It was the start of Susan and Jeffrey Bergeman’s first cross country meet at Chippewa Falls Middle School in 2018.  Sixth-grader Susan, who was pushing her brother, Jeffrey, in his specialized racing wheelchair, waited patiently for the referee to count off the start of their dual race – exactly one minute after the boy’s cross country team took off. As the only dual racers in the district, they were feeling the scrutiny of the spectators who all wondered the same thing: Why aren’t they running yet? Are they lost?

“I watched the referee walk away,” Susan recalled. “I was standing right in the middle of an open field, and it was awkward. ... I was emotionally in shock.”

    The referee had, apparently, forgotten to mark the start of their race. “It was very heartbreaking as a parent to watch,” said their mom Jess Bergeman. “And it was uncomfortable for the rest of the spectators to watch because it was just these two standing there after everybody else had taken off. That’s not inclusive.”

The Bergeman family is no stranger to  standing out from the crowd. In their family of 5, there’s Jeffrey, age 14, Susan, age 14, and Sam, age 9 – who was adopted from Ethiopia at only a year old – and parents Jess and Jordan – who have been married for 21 years. “We definitely don’t blend in,” dad Jordan Bergeman said. “Let’s just said that. And we’re OK with that.”

At the age of 22 months, Jeffrey suffered a sudden cardiac arrest, which led to brain damage due to oxygen deprivation. He was later diagnosed with cerebral palsy. Though Jeffrey uses a wheelchair and is nonverbal (communicating through shaking his head “yes” and “no”), it wasn’t long before his parents found out about his love of running.

In 2014, Jeffrey was paired with a Virginia-based runner through the national program Who I Run 4, which connected active runners with those who – due to physical limitations – can’t run. Jeffrey received medals from races, messages from his racing buddy with updates on her training. “I was like, you know, I need to get in shape and be healthy because he needs me in his life,” Jess said. “And if this person across the country can be doing this for him, certainly I can try, too. So that’s why I started running.”

“(Jeffrey) loved it. He lights right up, huge smiles, laughing the whole time.”

The family was quick to catch on. “(Jeffrey) loved it,” Jess said. “He lights right up, huge smiles, laughing the whole time.”

Jordan, a longtime sprinter, was at first averse to the idea of long-distance running. But once he saw Jeffrey’s excitement about racing firsthand, he was addicted.

“He always wins,” he joked. “I’ve tried harder and harder and he still beats me.”

Together, the father-son duo has raced hundreds of times, including several marathons and half-marathons, with big goals to run the Boston Marathon and Iron Man Triathalon. They’re well on their way, as they’ve already made the qualifying times for the Boston Marathon – they simply have to wait until Jeffrey gets a little older.

Susan, Jeffrey’s “Irish twin,” decided at the age of 10 that she too wanted to race with Jeffrey. At the time, she could hardly see over his tall racing chair. And Jeffrey and his racing chair have a combined weight of well over 100 pounds. But she was determined. “If I see something that looks challenging but fun, I want to do it,” she said.

When the pair started sixth grade at Chippewa Falls Middle School, they joined the cross country team as the first dual team ever to race in the district. This posed a challenge, the Bergemans said, as the Wisconsin Interscholastic Athletic Association – which creates the rules and guidelines for middle school and high school cross country in the state – didn’t have a precedent for racers with disabilities who wanted to compete in a dual team. At first, the organization told Jess and Jordan that their children could not race together, arguing it “fundamentally changes the sport,” the family said. “Not really,” Jess argued, “because she’s running. She’s choosing to make it harder for herself, but she’s not changing the sport.”

The Chippewa Falls Area Unified School District had a legal obligation (under the Americans with Disabilities Act of 1990) to provide programming to students with disabilities. With no alternate program for disabled athletes, WIAA had to create completely new guidelines, later determining it was safest for the pair to run only in exhibition – meaning the siblings both run noncompetitively in all of their meets. Their scores aren’t ranked. They compete only against their personal best scores, beginning their race precisely one minute after the boy’s cross country team begins its race – to ensure no overlap where a racer may be injured due to the large and difficult-to-maneuver racing wheelchair – and Susan and Jeffrey aren’t permitted to pass anyone who isn’t injured or walking.

“My main goal at every meet is to finish safely and have fun. But ... I don’t want to finish last.”

The only problem? Susan is too fast.

She quickly began lapping the slowest racers on the boy’s cross country team. “It hurts to try to stop,” she said. So rather than stop – risking injury to other racers and herself – she ignores WIAA’s rules and laps other racers, with safety at the forefront of her mind: for both herself, her brother, and other racers. “My main goal at every meet is to finish safely and have fun,” she said. “But ... I don’t want to finish last.”

“We feel like it robs the spirit of competition from all of the athletes when you do it that way,” Jess added, “because the (several) athletes she passed, if they were truly embracing competitive spirit, they would get one place higher in the official ranking than they know they deserve, because they know (Susan) passed them.”

But, competition isn’t at the core of their concern. It’s simply ensuring that every kid has a chance to do the sport they love. Now a freshman at Chippewa Falls High School, Susan affirms the inclusive environment has changed significantly since she first joined cross country. “I was joking around,” Susan recalled, “because it was a hot practice day, so I pushed the chair in front of me as a joke so I wasn’t touching it, and I was like, ‘Hey, who wants to push (Jeffrey)? And this one kid comes up and was like, ‘I want to push him.’ ”

And that’s not unusual. In adaptive physical education classes, there are often waitlists filled with able-bodied people willing to push athletes in wheelchairs. And the family hopes there’s enough momentum to someday create a dual-team division for runners with disabilities to be able to race.

“The whole community benefits from inclusion,” Jess said. “Everybody loves seeing them out there. It reignites that human spirit that all of us have. We want to see good in the world. We want to be a part of that in our communities.”

If Jeffrey ever decides he doesn’t love racing anymore, Susan would give up the sport too, she said. “I do it because I’ve seen all the struggles that my brother goes through daily,” Susan said. “So I want him to be included in what he can. ... That’s something that we both have to do together.”