Multimedia: Darius Goes West Carnival 2

Photos: Devyn Post, Emily Soroka, Alaina Boyden and Toju Mikie
Soundslides: David Garcia, Emily Soroka and Paxton Swisher

Multimedia: Darius Goes West Day Carnival 1

Photographs by Devyn Post, Emily Soroka, Toju Mikie and Alaina Boyden
Soundslides: Nicole Alanko, Suleiky Guerrero, MaLea Berry and Thomas Colantuono

Big Daddy Weems

By: Olivia Baker & Ella Sivertsen, M&M TIPsters


Darius Weems. A man on a mission: raise awareness about his condition. The 20-year-old Athens resident with Duchenne Muscular Dystrophy wants the world to know about the number one genetic killer of children in America. Duchenne Muscular Dystrophy, or DMD, is a disease that deteriorates the muscles in the body, taking the ability to walk, do basic physical activities, and eventually, the victim’s life. Darius lost his brother Mario to DMD when Mario was nineteen. For this reason, in 2005 when he was fifteen, Darius and his friends created the film Darius Goes West about his journey from Georgia to California to get his wheelchair pimped on MTV’s "Pimp My Ride."

Mario was the most significant inspiration for Darius to make the trip to California. Darius says that Mario never let DMD stop him from being joyful and moving forward. “When life got hard and my brother was still happy, and he still kept the smile on his face, it kinda makes me want to keep on living and not think about the bad things and just be happy for what I’ve got," he said. This encouragement motivates Darius to get out there and make some good out of what he has. It’s certain that Darius aspires to be like his big brother and to carry on Mario’s legacy. Now, with DGW, Darius can carry it on in a much larger impact than he thought.

“We took this trip and thought it was a silly trip for me to get out of the house and stuff and we became, like, big movie stars,” Darius said. “None of us expected it to get this big.”

Since the movie, Darius finds that he is very busy with interviews and appearances. Whether it’s a Skype chat or a TV show, Darius is constantly spreading the word. To those who want to make a difference like he does, he said, “If you have something you’re passionate about, bring it to the people. Without the people you have nothing.”

His wit and positive outlook on life help everyone, healthy and disabled, young and old, to look to the future with hope, live in the moment, and smile.

Obviously, Darius is more famous than ever. “It just feels good that I’m famous for a reason,” hesaid. “People recognize me for all the things that I’ve done.”

Darius now has many opportunities to continue the domino effect. Last year, he traveled to forty-seven out of the fifty states. He’s appeared on several television shows, including The Ellen DeGeneres Show, and has met celebrities including Kanye West, William H. Macy, Robin Williams, Ben Affleck; he’s even received a letter from Beyonce Knowles. Fame hasn’t changed him; he uses it to further DMD awareness.

Soon, in fact, he hopes to develop a rap career, using his music to earn funds for a cure. Darius started rapping at age 15 before filming Darius Goes West. Over the past five years, he has written about five studio raps, including “On a Mission” and “Momma I Made It.” His songs are inspirational because of how they pertain to what he’s been through. He has been working with a producer and has some recording equipment at home. He hopes to release an album once he has enough songs out there.

Being a rapper, Darius himself appears to have a certain swagger. On the day of the interview, he wore black jeans, a black shirt, a black hat, and a cross necklace. On a new diet plan, he’s slimmed down over the past few years. He seemed rather quiet, but conversational, and still had that good humor about him and laughed on several occasions. Darius has definitely matured even more in wisdom since he began publicizing his message on the big scale; nevertheless he is friendly and likes to smile.

About the documentary: When Darius was young and his mother told him of his condition, he didn’t understand fully at first. What it meant to him was simply that he easily suffered from fatigue and was slowly losing his ability to walk and to do strenuous activities. It didn’t get Darius down. Being confined to a wheelchair from the age of ten years didn’t change his charismatic, social personality. He enjoyed making friends in school and at his camp for those with disabilities. At camp, he was so loved by all of them that he considered himself more of a counselor than a camper. He befriends almost everyone he meets, including his “brothers”, Andrew “Corn Rows” Carson, Ben “Darius’ Little Do-boy” Smalley, Collin “Diaper Baby” Shepley, Daniel “the Crazy Driver” Epting, Dylan “the Eye” Wilson, John “T-Barn” Hadden, John “Lawn Chair” Harmon, Jason, “that Other Big Scary Guy with Long Hair” Hees, Kevin “Weird” Weir, Logan “the Boss” Smalley, and Sam “Doesn’t Have a Cool Nickname” Johnson, who went with Darius “Big Daddy” Weems on the journey of a lifetime.

Then he and his friends set off, and Darius was excited. He had never been out of his county, and now he was embarking on a trip across the country with his closest friends, to experience things and see sites he never had before. Athens let them out with style, declaring that day, July 22, the official Darius Goes West Day. Darius was fueled by his anticipation to try new things, and even when there were problems with the bus, wheelchair accessibility, and the wheelchair, he kept an open mind at all times, always with good humor and joy. He loved every event of the trip, especially the Grand Canyon. “Coming from home all the way to the Grand Canyon… it was, like, pretty emotional,” Darius says. Although MTV refused to “pimp” his wheelchair, Darius still made and makes an impact by showing the world that DMD can’t stop him from changing it.


Darius at a Glance:
Favorite city: New York City
Favorite video games: NBA2K, Call of Duty, Modern Warfare
Favorite basketball player: LeBron James
Favorite team(s): Cavaliers, but is going to change to Miami next year.
Favorite rapper: Nas
Favorite place he’s visited: Grand Canyon
Favorite food: Meat Lover’s Pizza (definitely not wasabi!)
Favorite color: Black
Favorite film: Darius Goes West!

A Life with Duchenne Muscular Dystrophy

By MaLea Berry, Paxton Swisher, and Kathy Garner
M&M TIPsters

Judging by the look on his face, it is apparent that Darius Weems does not let his disability get in his way. Even in the face of the number one genetic killer of kids, this 20-year-old Georgian still lives his life to the fullest. Darius has Duchenne Muscular Dystrophy, or DMD. To the amazement of those watching, however, Darius--who had never left Athens before--went on a cross-country quest with eleven of his best friends to get his wheelchair pimped on MTV’s "Pimp My Ride." A documentary was made about the trip and the movie was dubbed “Darius Goes West.” The main purpose of this trip, however, was to raise awareness about DMD.

According to Medline Plus, symptoms of the disease usually focus on the loss and degeneration of muscle function. Those diagnosed usually lose the ability to walk by age 12. However, immobility such as bed rest is not recommended, as it can make the disease worse. Other symptoms include an abnormal heart muscle (known formally as cardiomyopathy), enlarged calf muscles that are eventually replaced by fat and connective tissue (known formally as psuedohypertrophy), deformities of the chest or back such as scoliosis, and respiratory disorders such as pneumonia in later stages of DMD. Less common, but still present in some cases, are varying degrees of mental retardation, congestive heart failure, and irregular heart rhythms (arrhythmias). There is no known cure, but gene therapy may become available in the future.

There's more to Duchenne Muscular Dystrophy than just the physical component. Yes, you lose your ability to pick up your favorite toys, or hold your new puppy, or even turn a doorknob by yourself, but there's also an emotional aspect of the disorder that makes the life of a person with DMD much more complicated. Imagine having your mind set on doing an action as simple as grasping something with your hand and picking it up. Now imagine the frustration that would rise up through you if you couldn't get your hand to clamp your fingers on it.

In the documentary Darius Goes West, Darius tries to hold the phone up to his ear while talking to his mom, but when it falls to the floor, he can't bend down to get it and has to ask his friend to do it for him. When he goes to take a drink, he holds the glass in his mouth and has to 'throw em back' in order to drink it. Even then Darius remains upbeat.

“It really didn’t get me down,” he said. “I felt like I couldn’t let it beat me down or I could just live. I felt like just living with it and not thinking about the bad parts of it would help me get through everyday life.”

Anna, a blogger in an anonymous DMD support group on Experience Project, explained in a blog post about having Duchenne, "The biggest way the DMD has affected my life is my relationships with others. It has made me not very confident and afraid of what people will think of me if they found out I have DMD.”

Dealing with the disorder causes people to have to grow up just as rapidly as their disorder attacks them, and life becomes more precious when you know you don't have a good chance of living for long. The average life expectancy for a person with DMD is somewhere between their late teens/early 20s to around age 30.

Some people, though, don't let their disorder dictate what they do with their life. Josh Winheld, author of Worth the Ride, was diagnosed at age 4 and by the age of 10 he was wheelchair bound. In his book, he wrote, “I believe society often underestimates the complexity of living with a disability-the joys, the challenges, the ordinary, the extraordinary..." and went on to explain how he wanted to thank his family and friends for helping him without rendering him useless.

Anna, who experienced the rarity of being diagnosed as an adolescent, said that she looks to God for guidance and strength. She may not have much in her arms and legs, but "the strength of her faith" she said, really helps her get through her bad days, when she feels afraid of "not being able to have any independence".

Kathy Garner, 15, is a sophomore at Ursuline Academy in Dallas, Texas.
Paxton Swisher, 15 years old, is a sophomore at Parish Episcopal School in Dallas, Texas.
MaLea Berry, 15, is a sophomore at Paideia School in Atlanta, Georgia

Wheelchair Accesibility Through the Years

By Nicole Alanko and Kathy Garner, M&M TIPsters

“Accessibility is a bigger challenge than anything.” Darius Weems would know. As a 20-year old with Duchene Muscular Dystrophy, the Athens native has traveled the country spreading the word about his disease, and showing people about life in a wheelchair.

“It was random places that were more accessible,” Darius said. “It varies from different places I go to. I like to go to places that aren’t accessible so that if they see me, like a real person, they’ll want to change it. If they see me, they’ll be inspired to change it.”

Darius is one of the more famous people that is trying to change wheelchair accessibility. It’s a fight that picked up momentum in 1932 with the invention of the first folding wheelchair. This wheelchair was called the Everest and Jennings chair. Before this time, wheelchairs had been heavy and it was difficult for people with disabilities to leave their homes, so accessibility to public buildings was not an issue. After the invention of the Everest and Jennings chair, however, disabled people were able to put their chairs in their cars and go anywhere. This was how the Disability Rights Movement began.

With advancements in medicine, more people were living through serious injuries that normally would have caused them to die. Many of these were veterans of the World Wars, who then began to protest in America for more rights and more access to public places.

The Americans with Disabilities Act was originally passed in 1980, with revisions made in 2008. This Act was meant to enforce stronger legislation pertaining to the rights of people with disabilities. It discusses employment, access to buildings and public transportation, and communication devices.

“No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation,” according to the Act.

The full Act itself is very simple, with specific guidelines. Sections 1, 2, and 3 are all general knowledge sections. They detail the purpose as well as general information and vocabulary used in the remainder of the document. Section 4 details the minimum requirements of areas, including but not limited to curbs, stairs, toilet stalls, water fountains, and saunas, to make them handicap accessible, including exceptions. Sections 5 through 15 specify requirements for specific areas, such as restaurants, libraries, and medical care facilities.

This was an extremely important piece of legislation that laid the foundations for new changes to come. While after twenty years, not every building is wheelchair accessible, change and success will come. Darius himself does not advocate for any specific legislation.

“Accessibility is dependent on the owner,” said Amble Johnson, a writer for the Darius Goes West organization. “People will want to change. They’re just ignorant.”

Nicole Alanko, 16, is a Junior at Riverheads High School in Staunton, VA.
Kathy Garner, 15, is a sophomore at Ursuline Academy in Dallas, Texas.

Other Resources:
http://www.ada.gov/cguide.htm
http://www.ada.gov/
http://www.ada.gov/adastd94.pdf

Darius Goes West Carnival Overview

By: Suleiky Guerrero

M&M TIPster

Another Annual Darius Goes West Day (DGW) that was as good as expected. This Saturday, July 24, was the Darius Goes West Carnival in Athens, Ga. There was music, face painting, water bounce houses, basketball, the Goslabi Challenge—where contestants swallow a spoon of the sushi spice wasabi—mechanical bull riding, animal petting, horse rides and a dunking booth for the mayoral candidates.

Many people attended the event, including Darius' family, friends, visitors and the mayoral candidates.

“I laughed, I cried, it was great” said Kelly Freeman, a Darius Goes West Day volunteer from Sugar Hill, Ga., about the Darius Goes West movie. “They gave so much to him and he’s giving so much to us and doesn’t even realize it so the least we can do is give back.”

“It really touched me that actually the crew would take upon the cause that they did and decide ‘Hey, we’re going to do something about this,” said Freeman’s mother, Judy.

Dan Johnson who had met Darius before the movie also had a lot to say about him. “The job that he’s done raising money for the cause and that he’s stayed with it so long and really seen it through instead of just taking his trip and staying home after that, he has kept working, trying to fight the disease.” Dan brought his brother Phil Johnson, a spinal meningitis survivor from 1953 who also supports Darius’ cause, to the event on Saturday.

The candidates also had a lot to say. Spencer Frye, who is the director of Athens Area Habitat for Humanity and a mayoral candidate for the Athens elections, said he met Darius when he and his mother were looking for affordable housing. Not being able to build a house for them they sent them over to one of their partnering homing agencies, the Athens Land Trust. Here they were able to find Darius and his mom a home. The only problem was that the house was too small. The hallways were too narrow and wasn’t handicapped accessible, so they put up funds to build additions to the home such as the handicap ramp and widening the doorways.

“What he’s done and what folks have done around him is just inspiring,” Frye said.

Heidi Davison, Athens’s mayor when Darius left for his cross-country trip, was also there Saturday. “It’s a real unifying event that everyone can get on board with and feel like they’re a part of. So when you keep reading the story, folks that have been involved with it from the very beginning say ‘I’m a part of that’ and are proud of that,” she said.

Suleiky Guerrero is a Media and Message TIPster. She is also a rising 9^th grader at Westwood MOA in Port St. Lucie, FL.