together: enjoying wasabi for the first time, floating in the ocean, and white water rafting. Early on, MTV expressed interest in fitting rims and a Playstation 2 onto Darius' wheelchair. The travelers spend most of the film trying to prove that such an episode would be desirable to Pimp My Rides' 70 million viewers. Smalley asks in the film: “What better way to educate the younger generation about a disease that affects their demographic?â€
Depending on your level of cynicism, it may not come as a surprise that MTV cops out by the end. But once the trip comes full circle and the gang is back in Athens, community members pull through in a special way. As essential as it is to be a citizen of the world and be exposed to as many different people and places as possible, it all starts with being a good neighbor. For Darius, the folks at home follow through.
Midway through the documentary, we also meet Charley Seckler, about 5, who was diagnosed with DMD the year before. He's as active as any child, but slowing down. His father Benjamin, a doctor, and mother Tracy, know what's coming. Just months after the diagnosis, Charley's parents founded Charley's Fund, a nonprofit that has since raised $2.5 million towards research or a cure for DMD. They hope to eradicate the disease in Charley's lifetime. All proceeds from Darius Goes West goes to Charley's Fund.
“When Darius talks about a cure, he doesn't talk about it for himself, but for the next generation,†said Logan.
Of all the messages in the film, the one Darius stresses is that wheelchair reliance does not mean limited mobility. “You shouldn't be afraid of traveling. Some places may not be accessible, but you'll find some way to get around.â€
“Everyone should see this film,†said Tony Armer, co-director of the Suncreen Film Festival. He's a bit partial to be sure; he was among the few who handpicked the film from a couple hundred submissions. After having seen it, so am I.
Darius, who likes video games and freestylin', spit at a festival party Saturday night. His music can be heard throughout the film and he's busy completing an album (with a producer who's worked with a band whose name sounds like Charles Barkley).
As for the rest of the crew, most of whom went to school for either special education or film, they'll be traveling to festivals around the world with their message. Now you know it.
Darius Goes West received the Audience Award and was selected Best Documentary Film of the Festival by the Sunscreen Film Festival jury.
This article appears in Apr 11-17, 2007.