by Heather Honaker for Little Rock Soiree magazine
Photo credit: Jason Masters
After they welcomed their second son into the world, he was carried away to the hospital nursery where doctors found he had a genetic defect that would try to dictate so much of his potential throughout his life.
Johnna and Alan listened to the specialists and researched what a life with Down syndrome would mean, taking in the statistics and learning about the trials that could lie ahead. In those first years, they certainly had no way of knowing their son would one day become one of the fastest Special Olympic swimmers in the world.
DS is caused by an abnormal cell division, and the result is an extra copy of the 21st chromosome. Where typical babies have two copies of this chromosome, babies with DS, or trisomy 21, are born with three.
There are distinct physical markers like facial and body appearance that come with a DS diagnosis as well as intellectual disability, developmental delays and other diseases that can affect the heart or thyroid.
People with DS are born with low muscle tone affecting every part of physical development from learning to suckle at birth to walking, and most will undergo physical, occupational and speech therapy beginning shortly after birth and on throughout their lives.
“People with DS are people first. My DS doesn’t define me,” Nathan says. He continues, quoting lyrics from a song called “Disability” that he helped write for his rap group TMZ Crew, “‘I may have DS but that don’t slow me down. No it don’t, no it won’t.’”
Photo credit: Jason Masters
AN OLYMPIC HISTORY
Beginning in the early 1960s, Eunice Kennedy Shriver’s backyard on her Maryland Timberlawn farm was transformed into Camp Shriver in the summers. Children with disabilities were bussed in to run, play, swim and ride horses in competition with their peers.
Pulling from personal experience with her sister Rosemary, Shriver knew people with intellectual disabilities were not “difficult,” “unteachable” or “belligerent” as their stereotypes had for so long represented, and she was an early champion for the truth that people with disabilities wanted to have fun and be loved like every other person in the world.
Shriver believed the comradery, responsibility, disappointment and achievement one learns from sports and rivalry – something her own Kennedy family understood well – could benefit the lives of people with intellectual disabilities.
Up until this point in history, people with special needs had been hidden away in homes or institutions. They did not go to school, did not work jobs and were not part of their community. Ignorance and misunderstanding led to neglect and shame. There were no programs in place to try to further their development in the world, and there was no support for their families.
Experts in the field of human development from Europe and North America worked along with the Joseph P. Kennedy Foundation, led by Shriver, and Camp Shriver. They were able to demonstrate that physical activities for children with special needs had a positive effect in classrooms and on their ability to integrate into society. The blueprints from camp were replicated so more children in other places could participate.
In 1968, Camp Shriver left Shriver’s backyard for Chicago’s Soldier Field where the first Special Olympics games were held. Athletes from all over the U.S. and Canada came together and competed in more than 200 events like swimming, field hockey and track during the one-day celebration.
At the end of the closing ceremony, Chicago Mayor Richard J. Daley turned to Shriver and said, “Eunice, the world will never be the same after this.”
BRIBERY & BUTTERFLY
According to Johnna, they tried for years to get Nathan interested in the pool. Combined efforts with many different teachers in many different pools all resulted in tears because he was just too afraid to go underwater.
“We were definitely not above bribes,” Johnna says, but after years of failed attempts, the goal resignedly became to just keep him safe around water in case he fell in.
One day while at the pool, Johnna watched as a middle school-aged Nathan tossed a ball back and forth with a friend in the shallow end. When the ball went over Nathan’s head and into the deep end, she could see the wheels of ingenuity turning.
“He really wanted to keep the game going,” she says.
Knowing the ball was in water that was over his head, she marveled as he put his fear aside, dog-paddled his way out to get the ball and then swatted it back into the shallow end while he quickly followed.
“I was watching, unable to believe what I had just seen,” Johnna says. “I congratulated him and offered him something he had been begging for for weeks – a basket of cheese fries – if he and his friend would go off the diving board. I knew I had to seize the moment and drive it home that he could do this.”
Nathan first started swimming on his neighborhood swim team and learned all of the four strokes – freestyle, butterfly, breast and back. Butterfly was his favorite.
“Not everyone can do the butterfly stroke, and I can,” Nathan says. “It is the hardest stroke to do. It involves upper body strength and core. It’s a total body workout to do in the water … using shoulder strength, it’s a lot of weight to pull through the body.”
Nathan was about 13 when he first competed at Special Olympics Arkansas. He had been working out with his local swim team for about a year and a friend, who was also a member of the swim team and the SOA, helped him get involved with Alan as his coach.
Nathan participated in several years of state games and SOA summer camps. Early during his senior year of high school, he was selected to go to the SO USA Games in Princeton, New Jersey. He trained his whole senior year for that competition and it paid off. His 50-meter butterfly earned the fastest time in the country.
The following year he was selected to go to the SO World Games in Los Angeles. While there, he met Michael Phelps, was hugged by First Lady Michelle Obama and took home a silver medal with his butterfly.
In addition to his win in Los Angeles, the highly-decorated Nathan also has two gold, one silver and four bronze medals from the National Games.
“The experience was a complete adrenaline rush. Every competition was better than the last. I got to meet athletes from all over the world,” Nathan says.
After the World Games, Nathan was nominated to join the United States Athlete Input Council with SO. He is currently serving in his second term.
“I sit on two boards associated with SO. One of them is a national board, and I’m one of 10 athletes in the nation who gives athlete input to this council,” he says. “I also help coach a SO swim team and I’m a health messenger with SO and I do public speaking.”
THE LIFESTYLE
“My goal is to stay fit for life,” Nathan says. “My workout routine is a combination of being in the gym and staying in the pool. I work on my core and my legs and do workouts that will help me with swimming. I’m constantly researching on YouTube and like to try new workouts and study proper form for my weight lifting.”
Nathan says he also works on diet consistency and making organic food choices. Healthy eating and physical training are both things he learns about through his work with SOA.
The mission of SOA is to provide year-round sports training and athletic competition in Olympic-type sports for all children and adults with intellectual disabilities. This gives athletes continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other SO athletes and the community.
According to Camie Powell, director of marketing and partnerships at SOA, more than 19,500 athletes and 16,000 volunteers from every county in Arkansas find opportunities with the nonprofit.
“SOA is changing the lives of people with intellectual disabilities, solving the global injustice, isolation, intolerance and inactivity they face,” Powell says.
Eight years ago, when Nathan joined SOA, Powell remembers first working with him at their Athlete Leadership Program training.
“The ALP trains athletes to hold meaningful roles as public speakers, board members, sport officials, coaches, photographers and more,” Powell says. “By participating in the SO movement as leaders, not just recipients of services, athletes help shape the public’s perceptions about what they can do and gain skills that help them excel off the playing field.”
Several times a year, SOA hosts meetings where athletes directly impact the planning of future events based on their ideas and feedback, participate in athlete spokesperson training and attend workshops to help guide them to be effective leaders. In addition, they learn about health and wellness through sessions centered around things like reading nutrition labels and smart shopping.
SO’s vision of its health program, made possible by the Golisano Foundation, is to create a world where people with disabilities have the same opportunities and access to health care as people without disabilities.
“Through this multi-layered effort,” Powell says, “SO is working to create a tipping point where health becomes inclusive for people with intellectual disabilities globally by changing curriculum, training health care professionals and policymakers, influencing policy, advocating for inclusive health programming, building partnerships for follow-up care and harnessing the power of the SO movement to build awareness.”
PASSING THE TORCH
Photo credit: Jason Masters
“I remember the first day I met Nathan. Shy, timid and not really excited to get in front of people to share his speech,” Powell says.
“One of my favorite moments in Nathan’s leadership journey was when he attended a Unified Relay pep rally at Dickey-Stephens Park prior to an Arkansas Travelers game. The SO 2015 World Games torch had made its way to Arkansas and was headed to Los Angeles.”
Nathan was asked to be down on the field, and just moments before the lighting, they asked if he would address the fans.
“Without hesitation, in fact with exuberance, he grabbed the mic and spoke to the stadium full of people, impromptu and full of energy. He came alive,” Powell says. “I have had so many moments with Nathan where the hairs stand up on my arms, where I am so proud that I choke back tears. I am so thankful I have those moments.
“He is a voice constantly telling everyone about the true abilities of our athletes. … He embodies the essence of a SOA athlete.”
But Nathan and Johnna credit SOA and Powell for so much of who Nathan is today.
“I feel so grateful to those who have taken time to teach, help, encourage and just give a chance to those who are differently abled. What they end up doing with that opportunity may not look like what the majority do with it, but it could ultimately be just as valuable,” Johnna says.
“I will always be blown away by [Powell] for finding opportunities to challenge Nathan. I will always be amazed by all the volunteer swim coaches we have had with SO. I will always be thankful for our schools and community who accept, encourage and value Nathan, regardless of what he accomplishes.”
When asked what motivates him to keep getting back in the pool, Nathan says, “I enjoy all the athletes and coaches and the atmosphere, and also competing with my fellow athletes. The volunteers and coaches that make it all happen; their efforts in going the extra mile and just by being there for us swimmers. They do a lot.
“SO is a place where you are challenged and a place to be yourself. … SO can be like a second family once you’re involved.”
Johnna adds, “To all the future swim coaches, school principals, volunteers and employers: Do what was done for us. Say, ‘Yes, let’s try that!’”
“Volunteer one time and you will be hooked for life” is a common saying at SOA. Visit specialolympicsarkansas.org for more information on how you can get involved.
This piece was originally printed in the August 2021 issue of Little Rock Soiree magazine.
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