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Disability Profiles

Inseparable

When his wife needed a kidney, blind Paralympian Jason Dunkerley didn't think twice.

How do you play soccer if you can’t see the ball?

Jason Dunkerley and his brothers, who are all blind, had to get inventive.

As boys growing up in Northern Ireland, they would adapt games so that they could participate. Jason remembers, for example, tying a plastic bag around their soccer ball so that they could hear where it would fall.

It’s this flexible persistence that saw Jason succeed in a range of sports, with the encouragement of his parents who–uniquely among parents of vision-impaired children–encouraged him to take part in physically active sports.Once the family moved to Canada in 1991, he was enrolled in a school for the blind that prioritized sports achievement.

Jason Dunkerley and his guide runner representing Canada at the Paralympic Games.

It was here that he first caught the bug for running. There, Jason’s favorite teacher acted as a guide runner. Guide runners assist visually impaired runners, sometimes with a tether, and are recognized as a partner in any running Paralympic success. By the time of his final year in high school, he made an 18-second improvement to his 1500 m time, from 4:52 to 4:34.

Since then, Jason’s passion for running has driven him to become a successful athlete, representing Canada at the Paralympic Games. Having most recently competed in Rio de Janeiro, he’s a five-time medalist in middle distance track, having won both the silver and the bronze.  

But the most strenuous challenge of Jason’s life hasn’t been sports. It’s donating a kidney to his wife, Colleen, who is also visually impaired.

Colleen lost her sight as an adult and Jason says she faced her new reality with a courage and strength that were some of the qualities that first attracted him. They were introduced as students, by mutual friends and began a slow burning relationship that led to their engagement at the Paralympics in Athens. Jason calls Colleen his “#1 fan” and says she has always been totally immersed in his sport even though she is not a runner herself. They combine their love for travel with Jason’s competitions and have travelled all over the world together. It was on one of these trips that life suddenly became complicated.

The chain of events that led to the couple’s life changing surgery began in 2008 when Jason was competing at the Beijing Paralympics. Colleen was traveling to join him, but became very ill during the flight. Upon landing, she was admitted to a hospital in China, where after a few days, she was diagnosed with renal failure. Despite her ill health she wasn’t about to miss his big moment.

Treated by doctors, Colleen was released in time to see Jason and his guide compete in the 1500 m final. But the pervasive nature of kidney disease meant that the couple knew it was just a matter of time before she would require a transplant. And in 2012, when Colleen began dialysis, the transplant became urgent.

I had always had the idea of offering my own kidney for donation in the back of my mind…

“I had always had the idea of offering my own kidney for donation in the back of my mind, but when Colleen’s kidney function deteriorated I looked seriously into being tested to see if I would be eligible,” says Jason. “Ultimately we were a match on two out of the three criteria, which was enough given today’s anti-rejection medication. It really was a no-brainer from there.”

Although Jason was resolute in his decision, there were risks they needed to confront:

“The medical team prepares you for every possible scenario. You know the odds of success are heavily in your favor but surgery is surgery and anything can happen,” he says.

Despite the couple’s fears, the operation was a success: as Jason came out of anesthesia after the operation, his surgeon told him that the kidney started working right away.

 

Jason and Colleen on vacation in Barbados.

Yet recovery was ahead of them. Strenuous exercise was vetoed, but the pair walked together daily, during which Jason didn’t run. Instead, the couple fundraised for ‘Alive to Strive” a charity that works to raise awareness of kidney disease and educates the public about kidney health, by completing 5K races.

Today, Colleen has regained much of the energy she was lacking during the years of her kidney failure. However, she still loves to nap, curled up with their beloved cat, Gracie. Jason jokes that sleeping, is in fact, one of Colleen’s  favorite hobbies.

Jason says that his connection with Colleen has been strengthened through their donation experience. 

It’s actually quite rare for spouses to donate kidneys to one another, says The National Kidney Foundation. In fact, only 13% of kidney recipients are married to their donor, making it in many ways the ultimate romantic gesture. In addition to literally giving your life to your love, there’s something supportive about healing together, and jointly shouldering the burden of recovery. That’s a burden that Jason refers to in a surprisingly positive way: “It was a privilege to be able to take this journey together with Colleen” he says.

Despite the threat to her quality of life, Colleen was the more relaxed of the pair in the run up to the transplant, she gave strength to Jason, who shares that he was feeling very nervous about the surgery.

“Going through something like this inevitably brings you closer,” he says.

Going through something like this inevitably brings you closer…

Following the operation, the disciplined runner took just 6 weeks off to recover. Apart from some post training fatigue, he returned to full form and was back competing in the Rio games in 2016, running within less than a second of his 1500 m personal best.

Runners hate slowing down, of course. But they also know how to pace themselves. While many people would have considered  an  organ transplant as a setback in life, Jason feels that for he and his wife, it was a necessary pause.

“Together, we looked at it as taking a step back to take multiple steps forward and I think that is what has happened. We feel incredibly fortunate to be in good health four years later.”

Colleen and Jason enjoy full and rich lives, including successful careers in marketing and government, an active social circle as well as their commitment to health and fitness.

They still enjoy traveling, most recently vacationing in Barbados, and love to spend quality downtime together. A typical weekend sees the pair taking walks around their city neighborhood, grabbing a coffee and sharing Sunday dinner with family.

Even though Jason is officially retired from competitive running he can’t quite shake the habit. He admits that he still runs 6 days a week, sometimes twice a day.

Colleen knows how important running is to Jason and the role it has played through most of his life. She has always been his greatest champion, ensuring he is well fed and rested for competition and has attended most of his races. When her kidney function deteriorated and she needed him the most, he was prepared to potentially jeopardize his health and his ability to compete in a sport he excels at on the world stage.

The challenge they faced together unites them. As Jason states, “it is part of our history and something which will forever link us.”

 

Disability The Good Fight Vision & Hearing Loss

Why Inclusivity Is Important, From Obama’s Champion Of Change

Deafblind activist Haben Girma explains why every company should design with inclusivity in mind.

Disability rights advocate Haben Girma has given a TEDx Talk, met with President Obama as a White House Champion of Change, and presented on the importance of inclusive design at Apple’s Worldwide Developers Conference (WWDC) 2016, helping iPhone and iPad developers understand why they should design with the disabled in mind.

She’s also the daughter of refugees and the first Deafblind person to graduate from Harvard Law School.

But don’t get carried away and call her an “inspiration” or say that “she’s overcome obstacles.” Girma shies away from that kind of language. Instead, as she writes on her website, “the biggest barriers exist not in the person, but in the physical, social, and digital environment.”

Haben Girma outside the U.S. Capitol with her trusty friend, Maxine.

Armed with her law degree and a spirit of determination, she’s fought those barriers for herself and others. She put pressure on digital library Scridb  until it made its collection of documents accessible to people using screen-reading software. She urged TEDx Talks to caption their videos for the Deaf and hard of hearing community. (They captioned her talk but many more videos remain inaccessible to those who cannot hear.) She’s also called out Uber drivers for failing to accept her service dog in violation of the Americans with Disabilities Act.  

In addition, Girma urges app developers to ensure that their technology is inclusive to people with disabilities. In her WWDC presentation, she compares it to constructing a building with an elevator from the start instead of adding one later.

In between trips around the world to present on disability rights and inclusion, Girma has tried surfing, rock-climbing and loves to salsa dance.

Folks talked with Girma via Skype chat (she uses a Braille keyboard or listens to VoiceOver at the high frequency she can hear) about why inclusive technology matters and how she’s spreading that message. The following excerpts have been edited for clarity and flow.

What misconceptions about being Deafblind do you encounter and how do you challenge them?

People assume my disability will prevent me from doing things like rock climbing or law school. I go ahead and do it anyways. Disability is not a barrier to overcome. Negative stereotypes and low expectations are the biggest barriers.

Do those negative stereotypes/low expectations ever make you feel lonely or isolated?

Over the years I have developed a strong community of friends who share my values.

Haben Girma and President Barack Obama during the Americans with Disabilities Act 25th Anniversary reception. (Official White House Photo by Pete Souza)

Why do you think inclusive technology is important, not just for people with disabilities but everyone?

We build better products when we plan for access from the start. Everyone gets a higher quality product. The business gains access to a bigger market. There are about 57 million Americans with disabilities, and 1.3 billion people with disabilities worldwide. Businesses also avoid the costs of litigation from ADA violations. A lot of people build products and think, “We’re just a startup. We’ll figure out accessibility later.” Trying to make something accessible after it has already been built is more expensive and time-consuming.

What do developers need to keep in mind, since the needs of people with different disabilities can be diverse?

Apple’s guidelines for iOS include access for Deaf individuals (captions), access for folks with mobility disabilities, and other disabilities. Apple has accessibility guidelines for developers. Android has guidelines, too. For websites there is the Web Content Accessibility Guidelines.

So, the information is there but the gap is in implementation and knowledge?

Exactly.

Haben Girma enjoys her first surfing lesson in San Diego.

What do you have planned for 2017? More work on inclusive technology?

Yes, this year I have many presentations on disability rights/inclusion. Most in the US. Some abroad, too.

What is your favorite country that you’ve visited so far?

Several years ago I visited Spain and loved it. Great food, great people, and great salsa.

Haben Girma plays with her German Shepherd, Maxine, at the Berkley Marina.

How did you get into salsa dancing?  

A blind dance instructor gave me my first salsa lesson. I have been dancing ever since.

Is there anything else you’d like readers to know about your work or inclusivity in general?

Disability adds value to our lives. We all benefit when people with diverse experiences have a voice at the table. Let’s all work to ensure that our communities are inclusive to everyone.

 

Disability Profiles Vision & Hearing Loss

Blind Rhythm And The Battle Rapper

After malpractice took his vision away, Kennedy Ayikwao regained his confidence rapping in the streets of Ghana.

Like any young, aspiring rapper, Kennedy Ayikwao oozes confidence. He’s not shy to point out he inspires himself; he brags that he will win a national music award for his work within a year.

His raps are about his favorite subject: himself. He raps about his life, his struggles, his ambitions, and his love for his art. Surrounded by friends and fans at his university campus in the West African nation of Ghana, Ayikwao–whose stage name is Kenzey– is most in his element spitting rhymes, rap-battling with a friend to a beat made by a crowd slapping their chests and feet.

Ayikwao puts all the money that comes his way into recording and promoting his music. He jokes that he is living off rice so he can pay to get his latest single out there to the masses.

So in most ways, Ayikwao is the quintessential rapper. The only difference is, Ayikwao can’t see what’s going on around him. After losing his sight as a child due to a medical accident, the University of Ghana student, now 22, uses rap to talk about his experiences as a sight-challenged person living in Africa, and to speak out for the vulnerable in his society.

Born in the capital Accra, where he now studies, Ayikwao started losing his sight when he was four. It was a gradual, and unfortunate loss, he says. At four, Ayikwao’s family first noticed he had issues with his sight when his father handed him a toy airplane. He was unable to locate it. 

Ayikwao’s family took him to the hospital, where it was discovered there was something wrong with his right eye. He was prescribed a corrective lens, but the prescription was switched, so that the lens meant for his right eye was instead prescribed for the left eye. “Gradually, it affected the sight in my left eye,” Ayikwao says. “It didn’t solve the problem, but rather brought on another problem. That was when [sight] became difficult for me.”

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Ayikwau and his posse of fellow students at the University of Ghana.

As his vision became poorer, Ayikwao fell behind in school, unable to read from the chalk board. He was left back multiple times before he eventually learned to read braille. As hard as days were, though, nights were even more difficult for young Ayikwao. “That was when I felt like the whole world was against me,” remembers Ayikwao. “I couldn’t see in the night. I thought I was the only person with this problem in the whole wide world. I said to myself: why am I odd? Why am I like this?” He felt like his “existence was going to be worthless.”

Depression followed. Ayikwao went through a phase of not wanting to leave the house; he stayed in his room all day, crying. But soon, the shy child realized he needed to pull himself together. He couldn’t spend the rest of his life in a bedroom that was fading away with his sight. When his father bought him a bike, Ayikwao decided to learn to ride it, taking advantage of the sight he still had, while he still could.

“The bicycle kept my mind busy,” he remembers. “I kept roaming as a means through which to get to know places. I used to roam a lot. I was a roaming ambassador!”

When Ayikwao finally lost his sight completely around 2007, he was moved to a boarding school for the blind in the eastern region of Ghana. Eventually, he graduated, and moved on to the University of Ghana in Accra, where he still studies. But life is a challenge; Ayikwao is quick to note the realities of being blind in Ghana.

“I have to make use of those around me,” he says. “I can’t be fully independent.” For example, the cedi–Ghana’s national currency–has not been designed with visually impaired users in mind. “It’s not like the dollar, where there are marks on it to make it possible for visually impaired to identify the amount they have.” You have to show it to someone to check for you to see how much the bill is for.

Luckily, Ayikwao has a right-hand man to rely on, both on campus and on the stage: his manager and fellow student, Alex Kwaku Frimpong. Not only does Frimpong help Ayikwao get by on a day-to-day basis… he helps Ayikwao pursue his life’s major passion, rap.

Kensey and his manager

Kenzey and his best friend and manager, Alex Kwaku Frimpong.

Before he started rapping, Ayikwao was always singing. As a child, he would pick up songs easily, singing boisterously in church and at family gatherings. In 2011, though, he started rapping. At first, he practiced by reciting the rhymes of Sarkodie, Ghana’s most famous rapper, but soon, his friends were encouraging him to come up with original tracks.

As his stage persona, Kenzey, Ayikwao combines English, a local dialect called Twi, and pidgin English to express himself through his music. This year he released a track that details his life history, called ‘I’m A Star’. He sings and raps through it, detailing the inspiration his late mother gave him, assuring him he would one day ‘be a star’.

“My music is about my whole life. It is self-inspired and spirited,” he says. His inspiration comes from the things that have happened to him, and the dreams he has; like a rapping Coleridge, Ayikwao says he sometimes dreams entire songs, then wakes up and puts them down to paper.

His music has been key to empowering him as a sight-challenged student living in Ghana, but Ayikwao wants to do more than inspire himself. He also wants to inspire others to achieve greatness in their lives. He hopes that by creating and performing his music, he will be able to advocate on the behalf of others who are visually impaired.

In Ghana, sometimes a person who has a disability is seen as a punishment from God. Luckily, Ayikwao says these beliefs are changing. “Culturally, [blind people] have not been treated fairly [in Ghana] but education is permeating very fast, so at least it is working, [teaching] people to recognize that me and my kind are not so different from them.”

The future feels bright for Ayikwao. He sees awards in his future. 

“With my music, right now I am very confident that if I get enough support I won’t be far from getting an award next year at the Ghana Music Awards.”

But Ayikwao is also serious about his studies. After completing his political science and philosophy degrees, he wants to study law, with the ultimate plan being a human rights lawyer, keeping his music career going alongside this profession.

Working in human rights will be a way to further advocate for Ghana’s vulnerable, he says. “People get their rights trampled on based on their disabilities,” says Ayikwao. His goal is to change that. He wants his work, both in the studio and the court, to be an “eye opener” in Ghana, changing the way those without disabilities see the blind… and even helping to change the way the blind in Ghana see themselves.

 

Disability Profiles

The Best Worst Gamer

Steve Saylor may be blind, but his YouTube videos appeal to anyone who has ever loved doing something they weren't very good at.

Steve Saylor may be blind, but his YouTube videos appeal to anyone who has ever loved doing something they weren’t very good at.

Steve Saylor is a soldier, plunging into the fiery hell of a cityscape without a parachute.

Steve Saylor is the host and star of Blind Gamer.

Shells burst and bullets trace fiery streaks all around him, but Saylor is calm…. right up until the moment that he hits the ground at terminal velocity, spattering across the pavement.

“Damn,” Saylor swears. Then he reloads.

Now he’s in an alley, an AK–47 bobbing in front of him, surrounded by a small cadre of commandos. The small group of soldiers creep up quietly, hoping to get the drop on a cell of terrorists huddled behind the next corner.

“Everyone, keep your eyes open,” barks Saylor’s commanding officer.

“I’m trying,” Steve says, grinning.

The stakes are low, of course. This isn’t real warfare; it’s a first-person video game called Call of Duty: Advanced Warfare.

But Saylor jokes because his eyes are open. It’s just that as the host of a YouTube channel called Blind Gamer, keeping them open doesn’t help as much as you’d think. Saylor’s 2,000+ subscribers love to watch him play anyway, though, and small wonder – his joyful enthusiasm for gaming strikes a chord with people who have ever loved doing something that they’re not particularly good at. Which is almost everyone.

When he was born in 1983 in St. Catharines, Ontario, about 10 minutes from Niagara Falls, no one would have expected Saylor to become a YouTube star, let alone a gamer. The oldest of three kids, Steve was born with albinism and a related eye condition called nystagmus, which manifests as an involuntary movement of the eyes which makes it hard for Steve to focus. “The best way I can describe it is like looking at a camera on your phone when everything is zoomed in to the maximum,” he says. “I don’t see any details further off.”

It was Saylor’s Mom, Linda, who brought video games into his life. After buying her husband an original Nintendo Entertainment System console as a Father’s Day present, Mrs. Saylor got bit by the gaming bug bad. She beat Super Mario Bros before any of her children managed to crack even the first few levels, before settling into an 8-bit version of Monopoly as her go-to game. Steve, though, was never very good at the NES. “I would play it and get as much enjoyment as I could,” he says, but mostly, he would just watch his brother, Tim, play video games like Super Mario Bros. 3 and Punch Out.

In addition to loving video games, Steve is an accomplished broadcaster.

In that way, Saylor’s early years as a gamer echoes today’s YouTube obsession with Let’s Play videos, in which gamers record themselves playing a game for the whole internet to watch and enjoy. People like watching these videos as a way to experience a game they might not be able to afford, have the right console for, or even be good enough to play through to the end. Most YouTube stars (like PewDiePie, a Swedish gamer who roughly earns $4 million a year uploading Let’s Play videos online) play through games at a very high level of expertise, but that’s not what makes them appealing to Saylor. “My enjoyment of these videos is when I see someone who’s not really super great at it, because at least then I can relate to a degree,” he says. “Seeing someone get frustrated because they can’t do it is like, ‘That’s what I do! That’s what I go through.’”

Eventually, Saylor realized that if he got so much enjoyment out of watching other YouTubers muddle their way through a game, they’d probably like to see him do the same. “I always thought that it would be funny for people to watch me play video games because I’m just very bad at it,” he says. Steve has special computer equipment that can help enlarge things on his computer for him, but his main adaptation is sitting very close to the screen, a fact that he plays up when producing his Blind Gamer videos to showcase his inability to see them very well. If you watch them, you’ll see the picture-in-picture cutout of Steve trying to make sense of the game from his limited field of vision.

I just adapt to what I have in front of me. It’s not a burden.

For his day job, Steve works for two Toronto radio stations (Boom 97.3 and 93.5 The Move), doing their graphic design, working on their websites, and producing podcasts and YouTube videos (naturally). He even works on advertising campaigns, something Saylor loves to joke about: it’s ironic, he says, that he has produced ads seen by millions of people in Toronto every day, even though he can’t actually see them himself.

The common thread in all these pursuits? A love of broadcasting, and putting himself out there. “I just adapt to what I have in front of me,” he says. “It’s not a burden. There are certain things I know I can’t do, but I always try to figure out a way that I can still enjoy the things other people can, just in my own way.”

Nowhere is this more evident, though, than in his Blind Gamer videos, which show Steve at his goofy, charismatic best. No wonder he’s building a cult following: last year, he grew his audience from just 130 subscribers to over 1,800. That’s not super-stardom, by any means, but it’s solid progress. Steve knows there’s no overnight successes in broadcasting: it’s all about the long haul of building your audience by being true to yourself.

“I always say that if you’re interested, you’ll be interesting,” he says. “If you’re really passionate about what you’re talking about, then people will see that passion and they will be attracted to it.”

Solid advice for anyone, YouTube star or not.