3:55 p.m., March 19, 2009----A diverse mix of about 100 students, faculty, staff and community members with and without disabilities enjoyed a free screening of the award-winning documentary film “Darius Goes West” on Monday, March 16, at the Gore Recital Hall.
The film, which was produced on a budget of just $70,000, chronicles the journey of 15-year-old Darius Weems, who has Duchenne muscular dystrophy, and 11 of his friends as they travel from his hometown of Athens, Georgia, to Los Angeles in hopes of having his wheelchair modified on the MTV program “Pimp My Ride.”
Along the way, Darius gets his first glimpse of the ocean, takes a boat ride in a Louisiana swamp with alligators, sits in awe at the edge of the Grand Canyon, rides in a hot air balloon, and goes whitewater rafting.
That journey took place in 2005, but Darius and his friends are still touring the country together raising awareness of the disease and the issue of accessibility for people with disabilities, as well as raising funds for muscular dystrophy research. Their current goal is to sell one million DVDs of their film by Darius's 19th birthday in September.
Duchenne muscular dystrophy is the most common and most severe form of muscular dystrophy. It is the number one genetic killer of children, striking one in 3,500 boys worldwide. There is no treatment, and those with the disease die by their early 20s.
However, recent genetic research has revealed the gene that causes the disease. Scientists are now hopeful that they will soon find a way to block the action of that gene, thereby halting the degenerative domino effect it sets off within the body.
In one memorable scene from the movie, Darius tries sushi for the first time in San Francisco, and his friends dare him to eat a spoonful of wasabi, an ultra-hot condiment. Darius has trouble saying the word “wasabi,” which instead comes out “goslabi.” Bystanders at the restaurant scolded the young men for taking advantage of their friend in a wheelchair, but they explain that they were treating him like they would any other friend, not with pity but with brotherhood.
After the screening, Darius and his friends, most wearing bright green T-shirts with the word “goslabi” emblazoned on the front, appeared on stage to answer questions from the audience. Darius was asked about his reaction to his new celebrity status, which he humbly described as “cool.”
Darius clearly loves life on the road. He knows that he probably doesn't have much time left. His older brother died of the same disease at age 19. But his mission has become to contribute as much as he can to fighting the disease for the next generation and to encourage others with disabilities to live their lives to the fullest.
Darius's friends are all young men in their 20s, and working with their cause has become a full-time job, according to Daniel Epting, the group's designated RV driver. He estimates they've traveled 25,000 miles in their RV since last September. They make appearances at screenings, frequently at middle and high schools, targeting a younger audience that is unfamiliar with actor Jerry Lewis and his muscular dystrophy telethons.
Their appearance in Delaware marks their 42nd state. Several of the original crew now remain in Georgia to maintain the group's web site. So far, they've raised over $2 million for Duchenne muscular dystrophy research.
Darius and his friends mingled with the audience in the lobby, where DVDs and “goslabi” T-shirts were available for sale. Many students in the audience snapped up the green T-shirts, perhaps thinking they would make good St. Patrick's Day apparel the next day, while about 50 DVDs were added toward the eventual goal of one million.
Everyone in the audience was invited to hang out with Darius and crew at Grotto's Pizza on Main Street in Newark afterward. Denise Jenkins, a junior special education major, said she would probably take them up on the offer.
“I've seen the movie before in class,” she said, “but I hadn't had the chance to meet everyone. I like seeing the guys interacting with each other. I have a brother with disabilities, and I wish more people reacted to him like that.”
Ray Leight, who is a U.S. champion wheelchair ballroom dancer, said he had never heard of the film until his girlfriend suggested they attend the screening.
“I'm just as, if not more, impressed with the able-bodied young men in the film who are able to think outside of the box and show the fortitude it takes to carry out an effort like this at such a young age,” he said of Darius's friends. “Empowerment is the best education.”
The event was hosted by the University of Delaware Center for Disabilities Studies, with the support the College of Human Services, Education and Public Policy, and in partnership with the Inter-Fraternity Council, the Department of Human Development and Family Studies, Easter Seals of Delaware and Maryland's Eastern Shore and Best Buddies Delaware. The Marriott Courtyard Newark-University of Delaware provided accommodations for Darius and his friends.
Article by Beth Chajes