Will Johnson blazes a trail
Early September, a Tuesday, 6:40 a.m. Mist rises over the treeline along Messalonskee Stream as the sun begins to appear over the horizon. The campus is quiet until a door on the ground floor of Treworgy Hall bangs open and Will Johnson ’22 hustles outside and heads for the practice fields.
Varsity men’s soccer practice is about to begin.
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It’s early in the 2019 season and Colby, the reigning NESCAC champion, has just come off a 3-0 win over Thomas College. The team works on situational drills, three-on-two breaks, hoping to hone the offense for the upcoming game against Connecticut College.
Listening closely as Coach Ewan Seabrook delivers instruction to his forwards, Johnson is very cautiously optimistic. “We’ve worked hard enough,” he said, “but it’s all about how you show up on that day.”
Johnson has been showing up since before his first year at Colby began, joining first-year recruits for preseason, getting to know the veteran players on the team as well. He was a recruit of sorts himself, first meeting with Seabrook as a high school senior bound for Colby. The coach met the Johnson family on campus, learning about Will Johnson’s experience with the soccer team at Medfield (Mass.) High School. Seabrook was impressed by Johnson’s seriousness, his soccer knowledge, his questions about what technology Colby used for breaking down games.
And in case the coach was on the fence about taking Johnson on, his mother, Heidi (Lombard) Johnson ’89, made a promise. “Coach, I’m telling you now,” she said. “He will change your team.”
Which is exactly what Will Johnson did.
Changed the team. Changed the lives of his teammates, now his closest friends. Changed Colby as its first student in a power wheelchair. Changed the aspirations of others, including those who, like Johnson, have spinal muscular atrophy (SMA), a genetic disorder. Paved the way for the next student whose mobility won’t stand in the way of a Colby education.
“It’s got to be a kid who is okay with going with the cold,” Johnson said, flashing the wry sense of humor that can slip past people until they start paying attention.
He’s aware that he’s breaking new ground and agreed to do this story only for that reason. Even so, Johnson is an understated pioneer. “I’m happy if they think it couldn’t happen, but now I’m here,” he said. “There is a kid [at Colby] in a wheelchair.”
But that subject—Will Johnson opening doors for disabled students to follow—tends to peter out fast with Johnson himself. Asked about this reticence, his brother, Matt, gets it. “He doesn’t want to talk about this anymore,” he said. “He lives this. I get the benefit of it being just a story I get to tell. … He has to live it every day, and he doesn’t have a choice. That is his life.”
And certainly, Will Johnson doesn’t want to talk about his profound and even life-changing effect on other people—his friends, his teammates, his coach, his family. In the words of Matt Johnson, “he puts everything in a grander perspective, and problems seem much smaller and easier to deal with. He’s taught me a lot about that. Forgiveness, patience, and bigger perspective.”
So what does Will Johnson like to talk about? Sports, the Celtics, the Patriots after Tom Brady, the Alex Cora cheating scandal, the future of the MLB vs. the NBA. (The NBA has superior marketing and is attracting new and younger fans, he says.)
Or Johnson will talk Power Soccer, a competitive league for athletes in wheelchairs, where two of his teammates made the U.S. national team and will play in the World Cup next year. Johnson, a tenacious defender, said, “I could have tried out, but I didn’t want to complicate college more.”
And yes, for Johnson Colby is complicated. But he does his best to make it seem no more of a challenge than it is for anyone else.
Bearded, blonde, with arresting pale blue eyes often showing from under a hoodie, Johnson has spent almost two years navigating Mayflower Hill in his power wheelchair, studying computer science and math, pulling all-nighters, going to soccer practice, forging close friendships and video-gaming rivalries.
“I like to give him a little stick,” said Matty Morin ’22, a soccer player and Johnson’s close friend and roommate this year and next. “Mario Kart, he’s just really good. I’m a little better at FIFA.”
In short, Will Johnson has been going about the business of being a Colby student, which is no small accomplishment. Said his dad, Tripp Johnson ’89, “When you’re dealing with disability, you don’t add snow and salt and all that to your challenges. … The Colby thing was always, at some level, a dream.”
How much of a dream? Consider SMA and the life Will Johnson led before coming to Mayflower Hill.
He’s the youngest of three children raised in Medfield, Mass., a leafy town southwest of Boston. His parents remember his first hours, when he was so distraught that nurses brought him to his mother’s hospital room because his crying was disturbing the nursery. “He was just a miserable little infant,” Heidi Johnson said. “And it got worse from there.”
The baby was so inconsolable that he had to be sedated, and when he was weaned off the meds at four months he began to have tremors. And yet, his disposition slowly improved, and he grew into a cheerful chatty toddler, his parents said, “a happy little thing.” But then they noticed that he seemed to be missing his physical milestones. He was 17 months old when doctors confirmed that though he was verbally advanced and active, Will Johnson had SMA.
The prognosis? “They said many make it to their teens,” Tripp Johnson said.
A genetic disease, SMA prevents muscles from receiving signals from nerves in the spinal cord. The muscles atrophy, with those closer to the center of the body affected most. In Johnson’s case, that weakening of his core eventually caused scoliosis, which required that he wear a body brace, then, in middle school, to have his spine fused. He went from propelling himself with a standing wheelchair to a sitting power wheelchair. “This isn’t the life we expected,” Heidi Johnson said, “but it’s the life we were given.”
And for Will Johnson, that life went on.
He attended public school in Medfield, where his engaging good cheer made him a local personality. When he was in kindergarten, the television show Extreme Makeover: Home Edition built the family a new house, complete with a fully accessible backyard replica of Fenway Park—and a follow-up visit from then-Red Sox ace Curt Schilling. The family recalls that Johnson’s kindergarten teacher advised his parents that their son might be enjoying his celebrity too much. “Little five-year-old,” Will Johnson recalled with a grin, “drunk with power.”
As his parents threw themselves into fundraising for SMA research, their son followed the path set by his older siblings, Abby and Matt. Both high-achieving students, the elder Johnsons were also talented athletes—Abby in basketball and Matt in soccer. Their younger brother was also focused on academics and, while unable to play school sports, was a rabid Boston sports fan—Celtics, Patriots, Red Sox—and took on the job of managing sports teams in high school.
In the meantime, Abby Johnson ’18, four years older, had enrolled at her parents’ alma mater. Interested in architecture and engineering, she heard from a basketball teammate that the Physical Plant Department had an opening for a student to work with project managers there. She got the job and went on to work at PPD for three years, including a summer. And during that time, an idea started to percolate in the Johnson family: What would it take to get Will to Colby, like his siblings?
A lot, it turned out. But nothing, Abby Johnson decided, that was insurmountable. “I started walking the campus with more purpose,” she said, “looking at a sidewalk and thinking, is that something that William could use safely? … Is that something a wheelchair could do?”
With her brother considering applying to Colby, Johnson’s study became more than an academic exercise. At the direction of her bosses, Abby Johnson began to do a thorough analysis of the campus and its accessibility. She walked all of the footpaths and ranked them in terms of their condition and which should receive priority.
It wasn’t just for her brother. The campus is used for summer conferences that are sometimes attended by someone who uses a wheelchair. Others attend sports or cultural events. Relatives want to visit a student; alumni return for reunion. Her senior fall, when she was finished with other tasks, like drawings for building projects, Abby Johnson walked the pathways, noted the doorways to buildings.
The result was a color-coded map of the campus. Red for paths that should be repaired. Yellow for pathways that should be watched. Blue meant a walkway that was in bad shape but wouldn’t be needed because it led to stairs or some other obstacle to a person in a wheelchair or on crutches. “I definitely have had more exposure to what William can and can’t use safely, growing up with him and seeing when he flips his chair and when he doesn’t,” she said.
A mathematics and physics double major, Abby Johnson went on to receive a master’s degree in structural engineering from Stanford University and is now a structural engineer with the international structural and civil engineering firm Magnusson Klemencic Associates in Seattle. She says her analysis showed that, yes, accessibility should have been more of a consideration when the campus was being designed, that some aspects were flat out done poorly, including door opener buttons placed so that they were inaccessible to someone in a wheelchair. But on the plus side, “it would take effort, but not massive amounts of effort, to just make things so much more accessible for people.”
And one of those people would be her brother.
Will Johnson had been along for the ride when his parents visited first his sister, then his brother, Matt Johnson ’20, who graduated this spring. Will also stayed in dorms with his siblings, and with that experience, Mayflower Hill seemed like a real possibility.
It became a reality when he was accepted, kicking off discussions with President David Greene, Assistant Vice President for Facilities and Campus Planning Mina Amundsen, and Associate Director of Access and Disability Services Kate McLaughlin, among others. A first-floor suite in Treworgy was renovated to make it fully accessible. Arrangements were also made to provide a rotation of personal care attendants (PCA) who were drawn from the student community. “We went through an interview process and picked the ones that we felt great about, and they proved us right,” Heidi Johnson said.
Helping fill out the PCA rotation was Matt Johnson, who was 13 when he started helping out with his brother while his mother recovered from shoulder surgery. He said he was excited about the possibility of Will coming to Colby, but admits being conflicted because he’d had two years away from the responsibility.
“I think a large part of my anxiety that I didn’t necessarily articulate particularly well to myself was the idea that he wouldn’t necessarily find a place here,” Matt Johnson said. “I was certainly worried about that. And I think that made me try to rationalize why he shouldn’t come here—this school is not that accessible, and people will look at him funny because he’s the only one in a wheelchair.”
He said he was only partly right about Mayflower Hill’s accessibility, and entirely wrong about his brother not being accepted. “He’s found an incredible community here,” he said, “and I could not be happier for him and could not be happier that it all worked out the way it did.”
That community began forming before orientation, when Will Johnson joined other first-years at soccer preseason camp, and their first impression was that this team manager was on task. “I remember that Will was already in the flow of things,” said Dexter Kalderon ’22, a first-year walk-on. “He’s the team manager, and he has responsibilities. We only knew the business side, not the personal Will.”
But it wasn’t long before the personal Will emerged.
As Johnson “tagged” game action on an iPad from his wheelchair on the sidelines, noting key moments, he was also aware of the players who were watching the game beside him—and weren’t on the pitch. “I rode the bench for a very long time,” Kalderon said. “After I did start to get minutes, he was super happy for me, super pumped. I think I played like two minutes at the end of the Tufts game [in the NESCAC playoffs] and he was so hyped.”
Said Morin, “The fitness test or whatever it was, it was always, ‘You got this.’” And afterward? “High-fives. He’s like, ‘I’m proud of you.’”
That supportive attitude was contagious, and it was a crucial part of a special team chemistry that built as the season progressed—and would lead to one of the most remarkable playoff runs in NESCAC history.
Jeff Rosenberg ’19, a senior captain, said he noticed early on how Johnson had helped bond the big group of first-year players. But it wasn’t all high-fives. Rosenberg recalled Johnson weighing in at team meetings, telling the group, “You guys aren’t working hard enough, and I’m disappointed in you.”
Johnson led by example, as someone for whom every day was hard work, from start to finish. “We can look at the example of this kid who has defied the odds,” Rosenberg said. “And his attitude that he brings every day is infectious. It gave us the gasoline to keep on it. That was absolutely a big part of our season.”
He recalled a hard-fought overtime loss to Tufts in the first conference match-up of the season, when Coach Ewan Seabrook stood up to give the team a post-game pep talk. “He said, ‘We have something that these other teams don’t have.’ We thought he was going to say toughness or something but he said, ‘We have Will power.’ And he pointed at Will. That wasn’t the last time. We used the term ‘Will power’ over and over again.”
The team incorporated their manager into its pre-game warm-ups, bouncing passes off of his power wheelchair at the center of the field as Johnson surveyed the drills—not the first time “Will power” had motivated a team.
Matt Johnson, a goalkeeper on the 2018 team, had experienced it in high school, and Seabrook said he couldn’t help but smile when he thought of the two brothers reuniting on the Colby soccer pitch. But college athletics is about more than feel-good moments, and what Will Johnson helped bring to the team was a culture built on resilience and determination to overcome adversity.
There was adversity. The Mules were 3-5-2 in NESCAC, barely making the playoffs as eighth seed. They went on to march through the playoffs, winning two games in overtime on penalty kicks. In those games, Matt Johnson was sent in to goal for the PKs, defeating number-one seed Tufts, and making another clutch game-ending save against Williams to win the NESCAC championship—and send Colby to the NCAA tournament for the second time in nearly 60 years.
Seabrook said he’d heard from Assistant Coach Tim Stanton that Matt Johnson had drilled for hours on penalty kicks prior to high school playoffs. After Johnson came through in the clutch at the NESCAC championships, Seabrook said he asked Will Johnson why he’d never mentioned his brother’s specialty. “He said something to the effect of, ‘Coach, I’m not going to do your job for you.’”
Will Johnson’s task in the historic season was to prepare game video that is essential to giving timely feedback to players. His contribution to team culture was a bonus. “That was special,” Seabrook said. “It wouldn’t have been the same without Will. No question.”
Johnson serves as a role model, for sure. Seabrook said his Will Johnson-life lesson is “no complaining, no whining.” Morin, Kalderon, and Nick Lemire ’22—Johnson’s buddies and floormates in Treworgy—all point to Johnson’s optimism, perseverance, and courage, and their own privilege. The opportunity to know Johnson “changes your whole perspective,” Kalderon said.
They’ve come to know Johnson as an athlete in his own right, as a player on a Boston-based Power Soccer team, the PRHC Chariots, in the United States Power Soccer Association premier conference. When the team played at Colby last year against teams from the University of New Hampshire and Montreal, his Colby teammates turned out and were impressed with Johnson’s ability as a defender and his skill at spin-kicks, whipping his chair to propel the ball. “He’s good,” Morin said proudly. “Very good.”
The room at Treworgy is a hub and hangout for a group of friends, a place to take study breaks with Mario Kart and FIFA. It’s Johnson who sometimes reads the group’s term papers, his friends said—and often sends drafts back for more work. “We studied calculus together a lot,” said Lemire. “Honestly, he probably pulled me through that course a little bit.”
In the Mathematics and Statistics Department, Associate Professor George Welch said Johnson is organized and punctual, driving his chair into a spot in the front of the classroom. Welch, who has taught at Colby for 30 years, said he makes a PDA version of tests and quizzes and sends them to Johnson, who opens them in his iPad, writes his answers on the screen, and shares them back.
“He’s a good math student,” Welch said. “He’s right in there with everybody else.”
In fact, Johnson is so “in there with everybody else,” that Welch wondered why anyone was asking about Johnson at all. “From my point of view, the real story is that there’s not that much of a story,” he said. “He makes sure that he is able to do and does what he needs to do. I do understand that involves a fair amount of doing.”
That it does.
While other students may roll out of bed 10 minutes before class, for Johnson that’s a process, as it is when the day ends and it’s time to turn in. He’s dependent on a rotation of PCAs that this past year turned out to be his brother Matt and other students, including several soccer buddies, including Morin, Kalderon, and others. They underwent training for the paid position—not that they think of it that way.
“I didn’t know it was paid until I’d already committed,” Kalderon said. “I thought it was just something one person did for a week for free, and then it was somebody else’s turn.”
Morin said he felt funny being paid to help a friend and thought he’d just use the money to pay for takeout for the group once a week. Both friends said the experience—knowing Johnson needs help putting his iPad and laptop in his backpack, or to put on a jacket—has taught them that they take the convenience in their own lives for granted. “He’s way tougher than the rest of us,” Kalderon said. “I’ll see him in a T-shirt and I have a coat on and I’m like, ‘Dude, you sure don’t need a jacket?’ He’s like, ‘Nah. You’re weak.’”
The converse is true, of course, that Johnson is strong in ways that his peers likely will never experience. They talk about having their eyes opened to the privilege they enjoy as able-bodied people. “My whole experience [at Colby] would be entirely different if not for him,” Kalderon said. “Much of my time is spent with him—at parties, at games, hanging out in classes. You see things in a different light. It changes your whole perspective. You go out and you’re like, ‘Wow, that place is completely inaccessible.’”
But as the conversation continues, Johnson’s friends tend to arrive at the same conclusion. “At the end of the day, he’s just another student here,” Lemire said, “another one of our friends, part of our soccer family. The better you get to know him, the less and less you even see the wheelchair aspect of things.”
And it’s that “wheelchair aspect of things” that Johnson himself has the least desire to talk about.
We met in the Spa, and he was usually early. The last time was at the end of January, and Johnson apologized for being tired. He’d been up all night trying to make last-minute fixes to the Python code for a video game he and other students had designed for a Computer Science Jan Plan. They weren’t done. “It’ll probably work,” he said, “but I don’t know. We have a list of things to do.”
Also on his list last year were linear algebra, anthropology, and macroeconomics, juggling academics and his social life. “I’ll admit, sometimes I think I go a bit too much on the fun side. Other times, I’ve gone too much on the academic side, staying up all night doing work. But I’m trying,” he said. Flashing a smile, he added, “I promise by senior year, I will find the balance.”
Staying up all night can be an issue for Johnson, for whom getting physically run down could lead to an illness that could cause complications. He’s two years into treatment with a medication called Spinraza that is pumped into his spine through a port on his back. He said he didn’t have high expectations and has been very pleasantly surprised by the change.
“It’s been going really well,” he said. “Little differences here and there, feeling not as fatigued. Ability to do more. I feel like I have more control of my hands, I can reach farther. I can open Ziploc bags now.”
After leaving Colby in March, Johnson had another infusion of Spinraza, and reported from home that he was continuing to see progress “bit by bit.” It was a bright spot in the midst of a lot of uncertainty, especially being quarantined in a state that has been an epicenter for COVID-19. For Johnson, the end of the pandemic would be a very good thing.
In a perfect world, his life would return to normal next semester. Johnson would report with the rest of the soccer team for pre-season in August. The plan as of this writing is for Morin, Kalderon, and Lemire to live with Johnson in Treworgy, with Lemire and a couple of other teammates joining the ranks of the PCAs. In April, Johnson was already considering internships for Jan Plan, including one many states away from Mayflower Hill.
Doing that will be complicated, but no more than coming to Colby in the first place. And he has that down, at least as much as anyone else.
That morning in the Spa, the one after the video-game design glitch all-nighter, Johnson apologized but said he had to go so he could tend to that project. “If it works, I’ll come back and talk to you,” he said. “Probably have a whole new outlook on life.”
Not that there was anything wrong with the old outlook. If this story is any indication, there’s nothing wrong with his outlook at all.
Johnson brings disability to the forefront at Colby
Will Johnson is not alone.
Johnson is one of some 350 students at Colby with a disability, ranging from learning issues to chronic illnesses. But Johnson is the most visible disabled student on campus with a disability and as such, says Associate Director of Access and Disability Services Kate McLaughlin, drives the conversation by his presence.
“People now have a face and a name and a person associated with disability,” McLaughlin said. “That has brought considerations around ability and access to the forefront in a way that I don’t think would have been had he not been here.”
But the process is an ongoing one, she says, one that requires a community to see past the temptation to think that once buildings are accessible, the job is done.
Beyond physical access, beyond individual accommodation, is a paradigm shift where communities recognize that inclusion isn’t about benevolence on the part of the able-bodied majority, that inclusion isn’t something “given” to someone with a disability.
“That’s echoing myths,” McLaughlin said. “That’s not echoing a stance of ‘We want people with disabilities. And we recognize that as they come, and as we encourage them, they will have impact just like any other minority group, and they will impact our campus in multiple ways for the better.”
At Colby, more than 300 students have documented disabilities that require accommodations, she said. Her office works with faculty through the College’s Center for Teaching and Learning and staff.
Students also have organized to advocate for greater awareness of disabilities and disabled students’ right to access to education.
“I think people want to have those conversations,” McLaughlin said. “How do we as a community think about this? Where are we moving forward?”
And moving forward should benefit students with disabilities after they leave Mayflower Hill.
“I want them to leave knowing that their experience with their disability … is a source of unique knowledge that enables them to have a perspective in their careers,” McLaughlin said, “that adds to the field wherever they go. That is not something that everybody has. It’s a value-added.”
She emphasized that changing perspectives at Colby, or anywhere else, is a process, one in which students like Johnson can push the conversation but not bring it to a conclusion. She emphasized that changing perspectives at Colby, or anywhere else, is a process, one in which students like Johnson can push the conversation but requires the commitment and input of all community members.
Even given that resolve, there is no simple fix. “That,” McLaughlin said, “is not the world we live in.”