Adaptive Athletes Take On Hood to Coast

On August 26 and 27, 1,046 teams finished the Hood to Coast relay race in Oregon, one of the most popular running relays in the world. The race starts at Mount Hood and goes west for 198 miles, finishing along the Pacific Ocean at Seaside.

One of these 1,046 teams featured 12 adaptive athletes: Several are amputees who run on prosthetic legs, one is blind, two have spinal cord injuries and race in push-rim wheelchairs, and others have different physical challenges. The 12 of them took turns covering the 198 miles from Mount Hood to the coast.

Each athlete’s road to Mount Hood—and to sports in the first place—is different. While growing up, some of them had no idea that becoming runners and endurance athletes could be an option for them, and they got the equipment and support they need to do so relatively recently. Others have been competing in sports since they were young kids. They include professional athletes, Paralympians, triathletes, and beginners to running, plus one guide and one prosthetist.

About 20,000 people participate in Hood to Coast, and about 1% of them are athletes with disabilities, estimates Dan Floyd, COO of the Hood to Coast Race Series. Athletes with disabilities who participate in the event often have teammates who don’t have disabilities. In some years, the race has one or two teams of blind athletes, but this team may be the first consisting completely of athletes with a mix of disabilities. Floyd says he’s unaware of any other team like them.

The team’s name is Forrest Stump, named after a nonprofit that one member of the team, triathlete and amputee Nicole Ver Kuilen, founded with prosthetist Natalie Harold to advocate for amputees. Along with Ver Kuilen, the team includes Jamie Brown, Mary Kate Callahan, Scott Davidson, Ashley Eisenmenger, Lina Garada, Josh George, Mallorie Hoyos, Leah Kaplan, Dee Palagi, Patrick Pressgrove, and Travis Ricks, plus prosthetist Harold and guide Anna Griessler.

Most of these athletes were either born with their disability or acquired it as children or young adults. Some lacked the equipment they needed to play sports and be active as kids, because insurance companies typically don’t cover it—they deem it not medically necessary. For a kid whose leg has been amputated, for example, most insurance companies cover a walking leg but not one made for swimming, biking, or running.

These athletes know the physical and mental benefits of being active and participating in sports. So, in conjunction with their race, they partnered with the American Orthotic and Prosthetic Association, the National Association for the Advancement of Orthotics and Prosthetics, and the American Academy of Orthotists and Prosthetists to launch a campaign called “So Kids Can Move,” to get states to require insurance companies to cover recreational prostheses for kids.

In May, Maine enacted a law requiring insurance companies to cover prosthetic devices for kids’ recreational purposes, such as running, biking, and swimming. It’s the first state to do so, at the urging of amputee Jordan Simpson and Maine state Rep. Colleen Madigan. Now, the So Kids Can Move campaign is working to get similar legislation passed in Washington and Oregon and then expand to other states.

When Access Is Out of Reach

Nearly half of adults with disabilities get no aerobic physical activity, and adults with disabilities are three times more likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities, according to the Centers for Disease Control and Prevention. So Kids Can Move wants to spread the message that people with disabilities deserve the right to exercise, but lack of insurance coverage for medically necessary assistive devices and care prevents equitable access to participation in physical activity.

The cost of adaptive equipment like prosthetic limbs and wheelchairs varies, especially because prosthetic limbs must be highly customized for and fitted to the individual. Ver Kuilen says that, as a below-the-knee amputee, her running prosthesis costs between $12,000 and $15,000. The Veterans Administration typically covers prostheses like running blades, but most health insurers do not. Most athletes with a running blade have funded it themselves or received a grant from a nonprofit like Challenged Athletes Foundation, which is how Ver Kuilen received her running blade.

For years, Ver Kuilen ran on a prosthesis made for walking, which broke frequently and caused her back pain.  In 2017, she completed her own personal 1,500-mile triathlon along the West Coast on her walking leg to raise awareness for amputee rights. Upon completing the triathlon, the Challenged Athletes Foundation gave her her first running blade at age 26.

Ver Kuilen lost her left leg below the knee to cancer at age 10, which made it hard to be the active kid she had been before that. “The confidence that came from having access to a running prosthesis has completely changed my trajectory as both an individual personally and professionally,” she says. She has since summited Cotopaxi, a volcano in Ecuador; become a Paratriathlon National Champion in 2019; and been named to the USA Paralympic Development Team in 2020.

Although nonprofits like the Challenged Athletes Foundation are essential in getting many people the devices and care they need to be active, people shouldn’t have to rely on nonprofits for that, Ver Kuilen says. And many people with disabilities don’t know these nonprofits exist, she says. “This is a system level issue, and it’s not something that nonprofits can just solve.”

Patrick Pressgrove agrees. He was born with a rare genetic disorder that affected the development of his legs and feet and resulted in a cleft lip and palate. “I had a lot of operations to help me walk. I couldn’t walk until I was six, and even then, my legs were malformed, so I could never really get around normally. And by the time I was 13, I had severe arthritis in both of my knees,” Pressgrove says. “So when I hit the age of 14, it was either continue like that or have elective amputations.” He decided to have his legs amputated above the knee to preserve his health and quality of life.

“I wasn’t even aware that running as an amputee was possible until I was in my mid-20s,” Pressgrove says. “If my family had known that insurance would have stepped in to help cover the costs, if not the full cost, they may have pursued that a lot sooner for me in my childhood.”

Pressgrove received his running prostheses from the Challenged Athletes Foundation in 2015 and ran his first race in 2016, after joining Team Catapult, a nonprofit that supports physically challenged people in endurance sports. Since then, he has run half-marathons, marathons, and a triathlon and has become a leader in the Houston running community. He founded Freaks Run Club in Houston, is now COO of Team Catapult, and has run the 200-mile Texas Independence Relay with teams of adaptive athletes.

Pressgrove ran Hood to Coast in 2021 and didn’t notice any athletes with visible disabilities. At their race this year, the team noticed two other adaptive athletes.

A common thread with many of these athletes is that sports boosted their confidence. Leah Kaplan was born in China with a congenital limb difference—she is missing her left arm below the elbow, and she was abandoned when she was two days old because of it. When she was a kid, her mother encouraged her to try swimming, and she loved it. But, she says, “I would hide my arm during some sporting events, just because other people were uncomfortable.”

She stopped hiding her arm and competed around the country in para swimming in high school, appreciating the community she found in other athletes with disabilities. More recently, Kaplan also started competing in triathlons, and this past summer, she received her first-ever prosthesis, which makes it easier for her to bike safely. “Sports have taught me how to embrace my own uniqueness,” she says. “And don’t quit until you’re proud of yourself.”

Making a Team for Hood to Coast

The idea to put together a team of adaptive athletes to participate in Hood to Coast originated with Ver Kuilen and Palagi, both lower-limb amputees, in 2019. “We wanted to assemble a team of people with all different types of disabilities, and showcase what it is that we can do when we have access to appropriate prosthetics, orthotics, and wheelchairs—and all the adaptive equipment that’s necessary specifically for physical activity,” Ver Kuilen says. They registered a team, but the 2020 race was canceled because of COVID-19, and then they deferred in 2021 because of the ongoing pandemic.

But 2022 was a go. So they started planning. An overnight relay that requires vans is a logistical challenge for any team, but Forrest Stump needed an extra van for their push-rim wheelchairs and bike guides, Ver Kuilen says. “You just add on another layer of complexity, figuring out which exchanges are accessible, which ones aren’t, how we’re going to coordinate handoffs and getting people their equipment.”

They pulled it off. “We essentially set a precedent for what was possible at that race, as far as people with disabilities or just the logistics around it, because it was a lot of work. And we showed that it can be done,” Pressgrove says. Their race might serve as an example for Hood to Coast officials and for future participants with disabilities to follow.

They also forged a bond among athletes with disparate experiences, supporting each other along the way. “I already knew I loved everyone in this community, and I knew what we were capable of,” Pressgrove says. “It was fun to watch people realize that about themselves.” When one of the athletes completed a leg of the race, it was his longest run ever, he says. “So that was really cool, to watch them realize what they’re capable of.”

Kaplan says she appreciates the camaraderie and the way the team motivated each other. “Being part of the team felt very empowering,” she says. “I just loved walking around with the team and kind of repping Forrest Stump. I feel like we’re kind of like our own Avengers team.”

Because the team included people with different levels of athleticism, their participation also shows “that these types of events aren’t just for Paralympic athletes—they’re for anybody with a disability that wants to be involved in an adventure that is Hood to Coast,” Ver Kuilen says.

Meeting Other Competitors

On the second day of the race, Pressgrove says, “All the teams kind of catch up to each other, so you run into a whole lot of people at all the handoffs, so the last four or five handoffs were just like a party every time you stop. It’s a really fun atmosphere.”

Many of the people the team encountered on the course were encouraging and supportive, and some asked about So Kids Can Move. The Forrest Stump team met some people whose family members have disabilities, so they made some connections with the nonprofits that they’re involved in and that might be able to help.

“Overall, it was an enormously positive and uplifting event,” Ver Kuilen says.

But not all their encounters were positive. On the course, some other competitors stared at the team, laughed, and yelled at three of the athletes. Someone called a wheelchair racer a cheater because she wasn’t running. Someone else yelled that they couldn’t believe they were being passed by a blind person.

“One guy I passed up in the middle of the night yelled out, ‘What the f—?’” Pressgrove says. “I don’t think he understood what he was looking at. We were running in a pitch black, and I ran past him pretty fast.”  “There were a number of comments that were made that made our team feel very ‘other’ and like we weren’t expected to be there,” Ver Kuilen says. “People just were so startled by our presence.”

These reactions from fellow athletes may show that they lack awareness about adaptive athletes. But they solidified the team’s determination to show up and try to ease the way for others. They have been through much bigger challenges than ignorant comments.

Athletes with disabilities are often told they’re inspiring, and some people said so to the Forrest Stump team. “We were like, ‘Oh, thank you. But you know, we’re doing the run just like you guys,’” Kaplan says. “I’ve been told I was inspiring for even ordering food at a restaurant.”

Pressgrove agrees. “It’s great to inspire people, but we’re not out there for that. We’re just trying to be a part of the same community,” he says. He appreciates when people share positive comments, but he hopes they take it further—by spreading awareness of So Kids Can Move, for example. “And the next time you come across someone that could benefit from any of these nonprofits, or just meeting another athlete that has a similar disability, hopefully take that moment and say, ‘Hey, I know someone I can connect you to.’”

Identifying and Removing Barriers

The Forrest Stump team praised the Hood to Coast staff for being accommodating and responsive when problems arose. But the team ran into some obstacles, including not having an ADA accessible porta potty or bathroom anywhere on the course, which one of the athletes needed. So she had to restrict her water intake. Also, the race ended on the beach in the sand, which was not accessible for some of the athletes. “So our team ended up having to leave Seaside early and just kind of had our own celebration party,” Ver Kuilen says.

Since the relay, Ver Kuilen has joined Hood to Coast’s Inclusion and Multicultural Engagement Advisory Committee, where she looks forward to representing the disability community and helping to make the race more diverse, equitable, and inclusive.

Floyd says that the Forrest Stump team pointed out some areas where the race can make improvements. “And we will definitely make changes. We invite it,” he says. Having Ver Kuilen on the committee gives her and the disability community “a voice within our event, which means she has a voice within the race industry,” he says.

“Our number-one message is to get the world to move,” Floyd says. “We want everybody to move, participate any way they can,” so he sees it as Hood to Coast’s responsibility to help show that adaptive athletes can participate. “We have to create an inclusive environment where people know that,” he says.

Ver Kuilen notes that more triathlons have been made accessible to paratriathletes. “There’s a checklist that race directors can go through to make sure that things are accessible,” she says. And some races are adding adaptive or para divisions. The 2021 Boston Marathon was the first of any of the Abbott World Marathon Majors to include a competitive para athletics division for ambulatory para athletes, alongside its wheelchair division. Zachary Friedley created a Born to Adapt trail run for adaptive athletes, as part of the Born to Run Ultra festival.

The Forrest Stump team is proud of what they accomplished—and the space they hope they created for more adaptive athletes to come after them.

“When I think of my journey as a person with a disability, I did not have this community or this camaraderie growing up. I really was the only person with a disability I ever knew,” Ver Kuilen says. “So being able to do this race alongside people who’ve had a similar life experience and trajectory, and just that community, is really special.”

Being in vans with people for 36 hours, while pushing yourself physically and supporting each other through challenges, is a special kind of experience. “You might not be family when you go in, but you are when you’re done,” Pressgrove says.