What’s a 15-year-old boy, confined to a wheelchair with a fatal form of muscular dystrophy, to do on his summer vacation? Take a 7,000-mile road trip across the country with 11 friends.
So thought Harvard Graduate School of Education (HGSE) student Logan Smalley Ed.M. ’08, who organized the trek and then captured it in his 2007 documentary “Darius Goes West: The Roll of His Life.”
The film traces the steps of the small crew and its quest to bring the Athens, Ga., teen, Darius Weems, to Los Angeles to have his wheelchair customized on MTV’s popular show “Pimp My Ride,” which fixes up run-down cars, customizing them with everything from fancy paint jobs to the latest earsplitting sound systems.
The picture has garnered extensive media attention and won numerous film festival awards.
An appearance on the TV program, Smalley hoped, would help raise awareness by introducing millions of viewers to the plight of those afflicted with Duchenne muscular dystrophy (DMD), Weems’ aggressive form of the incurable, terminal disease that attacks the muscles of the body.
Another aim of the trip was to explore the nation’s accessibility at various stops along the way. The group also celebrated the 15th anniversary of the passage of the Americans with Disabilities Act en route.
The film was screened Tuesday (March 18) at an HGSE Askwith Education Forum in Longfellow Hall.
Smalley first met Weems’ older brother Mario in Georgia at a summer recreational program for children with special needs. Mario, also suffering with DMD, died in 1989 at the age of 19. Before his death he asked Smalley to look out for his younger brother.
It was while watching an episode of “Pimp My Ride” that the Harvard student got the idea for the project.
The hour-and-a-half movie follows the three-week excursion as the group makes its way in their RV with Weems, who had never crossed a state line, to California.
Much of the film is affecting, including a scene featuring Weems playing in the ocean’s surf for the very first time. Later, while surveying the Grand Canyon, Weems emotionally exclaims, “I feel like I’m king of the world.” The film’s other highlights include a ride in a hot air balloon and a trip for Weems in his wheelchair, guided by the group, down San Francisco’s famously windy Lombard Street.
But they hit bumps along the way as well. A stop at a gas station early on proves futile, as there is no wheelchair ramp, as does a trip to the top of the St. Louis Arch, which has a set of non-negotiable stairs.
The film also includes the stories of other families affected by DMD.
Tracy and Benjamin Seckler discuss how living with the disease has changed their lives. Their young son Charley was diagnosed with DMD in 2004. All proceeds of Smalley’s movie benefit the organization the couple created in their son’s name, Charley’s Fund, which raises money to support research for a cure.
Though Weems was unsuccessful at getting on MTV, when he returned to Georgia, generous donors provided him with a new wheelchair complete with a full stereo system, a cell phone, PlayStation 2, and flashy custom wheels.
At the end of the documentary, the hopeful teen tells the camera, “People like me, we can help the whole world open up their eyes.”
After the film, Smalley, who is pursuing a master’s degree in HGSE’s Technology, Innovation, and Education program, took the microphone to address the crowd. He first requested a moment of silence to honor the memory of Eve Carson, the recently slain University of North Carolina student body president. Carson’s brother Andrew was a member of the film’s crew.
“She was a huge advocate [of ours],” said the director, “a loving sister and a friend to all of us.”
Smalley, who had earlier ducked out of the screening to give Weems a quick tour of Harvard Yard, then invited members of the film’s team, as well as the director of research and strategic planning for Charley’s Fund, onstage to answer questions.
In the film, Smalley said his plan wasn’t to save Weems’ life, but to change it. He told the crowd that he and his team did exactly that.
“[Darius] went as far West as he could possibly go,” Smalley said, of Weems’ journey and triumphant dip in the waters off the California coast. “He touched that ideal.”
In addition to raising awareness of DMD with his film, Smalley said he also created a curriculum for schools that accompanies the documentary called the “Know About It” program, which engages students in discussions about various aspects of the film and its themes.
Weems, who raps throughout the film and is scheduled to appear in the fall with the rap group Run-DMC at a benefit concert, said he hopes the project will help spread the word about DMD, and one day even lead to a cure.
“We’re young people,” Weems told the audience, “We’ve got more life to live.”