Watching the 250 hours' worth of films submitted to WW's Longbaugh Film Festival (Thursday-Sunday, March 29-April 1), of which I'm the executive director, has been a special kind of pain. Sure, I eyeballed a lot of great movies, films you'll be able to see at the festival. But there was also a lot of dreck. Think of the worst movie you ever saw in the theater or rented on video. Now, imagine something far worse—something that looks like it was shot on a budget of about $50 by blind monkeys using a camcorder. That's what my job has been for the past five months.
So you can imagine I've been feeling sorry for myself. That is, until Darius Weems rolled into my life.
Weems didn't literally roll into my life, and I have never met him in person, but Weems is the star of a documentary, Darius Goes West: The Roll of His Life, which came to me as part of that pile of nearly 300 films submitted to Longbaugh. Made two years ago, when Weems was 15, the documentary chronicles the teenager's cross-country journey—his first trip outside of Athens, Ga., where he lives with his mother in public housing. In many ways, Weems is a typical teenager—he listens to music on his iPod, he's fascinated with cars, and he loves playing video games. But what separates Weems from so many other teens is Duchenne muscular dystrophy, which has stuck him in a wheelchair for the remainder of his young life.
A disease primer: Duchenne muscular dystrophy (DMD), the most common of all forms of muscular dystrophies, is a genetic disease, prevalent among men, that affects approximately 1 in 3,500 boys. Because the gene for DMD is carried on the X chromosome, girls won't manifest symptoms of the disease unless both X chromosomes are infected. Therefore, cases of girls with DMD are extremely rare. Symptoms generally begin before age 5, characterized by muscle weakness that can make children appear clumsy or uncoordinated. To the untrained eye, a child with early-stage DMD does not look much different from any other klutzy kid who gets picked last for sports teams. But as the disease begins to take over the body, muscles continue to weaken and eventually waste, confining most, like Weems, to wheelchairs before the age of 12.
When most teenagers are begging their parents for keys to the car, teens with DMD are forced to rely on wheelchairs that can cost upward of $20,000. By the time a kid with DMD is a teen, it's likely his muscles will have deteriorated to the point where he can no longer dress himself, or take a shower without being lifted into the tub by a parent or caregiver. Steroid treatment makes many kids with DMD, including Weems, balloon in size; some can gain hundreds of pounds over time. Despite his imposing size, Weems still has trouble even holding a phone to his ear.
Eventually, DMD will affect the ability of Weems' heart and lungs to function. With no known cure, his life—and the lives of all with the disease—will be cut dramatically short. Most DMD sufferers won't live past their 20s. Weems' older brother Mario lost his life to DMD at the age of 19.
Despite the subject matter, Darius Goes West is not a depressing, disease-of-the-week movie. In fact, if anything, the film is an amazing celebration of life. With friend-turned-filmmaker Logan Smalley acting as director, Weems and the rest of the documentary crew (many of which were counselors at a summer muscular dystrophy camp Weems attended) set out on a cross-country road trip from Georgia to California. Every stop along the way—from the bayous of Louisiana to the Grand Canyon—is a new adventure for Weems. At the beach in Florida, he sees the Atlantic Ocean for the first time in his life. When he's carried into the surf by his friends, the water holds Weems up, allowing him to stand for the first time in nearly four years.
Weems' posse's ultimate destination is Los Angeles, where they hope to persuade MTV's Pimp My Ride—a show where rapper Xzibit helps lucky car owners get their clunkers transformed into street-eating hot rods—to customize the young man's electric wheelchair. More than just a silly dream of a teenage boy and his friends, the real goal is to make the millions of viewers of Pimp My Ride aware of the No. 1 genetic killer of young people in the world. For years, the Jerry Lewis-hosted Muscular Dystrophy Association of America telethons helped educate the world about the disease. But as Weems and his friends stump people on the streets of New Orleans by asking who Jerry Lewis is, the documentary proves that making people aware of DMD and the other 30-plus types of muscular dystrophy is a never-ending battle with an outdated strategy.
Getting onto Pimp My Ride and educating the younger generation may have been the primary goal of the documentary's cast and crew, but what they accomplished was something even more profound. Darius Goes West is a portrait of the good that can exist in people. The cross-country trek chronicled by Smalley is not just the journey of Weems, but of the other 10 young men who piled into an RV to serve as crew members, caregivers and friends. Including Weems, over half of the documentary team was under the age of 20, including Smalley's younger brother Ben, 18. The oldest person on the crew was Daniel Epting, 24. The group not only handled the camera and sound equipment, they cared for Weems, helping him with day-to-day tasks like using the bathroom.
In the Portland metro area, there are 63 boys and one girl currently registered with the Muscular Dystrophy Association under the DMD diagnostic code. Koby and Kaden Willis are two of those kids. Diagnosed at 7, Koby was still riding his bike at 9, but by 10 he was in a wheelchair that cost more than a Volkswagen Jetta. Now, at 14, he has only limited use of his arms. His mom Sheila, a full-time mother and wife, lovingly compares his physical ability to that of an overcooked noodle. Unable to get in or out of bed by himself, Koby is dependent upon others for even the most basic daily tasks at an age where most kids are just starting to gain real independence. The kids live in Banks, Ore., with Sheila and their father, Ed.
By comparison, Kaden, 6, has yet to need a wheelchair, is still very physically active. He struggles to keep up with the other kids on the playground at school, but you would be hard-pressed to know there is anything wrong with him.
"If you didn't know what signs to look for, you would just think Kaden is uncoordinated," says Sheila. And while Koby never asks about DMD, preferring to take life one moment at a time, Kaden is brimming with questions—he asks his parents when he will be getting a wheelchair like his older brother's. Seeing what DMD has done to Koby has prepared Kaden for what the future holds. "He knows this as part of his everyday existence," says Sheila.
Although neither side of the Willis family has any history of muscular dystrophy, both of their sons have DMD. "We crapped out in the gene pool and came home with two wonderful children that will, unfortunately, not get to have a long life," says Sheila. "But that doesn't mean that it cannot be a full one." Though some might be put off by her candor, Willis is simply being honest.
If you talk to enough parents of children with DMD, eventually they all say the same thing: "It's a race against time." For those parents with children in their teens and older, that race ends with the inevitable passing of their child. There is no way to reverse the muscle damage that DMD causes. While DMD affects different people in different ways, degeneration occurs because the gene affects the body's ability to create the protein that feeds muscles. This causes the muscles to first grow weak (or not develop properly), then waste.
Though it may seem like an unrealistic goal, some experts firmly believe that a cure to DMD will be found within the next 10 years or so.
The hope for finding a cure or treatment for DMD isn't just some Touched by an Angel fantasy of desperate parents. While other diseases are caused by a series of defective genes or environmental factors, DMD is caused by a single mutated gene. In 1987, scientists discovered the gene that causes DMD, and ever since then, finding some form of a cure has become a realistic prospect.
"I try to be realistically optimistic," says Dr. Barry Russman, a neurologist at the Portland Shriners Hospital for Children who has worked with DMD patients since 1971. Over the past three decades, through various breakthroughs in research and treatment—such as steroid treatments to help strengthen weakened muscles—life expectancy for DMD patients has increased by nearly 10 years. "If you look at where we have been, where we have gone and where we are going, there is reason to be hopeful," Russman says.
"If it were only the parents of children with DMD and the experts who devote their careers to DMD who were optimistic, I'd be morbidly depressed," says Dr. Benjamin Seckler, a Massachusetts radiologist. "However, the biotech and pharmaceutical industry are very interested in DMD and are starting to invest significant money and expertise."
Seckler's son Charley was diagnosed with DMD in 2004. "When you are dealt the tragic news that your child has a fatal disease, you can't believe how quickly one gets up to speed to do whatever it takes to save his life," says Seckler. Four months after his son's diagnosis, Seckler and his wife, Tracy, launched Charley's Fund, a nonprofit that raises money specifically for research. Where the Muscular Dystrophy Association raises money that is distributed for a variety of purposes—primarily to help families like the Willises cover the tremendous financial burden that comes with DMD, which can exceed $100,000—Charley's Fund only puts money into finding a cure. The nonprofit raised $2.5 million in 2005-06, approximately $1.2 million in 2006 alone (the MDA's total revenue last year was $200 million, with a third of its $30 million research budget earmarked for DMD studies).
More than the hope of finding a cure, Russman emphasizes the importance of quality of life. And while being diagnosed with DMD comes with certain unavoidable physical truths, life does go on, as evidenced by Portlander Scott Hatley.
At 27 years old, Hatley could be considered an old man among DMD sufferers. Even if he weren't in a wheelchair you could describe Hatley as skinny, but the chair makes him appear frail. Much like Lou Gehrig's Disease, DMD affects the body's ability to function but preserves the brain's ability to process. Patients are aware of what is happening to their bodies at all times. Physically, Hatley needs help with many of life's more mundane tasks—from taking a shower to getting dressed. Despite his physical limitations, he is not so weak that he can't feed himself, or brush his own teeth, and his disabilities do little to hinder his independent spirit as he traverses the city. The electric wheelchair he uses to get around has a bumper sticker on the back that reads, "Handicrap."
"'Handicrap' is anything that keeps a person with disabilities from moving forward with their lives," explains Hatley with a smile. "But it can apply to anyone, not just someone with disabilities, who uses excuses."
Growing up in West Linn, Hatley was raised—his DMD diagnosis notwithstanding—in a privileged environment. His parents cared for him, protected him and, most importantly, provided him with the resources and encouragement to make something of his life. "It was never a question of if I would go to college, but where I was going to go to college," explains Hatley from his downtown office overlooking the north Park Blocks.
Hatley is in the small minority of Americans with disabilities who go on to college and start careers. Based on the U.S. Census Bureau's numbers, there are over 54 million Americans with disabilities. Only 16 percent of those with disabilities graduate from college, and only one in five people with disabilities are employed full time. For Hatley, who graduated from University of Portland, those numbers are unacceptable.
In 2003, along with Vail Horton, a friend from college, Hatley started Incight, a nonprofit that helps those with disabilities get into college, find jobs and become active members of society. For many with disabilities, the thought of a "normal" life seems impossible, leading many to give up before they even try. But Hatley refuses to accept that any life is without meaning. "Everybody has some sort of purpose," he says. Even being diagnosed with something like DMD is not reason enough to give up. "It's not really the end of life. It's always important to keep moving forward."
Every day we are bombarded with news that ranges from the tragic to the trivial. If our souls are not being battered by the horrors of war in Iraq or the destruction of New Orleans, our intellect is being eroded by American Idol. Even MTV, which prompted Generation X to speak out against apartheid in South Africa, fight famine in Ethiopia and rock the vote in America throughout the 1980s and '90s, has given way to an endless barrage of reality shows that have little to do with reality. Twenty years ago MTV was planting the seeds of revolution in the minds of suburban youth. Now it is a corporate dope dealer slinging cathode-ray opiates that keep young people vapid and informed of little of merit.
But the power to change the world never really existed in MTV or the network news. Those were just outlets to report about the people in the streets working to make the world a better place. The power has always been in the hands of people like Scott Hatley or director Logan Smalley, Darius Weems and the rest of the Darius Goes West crew. With great intentions and nobility they thought getting onto Pimp My Ride would make a difference, and they documented what they did. But even MTV could not do what Darius Goes West does, and that is capture a sense of true humanity. Ultimately, the documentary is not about getting Darius' wheelchair pimped out. It is about people taking the time to genuinely care for one another and not giving in to the obstacles life throws your way. "The first time I sat down in this world is the last time I sat down in this world," says Weems in the film. "I was smiling that day and I'll be smiling when I leave. Because when I die, folks ain't gonna say, 'Darius is gone,' they're going to say, 'Darius went West.'"
It is important that people realize I'm not placing DMD ahead of leukemia, AIDS, cancer or any other terrible disease. The point of this story is that under the right set of circumstances, film can not only be the most powerful medium in the world, it can be a wonderful gift. Four months ago, I knew next to nothing about muscular dystrophy, let alone DMD. It is easy to take the moral high ground when you acknowledge that there is something called muscular dystrophy, or AIDS, or genocide in Sudan, and make a tax-deductible donation to the appropriate charity. Armchair activism is as difficult as writing a check. But, sooner or later, as Darius Goes West so profoundly states, you have to "know about it." And that's why I'm inviting Portlanders to "know" Darius through his documentary on the opening night of WW's Longbaugh Film Festival. And, yes, since showing the film is not enough, this screening of Darius Goes West will also act as a benefit fundraiser for Charley's Fund.
Of the films that were eventually selected for Longbaugh, several made strong emotional impressions (see sidebar, page 27). But there was something different about Darius Goes West. Maybe it was Weems' infectious laugh as he set foot into the ocean for the first time in his life. Or maybe it was simply the fact that the film was a gentle reminder that the worth of a person's life is not measured by how long they have lived, but what they did with the time they were alive. Whatever it was, I would like to believe it has helped me to become a better person.
Darius Goes West: The Roll of His Life opens the Longbaugh Film Festival Thursday, March 29. The film screens as a benefit fundraiser for Charley's Fund, a nonprofit dedicated to raising money to fight Duchenne muscular dystrophy. Living Room Theaters, 31 SW 10th Ave. Doors at 7 pm, film starts at 8 pm. Q&A with director Logan Smalley and other crew members immediately following. Scott Hatley and Dr. Benjamin Seckler will attend as well. $35. Encore screening 12:30 pm Saturday, March 31, at Laurelhurst Theater. $8. Visit longbaugh.com for a full schedule of Longbaugh Film Festival screenings, venues and pricing information.
TEN THINGS I LEARNED FROM LONGBAUGH THIS YEAR
There are more than 100 features, shorts and documentaries screening this weekend at the Longbaugh Film Festival (Thursday-Sunday, March 29-April 1). The opening-night documentary Darius Goes West had a tremendous impact on me, but that was not the only film with lessons to be learned. Here are 10 films with valuable lessons screening at Longbaugh. (See page 62 for screening times.) DAVID WALKER.
Commit—When talented people decide to make a feature film, and really apply themselves, they can accomplish a whole lot with very little.
Facing Sudan—Individual people can make a difference, even in a country like Sudan, where violence and genocide have wrought devastation.
Finding Normal—If you're trying to beat substance abuse, it really helps to have a former addict in your corner who refuses to pull any punches.
Love Lived on Death Row—The power of love can go a long way to heal and forgive, even when your father is on death row for killing your mother.
The Nine Lives of Tomas Katz—You don't have to be stoned to feel like you're on drugs.
PEZheads: The Movie—For some people, PEZ is more than just a candy that shoots out of tiny plastic heads.
Rain in a Dry Land—Fleeing a war-torn country like Somalia and coming to America does not mean that life will cease to throw challenges at you.
Room 314—Nothing is more crucial to a film than good writing. Even a movie of people sitting in a room can be interesting if the script is well written.
Secret Wars—The price of freedom and democracy is incredibly high. It's enough to make you wonder what freedom will do to Iraq.
Top-Secret Screening—I can't tell you what the name of this film is, but the actor who recently won an Oscar for portraying Idi Amin gives a supporting performance that is one of his most memorable in years.
To learn more about muscular dystrophy and what you can do, go to mdausa.org, charleysfund.org and incight.org For more information about films screening at the Longbaugh Film Festival, go to longbaugh.com. Festival passes ($6-$45) are available at WW, 2220 NW Quimby St.; Clinton Street Theater, 2522 SE Clinton St.; Laurelhurst Theater, 2735 E Burnside St.; and Living Room Theaters, 341 SW 10th Ave.