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Profiles

Not Interested In Normality

Latinx disco-pop sensation Cola Boyy, who has spina bifida, has one mission: to blow up people's ideas of what's possible.

“I did want to be normal… or what I thought that normal was supposed to be.”

Matthew Urango tried to find work around his hometown of Oxnard, California as a high school student, but was rejected from every place he applied. He says that most places were not open to people with disabilities, and he realized that the ordinary life he had expected and longed for was not necessarily an option easily available to him.

Urango was born with spina bifida, which is a condition in which the spine and spinal cord do not form correctly. The neural tube does not fully develop during the early part of the pregnancy, so the spinal cord protrudes out of the column. For Urango, this led to kyphosis and scoliosis, which are two different types of curvatures of the spine. He also had a severe clubbed foot, which led to him getting a prosthetic leg. When looking for a mainstream job, in the strawberry industry of Oxnard, for example, Urango was turned away when employers found out about his disabilities.

Urango, now known by his musical pseudonym, Cola Boyy, writes and performs disco-pop and punk music around the world. He organizes with a leftist collective to fight for justice in his immigrant community. While the mainstream working world would not hire him, Cola Boyy made his own path in the music and activist worlds.

From Pop To Punk

Cola Boyy began exploring the arts as a young teen, starting guitar classes at 14. He talks about his high school guitar teacher, Mr. Wingland, who tried to teach the students to play in a structured manner and learn how to read music. But eventually, Mr. Wingland relented, seeing just how talented Urango and his friends were when they explored music from a more freestyle and competitive perspective.

When Cola Boyy listened to music in those day—whether it be music on the radio or in Alpine, a local music venue–it always felt magical. He says that he didn’t think about the process of how music was made. At that age, it simply felt like the songs came into being. He liked pop, and decided that’s what he wanted to write and perform.

But it was punk that gave him his start.

He began attending punk concerts in his neighborhood once a week. Many of the concerts were in the backyards of his friends, and he loved the scene.  After a few years of watching, Cola Boyy noticed that one of the bands he listened to, called the Sea Lions, was missing a bass player and he asked to join. The Sea Lions took him on. They toured outside of Oxnard, even traveling to Japan and New York to perform. When Cola Boyy describes his eight years with the Sea Lions, he lights up. Adrian Pillado, the lead singer, taught Cola Boyy how to write songs and run and band.

Cola Boyy. Photo: David Luraschi

The Birth of Cola Boyy

But eventually, pop music consumed him. “I’ve always been drawn to pop,” he says. While the style of music is often dismissed as frivolous, Cola Boyy points out it takes just as much talent and dedication to pull of well as any other genre. “A good song is a good song.”

While a punk-turned-pop-artist may seem like a rejection of his previous lifestyle and friends, Cola Boyy says that his old friends are actually quite supportive of his music and enjoy listening to it. He says: “Who doesn’t love funky music? We’re from Southern Cali; funk is in our blood.” Ultimately, style is only one element, and Cola Boyy knows that his friends recognize his skills and effort. He says: “They’ve known me since I was 14. They’ve seen me through the years putting in work along with everyone else.”

In addition to concentrating on his music, Cola Boyy began working as an activist with the group “Todo Poder al Pueblo” and a leftist reading group in 2016. Those groups work to support immigrant rights and fight against police violence and gentrification. “[Music alone] isn’t going to change the system,” Cola Boyy says.

Why Representation Matters

At the end of the day, Cola Boyy believes that it’s important for people from disenfranchised groups to see themselves where they’d like to be, whether that’s on stage, in politics, or following any other dream.

“As long as I can remember, I felt that I wasn’t accepted,” Urango says. “I’m used to that. It’s kind of fun and funny to be the opposite [of what people expect], and to make people feel like, ‘who is this guy?’”

The ultimate success for Cola Boyy, though, would be to become so famous that people stop paying attention to the fact he’s disabled at all.  “Every day I walk out the door, I’m still looked down on for the way I look.” But by fully embracing what makes him unique, and writing some killer songs while he’s at it, Cola Boyy is showing the world it doesn’t have to be that way.

Health & Fitness

The Wheelchair Marathon Runner Who Won’t Take ‘No’ For An Answer

The Chicago Marathon requires a special wheelchair to qualify. But Stephen Norris, who has spina bifida, refused to sit by the sidelines.

When Stephen Norris received his medal at the Bank of America Chicago Marathon, he cried.

“I was overwhelmed with pride,” the 30-year-old Long Island native says. “I stood up for myself and others like me who are told that we aren’t enough, that our athletic accomplishments don’t count, that we can go far, but only so far.”

For Norris, participating in this marathon was thought to be impossible. Because Norris has Spina Bifida Myelomeningocele, a birth defect that stops the spinal cord from developing properly, he uses a wheelchair.

Even more impressive? He finished the Bank of America Chicago Marathon despite the fact that they prohibit wheelchair users from participating without a racing wheelchair, which he does not have.

A black man with spina bifida in a wheelchair racing in a marathon.

Stephen Norris racing in his day wheelchair at the Suffolk County Marathon.

Defying The Rules

He wasn’t going to let that stop him. In 2017, Norris set a goal to become an Abbott World Marathon Major Six Star finisherm meaning he would complete all six of the Abbott Marathon World Majors. Those marathons are held in Chicago, New York, Boston, Tokyo, Berlin, and London.

“I am an athlete with a disability, but I’m not allowed to participate because I’m the wrong kind of disabled?”

“I found it ironic that the Chicago Marathon is touted as “inclusive” when it shuts out an entire category of disabled athletes on the basis of the wheelchair they use,” Norris said. “I am not a wheelchair racer, so I don’t belong in the wheelchair category, and the Athletes with Disabilities category is only for those who are ambulatory. I am an athlete with a disability, but I’m not allowed to participate because I’m the wrong kind of disabled?”

So he “took a leap to challenge the authority” that created this “unjust and unfair” policy.

From Bedridden to Running Marathons

When he was 21, Norris suffered an injury that left him bedridden for eight months. At the time, he weighed 116 pounds, and that increased to 210 pounds.

“I became depressed and developed a poor relationship with food, and binged daily as a coping mechanism,” Norris says. In an effort to lose the almost 100 pounds he gained, he began wheelchair running in 2001. He participated in his first marathon length run on September 25, 2016 and finished it in 3:48:38.

In 2017, he ran in the Suffolk County Marathon, finishing at 3:04:37 and landing in 9th place in the running division and 1st place in the wheelchair division. He was the only runner in a wheelchair.

Norris showing off his Bank of America Chicago Marathon runner’s tag. 

Facing The Challenges of Marathon Running

Marathons come with many challenges, especially for runners in wheelchairs. Most have rules against people in so-called “day chairs” (or what most people would think of as ‘normal’ wheelchairs) competing, and four of the six World Major Marathons prohibit the use of day chairs and only allow racing wheelchairs. Racing wheelchairs can be expensive to purchase and maintain, as well as being difficult to transport and use, which makes them prohibitive to many wheelchair users, including Norris.

Additionally, he doesn’t have a desire to use a racing wheelchair.

“I do not aspire to be a wheelchair racer, and have no intentions of ever competing in the sport,” he said.

Knowing he’d never qualify for the Bank of America Chicago Marathon in a racing wheelchair, Norris entered the marathon using his previous time as a qualifier. When he signed up, no one stopped him.

Entering The Chicago Marathon

After running the Suffolk County Marathon, Norris realized his time would qualify for him to run the 2018 Chicago Marathon as a guaranteed entry, so he applied and was approved.

“I honestly cried, because I couldn’t believe I had gotten in. I was sure that it was going to be denied,” he said. “I was shocked and a little afraid of the months to come, because what would happen on race day? Surely they’d notice I was in a day chair and deny me entrance to my start corral.”

“I couldn’t believe I had gotten in. I was sure that it was going to be denied.”

But no one stopped him from entering, and Norris was able to complete the race with no interruptions. He finished with an official time of 3:22:41 and placed 1,465th out of an estimated 44,000 participants, which put him in the top 10 percent.

Finishing The Race

The most memorable moment for him, though, was crossing the finish line. He is the only person in the 40-year history of the Chicago Marathon to compete and finish in a daytime use wheelchair.

Stephen Norris racing in his day wheelchair at the Suffolk County Marathon.

“I truly didn’t believe I was going to be able to pull it off. I thought I was going to train for 18 weeks, spend untold thousands of dollars to be there, and then get denied at the entrance,” said Norris, who flew to Chicago, alone, to participate in this race. “The fact that nobody batted an eye surprised me. They knew I belonged, that I was an athlete worthy of being a part of a World Marathon Major.”

Norris’s friends and family tracked his time through the Chicago Marathon app, and he said the response he’s had has been “overwhelmingly positive,” but he has faced some pushback from people who think he should respect the race rules.

But Norris won’t back down.

“I’m righting a wrong. I am fighting for all people to be able to participate in all marathons,” he said. “I think day chair participants should be included in the disabilities division of marathons, or have a specific day chair category. Let all people of all abilities compete.”

Looking To The Future

After realizing his dream of competing in the Chicago Marathon, Norris plans  to compete in the New York City and Berlin marathons in 2019 to collect two more stars towards his Abbott World Marathon Major Six Star.

He even has dreams of being sponsored by Nike.

“I want to live in a world where all marathons are open to all people, of all abilities, not all abilities with an asterisk.”

“I believe that sponsoring an endurance athlete with Spina Bifida that runs marathons from their day chair would be a terrific opportunity for visibility and representation of an athlete that nobody really expects to see,” he says. “I think the largest sports apparel company in the world can provide that much needed visibility and perhaps change the landscape of marathons, worldwide.”

As of now, the only major marathon that has a day chair category is the London Marathon. The Chicago Marathon has added Spina Bifida as a condition that qualifies for the Athletes With Disabilities division, but the rules still state that only racing wheelchairs will be allowed.

That isn’t good enough for Norris.

“I want to live in a world where all marathons are open to all people, of all abilities, not all abilities with an asterisk,” he said.

Health & Fitness

Wheelz in the Air

To Aaron Fotheringham, founder of Wheelchair Motorcross, spina bifida isn't a curse. It's an opportunity to blow people's minds.

Aaron Fotheringham prefers to think of his wheelchair as something he rides on, not in.

At 26, the Las Vegas native is the world’s foremost athlete in the sport of WCMX, or wheelchair motocross. Like professional skateboarding or BMX, it involves using a wheelchair to do daredevil tricks and jumps, with points awarded for technique, difficulty, and flair. Fortheringham literally invented the sport; he initially called it “hardcore sitting.”

“I love being on the chair. I’m able to pretty much have a skateboard with me everywhere I go,” quips Fotheringham. Another personal preference: he goes by “Wheelz.”

To see Fotheringham, who was born with spina bifida, a defect of the spinal cord, launch himself airborne at high speeds is a true spectacle. More often than not, society couches the disabled as individuals in need of protection and supervision. In a ten second clip of Fotheringham soaring off a mega ramp, then landing, that stereotype is wholly ruined. It is powerful stuff.

It was exactly this sort of clip that kick-started Wheelz’s career.

How To Go Viral On YouTube

On July 13th, 2006, at an extreme sports summer camp, a young Fotheringham was recorded landing his first backflip. A counselor there had the good sense to upload it onto YouTube (“Aaron Fotheringham: FIRST backflip in wheelchair!!”), where it quickly went viral. Within months, Fotheringham had his first sponsor, a German tires manufacturer called Schwalbe. Then came invites to show off his skills around the globe. More sponsors offered their services, like Box, a custom wheelchair maker in Texas.

All the while, Fotheringham was pushing the envelope, working on harder and harder feats. Following the backflip was a frontflip, then a double backflip, a 360, grinds and other bodily contortions. This August he completed for the first time something called a “flare”, a backflip 180, at a massive ramp in Woodward, California, where he had landed his first backflip twelve years earlier.

Pain is a constant. Fotheringham has broken his front teeth out several times; he gets them super-glued back in. Because he’s anchored to his chair, he receives more head injuries than your average skateboarder, who can land on their knees; when he falls, his head is pitched groundward to the side; he has suffered more concussions than he can count. Between thirty and thirty-five chairs have broken beneath him (his new custom chairs are made of aerospace-grade aluminium alloy).

Yet despite it all, each drop in remains as scary as the first. “Your heart starts going crazy and you’re telling yourself, ‘Just chill.’ But looking down, this thing makes you sick to your stomach. You need to shut the brain off and be completely present.”

Learning To Wheelchair Skate

Fotheringham was eight the first time he attended a skate park.

He remembers his first drop in. His older brother Brian helped him get to the top of a quarter-pipe. He leaned over, letting gravity set in. He ate it. But he kept returning, motivated by dreams of one day riding alongside all those guys he watched on TV during the X-Games: legends like Travis Pastrana, Bob Burnquist and Danny Way. A

fter he mastered the quarter-pipe Fotheringham moved onto the half-pipe, then the next biggest ramp, and the next.

“I was pumped,” he recalls of those early days. “I was terrified, too, though. I remember just being constantly so terrified.”

Eventually a man at the park named Joe Wicker, “a super rad dude with long hair”, began informally coaching Fotheringham, who progressed quickly.

One nice aspect of growing up in Las Vegas was its high concentration of skate parks “within pushing distance” and after Fotheringham had exhausted all of the ramps at one park, he’d move to another. For the skate-obsessed adolescent, “each new park was like an episode in a video game.”

Aaron Fotheringham, in a rare shot obeying the laws of gravity.

“A Great Opportunity”

In his homelife Fotheringham’s disability hardly registered. He grew up with five siblings; he was adopted. His parents treated all of them the same. “They wouldn’t give me any special treatment,” he remembers.

His school wanted to, though. They tried to put him in an adaptive PE class but the young Fotheringham rebelled. “I didn’t want to be treated specially. It just felt like, ‘Why can’t I just be with all the other kids?’” He stayed in the regular class.

Yet, despite doing just that, Fotheringham did not get into wheelchair motocross with the intent of challenging stereotypes. But he is happy to change minds, to convince people to “see the chair differently” (he once smilingly described spina bifida as “a great opportunity”).

“Being able to help that stigma get pushed to the side is huge,” he says. “That’s kind of become my goal, to push the message that a wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

“A wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

In his case, actions speak louder than words.

At the Nitro Circus, an influential extreme sports touring show put on by Travis Pastrana, tens of thousands of people see Fotheringham do his thing every year. He has toured with the show since 2010, from Auckland to Denver. “It’s such a rush to see the whole crowd there and have everyone just cheering. It’s a cool feeling,” he says.

It was through the Circus that Fotheringham befriended Pastrana, his childhood idol. The skateboarder once said of him, “Aaron ‘Wheelz’ Fotheringham is really cool. He’s got the most dry sense of humor you could ever imagine. First time I saw him, he hit the ground. He’s laying there, [yelling], ‘I’ll never walk again!’”

Catching some air. Photo: Aaron Remkus

The First Try Is Always The Hardest

Fotheringham’s success, though a dizzying whirlwind, has been the unlikely realization of a childhood dream. In creating his own sport out of  (and through) thin air, in shattering all preconceptions of what a kid in a wheelchair could accomplish, Fotheringham has lived out his fantasy.

He’s still living it. He continues to tour with the Nitro Circus. He and others are trying to get WCMX into the Paralympics.

Alongside nurturing a successful speaking career, Fotheringham was recently married. He is also, of course, always among ramps working on new tricks.

“The first try is always the hardest,” he says. “After the first try you can figure out what you need to do. But it’s about building up that courage to actually go for it. The first time is the hard part.”

Profiles

Why The World Needs More Disabled Superheroes

Becoming a superhero is every kid's dream... but when it comes to disability, it's a dream not reflected in most comics. That's something a new wave of comic creators is looking to change.

In the comic book multiverse, anything’s possible. Characters with X-ray vision, superhuman strength or invisibility occupy each page and no one bats an eyelid. However, despite their extraordinary qualities, our heroes are flawed: they make mistakes, they have very human problems, which tempers their invincibility and makes them relatable.

Unless, of course, you’re disabled. While mainstream characters have chinks in their armor, disabled characters are usually either missing completely, or lazy stereotypes: grotesquely deformed villains, or damaged characters with an axe to grind. There are exceptions, of course–Daredevil is a famously blind superhero, albeit one whose superpowers compensate for his disability to such an extent that he might as well be sighted, and the X-Men’s Professor X is a paraplegic–but by and large, disability has largely been forgotten by comic makers.

But this could be changing. With more awareness of disability representation in the mainstream media, perhaps the superhero multiverse is due a shake up.

A Superhero With Down Syndrome

David Walker’s well known in the comic universe, having written Luke Cage and Nighthawk for Marvel Comics and Shaft for Dynamite Entertainment. As an established author and as a black man who knows what it feels like to be an outsider, he feels a responsibility to bring representation to his work.

David Welker has written comics for Marvel, Dynamite, and more.

“As a kid growing up, I did not see an adequate amount of representation that made me feel like I had a place in these large, make-believe worlds. And I still remember what that feels like. And so now that I’m in a position to create comics, I feel the least I can do is work to make other people included.”

When publisher Lion Forge approached Walker to write for Superb, a new comic about a meteor giving people all over Earth superpowers, Walker was initially on the fence. However, when he heard one of the lead characters, Jonah, had Down Syndrome, he was sold.

“I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right. I figured if someone was going to mess it up, I would rather it was me messing it up trying to do it properly than somebody to not give the character the love and attention they deserved.”

I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right.

Having volunteered with children with different developmental abilities, Walker felt well placed to tackle someone who is often misrepresented, misunderstood, or not represented at all.

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

Walker read up on Down Syndrome, and ran workshops with children and their families. Then he got down to work. He’s not afraid to admit that creating Jonah meant confronting his own prejudices and preconceptions of what Down Syndrome was.

The cover of the Superb trade paperback, showing Jonah, a superhero with Down Syndrome.

“To admit this is embarrassing and shameful, but there were times I was writing him and I would think, did I make him sound too smart? It’s a difficult thing to admit. I realized afterwards, wow, how prejudicial is that on my part? This assumption that just because a kid has Down Syndrome means he can’t use big words or say things that are really smart, or really funny. And I got mad at myself for thinking that way. That’s our societal condition. And I just had to acknowledge that and grow.”

One concern was giving Jonah the humanity he deserved, in an interesting and engaging story.

“Jonah spoke to me a lot even before I started writing him. I know that might sound odd, but as a writer, you want your character to talk to you and to express themselves in a way in your imagination that makes it easy to write.”

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

He also wanted to subvert the idea that disability is a hindrance.

“I wanted to make sure the message was, just because he has superpowers, his powers don’t negate his condition. We all have our strengths and weaknesses, and the Down Syndrome doesn’t have to be a weakness, just part of who he is.

“Jonah’s greatest strength is that everyone underestimates him because of his Down Syndrome, which makes his Down Syndrome his greatest strength.”

Most importantly, Walker’s looking to do what he does best: to entertain, with plenty of action scenes and gripping plots. After all, that’s what his readers like, no matter who they are. “If a kid’s in a wheelchair or if they have autism or Down Syndrome, they’re still a kid, not some other, separate thing.”

The X-Men Of Disability

Across the Atlantic, in Hampshire, UK, Dan White’s been writing and drawing comics for years, producing the children’s comic Cindy and Biscuit as well as the more dark Terminus and Insomnia cartoons.

But it wasn’t until his daughter Emily, born with spina bifida, was three and Dan began to search television, books, and comics in search of characters in wheelchairs, that he realised how little was out there.

So he sat down at his desk, in his living room, and created The Department of Ability, a universe of characters, each with a disability. There’s Billy, a cat with carbon wheels, a radar and a transmitter. Jacob Claypole, who is blind with super-heightened senses and a weaponized cane, and of course, Emily, in her flying wheelchair.

There was nothing like The Department of Ability out there, Dan says. And as he drew, he realized that his project had potential outside his own living room.

“I didn’t know if the world was ready for a mainstream, fun, accessible story about Superheroes that showcases disability as normal, every day and brilliant, which disability is,” he says.

While authors have good intentions, White says many fall back onto tired stereotypes.

“A lot of authors … become unintentionally patronizing or they don’t flesh out their characters, investigate the reality of what this brilliant, diverse, talented community actually want..”

The Department of Ability is a superhero team of characters with disabilities.

 

All this community actually wants is to be seen, read or written about just like everybody else.”

Children know when they’re being talked down to, he says. “Sometimes authors go overboard in the sympathy or educational stakes, when all this community actually wants is to be seen, read or written about just like everybody else.”

“Treat children with equality of mind and they will astound you, children of all abilities have more imagination, glory, and knowledge than those who eternally dictate to them what they think they want to read and see. Engage and challenge your reader and they will adore you for it.”

As for Emily, she’s 12 now and proud of her dad and the characters he’s created. “She continues to plug the idea and its values to whomever she meets, a rare thing for an almost-teenager and gaming, music obsessive,” White says.

White’s 230-page graphic novel—which he describes as “totally original, loud, groundbreaking and unlike anything ever printed—is doing the rounds among publishers, and is getting nibbles in the UK, the US and Asia.

The publishing industry has been slow to come round to Dan’s idea, which is surprising given the attention he’s had from around the world from social media and mainstream news outlets.

It’s been a long time in the making, and he’d like to see it in print. Seeing themselves represented in print is no less than children like Emily deserve, he says.

Why Diversity In Comics Is So Important

New Jersey writer Erin Hawley—a critic who writes about comics and games on her popular website, GeekyGimp.com—has always loved Superman titles, and Betty and Veronica comics. But growing up with muscular dystrophy, there was never any question of seeing herself reflected in the pages she devoured so eagerly.

“I grew up without a strong notion of disability as an identity, so not seeing myself represented never occurred to me until adulthood.”

Erin Walker, a comics critic with muscular dystrophy, says more needs to be done to make comics more inclusive.

Now, she realizes how important it is for people from different groups to see themselves represented in the mainstream. Seeing yourself on the page; and a fair, empowering image of yourself, is vital for self-esteem. “It lets you know that you matter, that disability is part of who you are—and that’s OK.”

As well as wanting to see more disability representation in comic books and graphic novels, Hawley would love to see better-written characters, as existing characters are an “amalgamation of stereotypes and cliches.”

“Or disability is a catalyst for a character’s actions; their disability gives them a reason to be evil, to somehow get back at society or whatever. It always positions disability as a negative. This is especially true for villains or anti-heroes like Professor X.”

Other characters have their disabilities downplayed. “When we do get an awesome disabled character like Oracle (ed. – Barbara Gordon, previously Batgirl, who was paralyzed from the waist down up until a few years ago), their disability is stripped away.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier”

“When all you see in media is negative stereotypes, it lets you know that folks don’t consider you at all. And that’s an especially damaging message to send to kids and teenagers.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier.”

As White says, the time for change is nigh.

“Children and young adults tell me they are fed up with their media image and they love that my work gives them something of their own at last, which is so fun and accessible it can read by absolutely anyone.

“Representation isn’t hard, trust me.”

Features

When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”

Q&As

He Shoots, He Scores

Born with spina bifida, sled hockey star Billy Bridges is more motivated than ever as he heads into his fifth Paralympics.

The sport he plays is known officially as “Para ice hockey,” as “sledge hockey” in his native Canada, and as “sled hockey” in the United States. But whatever you call it, there’s no missing the 80-mile-per-hour, one-handed slap shot of Billy Bridges.

Being born with spina bifida (a spinal cord disability that affects mobility) hasn’t held back the Canadian national team’s all-time leading scorer. Bridges, 33, led his homeland to the gold medal at the 2017 world championship in Gangneung, South Korea – also the site of the 2018 Winter Paralympics. There, the Toronto resident is eager to claim Canada’s first Paralympic hockey gold since the 2006 tournament in Turin, Italy. His chemistry with longtime teammates Brad Bowden and Greg Westlake makes that hope realistic, even against the two-time defending Paralympic champion Americans.

This colorful four-time world champion was just 14 when he made his national team debut. He’s also played international wheelchair basketball, which has taken him everywhere from Australia to Argentina, but his heart is with hockey. Though known for his rough-and-tumble style, Bridges has also studied English literature at the University of Toronto. In 2011, Bridges married Sami Jo Small, an able-bodied Canadian female goalie who won two Olympic gold medals before co-founding the Canadian Women’s Hockey League. They have a two-year-old daughter named Kensi.

With the clock ticking down to the Paralympics, we caught up with Bridges, whose articulate candor and wide-eyed appreciation for his sport are infectious.

Billy Bridges during workout.
Photo Credit: Steve Hiscock / Hockey Canada Images

How would you describe your daily training?

Usually, we’ve got two hours of ice in the morning. And then a quick little break, and then we go for a strength workout. And then we usually go from there to physio or anything to keep our bodies going, hot tubs, anything like that. I usually have my daughter for the whole afternoon or evening, and then we do cardio at night or some stretching.

My favorite workouts are real heavy strength stuff. I’ve always been lucky to put on muscle pretty easily. Circuits definitely kick the crap out of me, so I hate them. Or long-distance cardio.

What’s behind your big shot?

I spent countless hours in the basement and garage in my dad’s house, putting pucks through the wall. I think it had a lot to do with those sticks we used to make. They probably weighed two or three pounds and they were about a foot and a half long. I used crutches growing up and I always wanted to skateboard, so I was skateboarding on my crutches. Probably all those things developed my wrist strength. I think I just fell into the right technique.

As a kid, I was really intrigued by the NHL All-Star Game. Whenever we got empty ice, I’d get my buddy to pass me pucks and we’d hang up plates from the crossbar and try to hit them like Ray Bourque. I always wanted to have a big slap shot like Al Iafrate or Al MacInnis. Then as I started playing myself, I became a fan of powerful Canadian forwards like Rick Nash and Sidney Crosby. Those would be the guys I try to model my game around now.

Charlottetown, PE – December 4 2016 – Game 2 – Canada vs. Norway during the 2016 World Sledge Hockey Challenge at the MacLauchlan Arena in Charlottetown, PEI, Canada. (Photo: Matthew Murnaghan/Hockey Canada Images)

What kind of music fueled you as a kid?

I was in metal bands growing up. Especially looking back now, I think I had a pretty rough childhood. Obviously a lot of it was my own doing, not understanding where I fit in and not understanding the criticism I would get from people. I would take it all to heart. All of a sudden you’re mad at your mom and you’re mad at this and that. Metal was my way to release it.

Back in the day, I loved Deftones, Korn, and Slipknot. The old heavy stuff. I’d listen to a bit of Iron Maiden and Metallica, but pre-game was definitely a lot heavier stuff. But it would throw me off so much! I’d be jacked and pumped, and I’d go out there and bring my arms up and try to kill guys. It made me pretty intimidating. A lot of times, I’d go after people and they’d just leave the puck. That’s how I got a lot of my steals and my points growing up. It wasn’t until a few years ago I realized I needed to harness something different than angst.

It wasn’t until a few years ago I realized I needed to harness something different than angst.

Can you share some memories about beating Norway 3-0 in the 2006 Paralympic gold medal game in Turin, Italy?

Before the gold medal game, Brad Bowden and I both thought we were leaving at 3:15 pm. It turned out it was actually 2:45! Brad was on the phone with his grandma, shooting the breeze. I was playing video games because the Olympic Village always has the coolest video games area ever. We were just mucking around. Then our staff comes up: “Guys! We’ve been looking for you for 20 minutes! The bus is leaving!” We were like, “Oh no!” We ran and got in. It was funny just how loose and carefree we were. We looked around and some of the veterans were a little panicked. But we clearly carried that looseness right into the game.

The play really shows, when I watch that game, the level we were at. On the second goal, I was going to dump it in and it went off a player right to Brad. He dangled past three guys and got it back to Greg Westlake. It was pretty cool. Also, the number of shot-blocks we had in that game was pretty incredible. Fortunately, Norway had a lot of predictable shooters. We were able to get in front of them. We had a lot of injuries, bruises and broken ribs in that tournament, but it was so worth it in the end.

Mentoring the next generation of sledge hockey players. Photo Credit: James Emery / Hockey Canada Images

What has having a daughter meant to you?

It’s given me such a perspective on life that I never thought I’d have. It blew my mind. I was raised by women, so I always wanted children growing up. Me and my friends, who were always girls, we’d always name our kids and think about what sports we’d want our kids to do. It was funny because Sami had all guy friends, and when it came time to choose names, that was the first time she’d even ever thought of it! So we had a lot of debates about that.

It’s incredible how much you can love something in an instant and how every single day Kensi lights up my life so much. It’s so much fun to come home to her after training or even a tough loss. You come home and she’s screaming “Daddy!” and running at you. It’s such a life-changer.

What’s the biggest life lesson that you pass on to other young people with spina bifida?

A lot of times, I’m trying to pass on lessons to the parents of those kids. Especially now being a parent, you understand where a lot of them are coming from. I’ve seen so many people with the same abilities I have really deteriorate to the point where it’s bad. When you get too much help from your family and your parents, they can set you back years. I was pretty lucky that my mom was so strict and made me do chores, and that my friends encouraged me to go skateboarding and play sports despite my disability.

Charlottetown, PE – December 10 2016 – Canada vs. USA in the Gold Medal game during the 2016 World Sledge Hockey Challenge at the MacLauchlan Arena in Charlottetown, PEI, Canada. (Photo: Matthew Murnaghan/Hockey Canada Images)

I encourage people with spina bifida to find their niche, find their sport. Understand that with our disability, you can play any sport you’d ever want to play. Find which one you love the most and stick to it. There are so many times when we’re praised as disabled kids for just doing normal things instead of being continually pushed. That’s what I try to encourage parents to do.

There are so many times when we’re praised as disabled kids for just doing normal things instead of being continually pushed.

What are your goals for the future?

My goal is more of a day-to-day goal than it used to be. Obviously I want to win a Paralympic gold medal. But I’ve refocused in the last year to really have a daily or weekly goal in my training and live that disciplined lifestyle that our staff and more experienced veterans back in the day used to talk about. I never felt like I needed it. Now that I’ve done it, I’ve seen where it’s taken my game. My goal now is to continue doing that and see how far it can take me. I’d love the opportunity to play on this team for another four years while keeping as strict as I can, to see how good I can get.

Now I’m trying to step up to guys on our team who are extremely fast and trying to beat them in races. I never used to have that competitiveness when I was younger. If we were racing for a puck, I’d always let the guy get it and try to find a way to hit him off it. I never had that “I need to be there first” racing mentality. But I find with my discipline that’s coming, it’s more of a natural thing. I feel like every shift I’m thinking about putting in hard work, just like with my training. I want to see how far I can take this.

Health & Fitness

Chair Skills

In wheelchair tennis, how well you handle your racket is only half the game.

In wheelchair tennis, how well you handle your racket is only half the game.

Wendy Pasinski eyes the incoming ball and wheels furiously across the court. It bounces once, then twice as she swivels into position. She swings her racket, connecting with a powerful forehand that sends the ball straight into the net. “Ugh,” she groans, with a self-deprecating laugh.

Pasinski, 43, isn’t happy with how she’s playing this morning. But in wheelchair tennis, like any sport, there are good days and bad.

Some 30 athletes have gathered in Encino, CA on this hot, cloudless Saturday in April for the 4th annual West Coast Wheelchair Classic, a local tournament sanctioned by the United States Tennis Association. Matches sprawl out over four courts as players from across southern California compete for trophies and ranking. Between games, they talk strategy, and cheer on their fellow contenders. Grunts and whoops of joy or disappointment punctuate the air, along with the soft thwack of balls hitting rackets, and the continuous whir and scrape of wheels pivoting on pavement.

Pasinski is the only female entrant in the tournament this weekend, so she is playing against male opponents in the men’s B division. It’s not unusual at the local level, she says, but not ideal since the games won’t count toward her ranking. Formerly 6th in the U.S. in the women’s wheelchair A division, she has been working to boost her numbers after a back injury knocked her out of the circuit for much of last year.

She relishes the chance to move again, to return to an activity that buoyed her spirits. “It’s good for us emotionally to be out here, especially when we’ve been physically impaired after an accident,” Pasinski says.

Pasinski faces her male opponent, Michael Garafola, who also plays on her wheelchair basketball team.

Pasinski is tan with a blonde ponytail pouring out the back of her white baseball cap. She’s a bright spot on the court in her electric blue top and pink sneakers. You can hear her bubbly laugh halfway across the tennis center. Her first match of the day is against Michael Garafola, 41, a teammate of hers from wheelchair basketball. Pasinski is quick in her chair. She pushes hard to reach the ball, racket in hand, and scrambles to make a shot. “That’s what I’m talking about!” she exclaims after sending back a solid return.

“Years ago, people who had a disability wouldn’t leave the house, wouldn’t get out of bed,” says the mother of two, readjusting her Velcro chair straps between sets. “But now, adaptive sports opens up another world that people might not have known about if they they’ve been in a wheelchair since birth, or that they were missing if they were injured.”

Pasinski lands in the second category. Once an ambitious college athlete, she played basketball, ran track and also dabbled in golf growing up. But on a skiing trip at age 20, she took a jump in slippery conditions and lost control of her skis. She somersaulted through the air, falling hard on the ice and sending two of her vertebrae into her spinal cord. She was paralyzed from the waist down instantly.

It’s good for us emotionally to be out here, especially when we’ve been physically impaired after an accident.

For 15 years after her injury, Pasinski avoided sports. “Part of it was a mental block. I played basketball able-bodied; I didn’t want to play sitting in a wheelchair,” she recalls.

After her son was born, she met a woman whose son played wheelchair basketball and she reconsidered. A week later, she went to UCLA, borrowed a basketball chair and played her first game. Then a friend introduced her to tennis. She loved it. “The sport offered me freedom that I hadn’t felt for so long,” she says.

Garafola, who has been playing wheelchair basketball since 2002 and competitive tennis for just over a year, says getting into sports reawakened his athletic drive after a car accident left him unable to walk at age 15. “Adaptive sports, for me, was like a rebirth,” he says. “My competitive fire was gone for 12 years, and this brought that passion back. The accident changed my life, and then sports changed my life again.” He now runs an adaptive sports program for kids at UCLA.

Wheelchair tennis was established in 1976 by Brad Parks. It is now overseen by the International Tennis Federation, and has been a Paralympic sport since 1992. The rules are nearly the same as in traditional tennis, with one major exception. The ball is allowed to bounce twice before each return, compared to only once in traditional tennis. The first must be in-bounds, while the second may be anywhere on the court and the ball can be played. Otherwise, the scoring, courts and rackets are the same.

One key difference, however, determines how successful a player will be on the court: chair skills.

In wheelchair tennis, your racket doesn’t matter as much as your other equipment.

“Chair skills are the most important thing in any wheelchair sport,” Garafola says. “You have to learn how to hit, of course. But if you can’t move your chair, it’s pointless. I don’t care if you have the best serve or the best forehand – if you can’t control and maneuver your chair, you’ll struggle.”

Garafola recently gave a newbie this advice: “Put your racket down. Go out on the tennis court, get into your chair and just go crazy in it. See what the limits of the chair are, get warmed up. Then go pick up your racket.”

Wheelchairs encompass a surprising range of apparatuses suited to different purposes. Everyday chairs are the ones people use to get around in daily life, with two large rear wheels angled straight up and down and two smaller casters in front. Then there are sports chairs: vehicles designed for tennis, basketball, racing, rugby, and soccer. Sports chairs have canted wheels angled outward at the bottom for greater stability and tighter turning.

Sports chairs cost anywhere from $1,500 to $5,000 and are custom fitted to their users. “You kind of become one with the chair,” says Jerry Russell, 47, who founded the West Coast Wheelchair Classic.

Adaptive sports, for me, was like a rebirth.

The players bond with one another, too. “It’s a great social outlet,” Russell says. “When we get off the court, we’ll go out for a beer. We all travel to the same tournaments together and take care of each other.”

Veterans of the sport often find themselves coaching younger players. Anthony Lara, 41, a two-time Paralympian who played at the Sydney games and was an alternate in Beijing, holds clinics up and down California and will soon offer more programs with his nascent nonprofit, the 1 More Push Foundation. Born with spina bifida, a birth defect in which the spinal cord doesn’t develop properly, Lara has been playing tennis for three decades. “A lot of [the kids I coach] would never have dreamed they’d have the type of lifestyle they have, playing tournaments or traveling the world,” he says. “They feel fortunate.”

Part of the value of wheelchair athletics is finding role models and learning you’re not alone, adds Jerry Newman, 51, a former high-rise window washer whose platform tumbled from the building he was working on. “You’re exposed to other people in your situation that have been injured – but these are people who are moving on with their lives,” he says. “They’re not wallowing in their medicine, or ‘why me.’ It gives you a can-do attitude – there’s nothing we can’t do, and everyone shows you that.”

Pasinski and Zack Wentz play some doubles. “Put it where they ain’t!”

Later in the afternoon, Pasinski is back on the court for a doubles match. She and partner Zack Wentz, a 23-year-old USC student, are returning every shot and the score is rising in their favor. “Great shot, Zack – put it where they ain’t!” Newman calls from outside the court, where Pasinski’s husband, son and daughter also watch. After a grueling match, they clinch a sound victory and advance in the bracket. “That was like night and day compared to this morning’s match,” Pasinski says, grinning.

Pasinski attributes a lot to her seven years playing tennis. “Playing sports has made me feel stronger,” she says. “It has helped my confidence to have my body completely break in half, and to recover from that.”

And the game has taught her not to hold onto frustrations. “You have to play the point, and then forget about it,” she explains. “Really, life is like that for me. A day might go by where I don’t physically feel up to it, or I’m having a pity-party and I’m like, ‘This is too hard.’ But there’s only a certain amount of time for that, and then I’ve got to forget about it – because I’ve got to live life.”

All photographs by Sketch Pasinski.