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Profiles

A Circus That Shows All Bodies Are Extraordinary

In London, a circus troupe made up of the disabled and able-bodied alike explores diversity in all its forms. Meet Extraordinary Bodies.

It’s Monday morning and the circus troupe is well into in the first workshop of the week. A young woman in a harness turns slow midair somersaults in the high-ceilinged brick studio. A drummer in a wheelchair idly spins a stick between his fingers between bursts of frenetic drumming, while a translator explains something in sign language to a group of performers. A large red hoop hangs in the center of the room, and occasionally a performer lowers themselves onto it as casually as they would an armchair and is hoisted towards the ceiling.

This is Extraordinary Bodies, a London-based circus company that delights audiences while challenging conceptions about what disabled people are capable of. The troupe is made up of a revolving group of able-bodied and disabled performers, musicians and artists, and aims to represent the diverseness of society. Some performers are veterans: one has sung with the National Opera, while some are just starting their career. Today they’re practicing in a studio a stone’s throw from the venerable Old Vic Theatre.

For the last few weeks, the troupe’s been workshopping around the UK, working with communities to share circus and music skills while exploring the theme of worth for their next show: What am I worth?

Performer Sarah Hoboult says the theme is a timely one. “It’s something that needs to be talked about at the moment. We have divisions about what people are worth that are scary and sad. Finding the value in ourselves is one of the hardest things to find in your lifetime.”

“Finding the value in ourselves is one of the hardest things to find in your lifetime.”

Sarah is an Australian Paralympian-swimmer-turned-circus performer who has traveled from Sydney to workshop with the group, helping performers develop their acts and make the show accessible so everyone can engage with its themes.

The thirty-four-year-old was born with Hallermann-Streiff syndrome, which affects bone structure. She’s also legally blind. Standing at around four foot seven, the performer says her unique look attracts attention, which she embraces onstage.

“The world isn’t used to seeing people like me. People remember me in a performance because of how I look. I enjoy that, and I can’t shy away from that.”

Sarah Hoboult, who was born blind and with Hallerman-Streiff syndrome, practicing some of her acrobatics with a partner.

Sarah says lack of sight gives her an advantage in her specialty, which is aerials and acrobatics.

“Circus is very tactile, you’re always holding an object: a trapeze bar, a hula hoop or another person’s body. A poor-sighted person has an advantage as we can read things quicker. The goal is to move with your feeling. I know how to feel, so I can create a more visceral experience for the audience.”

Circus is very tactile, you’re always holding an object: a trapeze bar, a hula hoop or another person’s body. A poor-sighted person has an advantage as we can read [these] things quicker

The intuitive performer says rather than use her distinctive look to confront, she prefers to walk alongside her audience, guiding them on a journey. “I know that I’m noticeable onstage and that people are challenged by that. When I first get on stage people say, ‘huh? Who is this person?’ So I will start with a sitting position, or I’m still for a minute, and it gives people a moment to take me in.”

Offstage, her appearance means people can have low expectations of her, or think she’s fragile, or sick. “I’m nothing like that, I’m very strong. One review of a performance I did started out saying, ‘who is this frail, diminutive person?’ But as it went on it was, ‘oh my gosh, she is really strong and skilled.’”

Sarah describes herself as “natural born freak,” and a “carnie”. These terms that recall latter-day freak shows might seem pejorative. However, Sarah’s keen to reclaim them. “It’s important to own your past. The philosophy of the freak show is to use what you’ve got, which is integral to circus.”

Sarah says the world is crying out for diversity, and that audiences are ready to embrace differences. “There’s a deep sense of urgency to tell our stories, we want to get ourselves out there. Art has the power to shift the world.”

“One review of a performance I did started out saying, ‘who is this frail, diminutive person?’ But as it went on it was, ‘oh my gosh, she is really strong and skilled.’”

Overhead, the woman in the harness stops her slow somersaulting and reaches for a dangling microphone. “Eye color”, she speaks into it. “Height. Languages spoken.” There is a flurry of signing and performers arrange and rearrange themselves into order, exploring their perceived worth: the value society places on them according to these attributes.

Drummer Jonathan Leitch is new to the circus world. Assessing his own worth has been “complicated”, and something he’s been mulling over since he started working with the troupe. “I started with a question mark … but working [with Extraordinary Bodies] has opened my eyes. I have ended up thinking my worth is happiness: of others, of myself. That’s what everyone’s worth, how happy you are and everyone else is.”

Extraordinary Bodies practices.

Jonathan grew up drumming on every available surface, and after a lengthy session where he drummed along to the Queen song We Will Rock You all over the house, his mum cracked and offered him lessons. Since graduating university, the twenty-three-year-old works as a sound engineer, composer and drummer for theatre productions. He got into theatre almost by chance after a suggestion from one of his lecturers, and fell in love with the heady, often chaotic world of live performance.

Drummers are usually on the edge of the action but working with circus performers often places Jonathan right in the centre. “In one session, we had to get one person from A to B without touching the ground, I just planted myself right in the middle of that, so I had to make sure this person was off the ground while I was frantically playing the drums.”

“Working [with Extraordinary Bodies] has opened my eyes. I have ended up thinking my worth is happiness.”

Jonathan’s been paralyzed since birth, when an ischemic event interrupted blood circulation to his spine. During day-to-day life, Jonathan says he “just gets on with it”.

“I’m very independent, my upper body is very strong and I just get on with everything.”

Like Sarah, he finds that whether he’s willing or not, he is often faced with challenging people’s perceptions. “I am always just trying to, maybe without even realizing it, change people’s depictions of me. I just realized this recently but I look more serious when I’m walking down the street people don’t ask me if I’m okay.”

Questions are fine, but don’t expect a polite reply if your opening remark is about his disability, Jonathan says. “Curiosity is normal. Sometimes I’ll stare at someone with the same disability symptoms as me. But I don’t like the first comment to be, oh, you’re disabled. I’m not weird, I’m just like everybody else.”

Jonathan believes perceptions about disabled people and their capabilities are changing. “The views are still there of disability being a negative thing, but from being at school and seeing kids now, the adults will look at me but the kids don’t react. Maybe it’s more inclusive or you see more [disabled people] on TV so people know it’s just a part of life.”

His experience working with circus performers has been eye-opening, especially its potential for physicality. “All these art forms coming together in such an open platform is amazing. You can do what you want: fly around, or do this do that. It is so inspiring to work and create alongside that.”

Working with the circus has left him thinking about exploring more movement within his drumming. “Throwing sticks in the air, playing with drumsticks on fire, or stick tricks, I’m always open to making things bigger and better.”

Jonathan says drumming is a way to come out of his shell. “I can be shy person in real life, but onstage behind a drum kit, I can be expressive and as loud as I want. It’s such an awesome feeling. Having the ability to make something is a great feeling.”

In the centre of the studio the performers continue to discuss their worth. “Number of sexual partners,” someone says. “Skin color,” signs another, hands flying emphatically. Someone cracks a joke, and laughter rings loudly around the studio. The drums start up and the performers drift into smaller groups to practice circus tricks. Celebrating the bodies they were born with, the circus troupe spins, twists and tumbles its way into a performance that’s

Profiles

Sailing Blind Around The Mediterranean

After a series of disasters saw her lose her home and her sight, Sue Fockner set sail for a new life on the Turkish Mediterranean.

In the Turkish Mediterranean town of Fethiye, Sue Fockner is readying her 22-meter yacht, the Arkadaslik, for the summer season. It’s Sue’s fourth summer hosting tourists on board the eight-berth luxury gulet–a traditional Turkish wooden yacht–and she still can’t quite believe she’s here.

“I’m the least likely person to be doing this, ever. If someone had said five years ago, this is gonna be your life, I wouldn’t have believed them,” she says with a cheerful laugh.

Wind back those five years and you can see what she means. In 2012, Sue was a senior project manager for a large Canadian health care organization, living on a farm in rural Alberta. It was an isolated, but happy existence revolving around work, her dogs and horses.

“If someone had said five years ago, this is gonna be your life, I wouldn’t have believed them.”

Turkey wasn’t even on her radar until a trip she took with her friend Janice to Greece. The pair decided that since they were there, they might as well catch the ferry over from Rhodes and do some exploring, and enjoy a week-long gulet cruise.

Within minutes of landing in Turkey, Sue experienced an extraordinary feeling, as though she had come home, something she says is “very not me.”

“I’m a very grounded, science-based kind of person, so it was a very weird feeling. The whole trip was magic, we met wonderful people and had incredible experiences.”

Flying home, Sue and her friend discussed returning to Turkey, perhaps buying a gulet to holiday on each year. But, back on home soil, the dream was replaced by the reality of daily life.

It took a series of disasters for the idea to return.

Sue Fockner back in Canada before her eye surgeries.

On Christmas Day, 2012, after dinner with a friend, Sue returned late at night to find her house ablaze. Horrified, she called the fire department, who managed to stop the spread of flames and save her animals, but couldn’t save her home.

When the firefighters left in the early hours of the morning Sue stood in the middle of the pitch black field, staring at the remains of her home in shock. With nowhere else to go, she headed to her office and started to make calls.

“I called my mum and dad, I called friends and started to farm everything out–my horses and dogs. I phoned my insurance company and my insurance guy told me to find a hotel and hunker down, because I’d be there for a while.”

A Best Western became her home for the next nine months, a base from which she planned to rebuild her life. But unfortunately for Sue, life wasn’t quite finished with her, and three weeks later, she woke up to find she was blind in one eye.

As a longtime owner of “bad eyes”, and flimsy retinas inherited from her father, Sue’s doctor had warned her she was susceptible to detached retinas. “As I woke up and saw what was happening, I knew what it was. I got in my car and drove to my eye doctor’s. By the time I got to the office I really couldn’t see very well.”

Fockner on her eye surgeries: “Are you squeamish? It’s quite disgusting.”

Her optometrist immediately bundled her into a taxi to her ophthalmologist’s clinic, and forty minutes later, she had her first surgery. There were to be six further operations, on the same eye and on her other retina, which detached a few months later.

“Are you squeamish?” Sue asks. “It’s quite disgusting. They suck the liquid out of your eye, and laser beam your retina back in place, then they fill your eye up with gas, which escapes as your eye fills with fluid again.”

However, Sue soon realized that surgery was the easy bit. After each operation, she had to lie face down, completely immobile, for two to three weeks, to prevent retinal damage during the healing process.

“And I did that in a Best Western in Strathmore, Alberta,” she points out. “I couldn’t move, I couldn’t watch TV, I developed bed sores everywhere, even on my forehead and my chin. All the fluid went into my face and my face ballooned out: I looked like a bulldog.”

Sue’s friends and the hotel staff rallied round, supplying company and meals. Not that she was particularly hungry. Unsurprisingly, Sue says it was “a bit of a blue period in my life. I had some degree of depression.”

Although the surgeries restored some of her vision, her eyesight was still extremely poor. What’s more, she was now at a high risk of further retinal detachment. Deemed unfit for work, Sue was put on permanent disability.

Sue decided as long as she was making changes, she might as well go the whole way.

However, the self-described optimist decided to look on the bright side. Face down on the hotel bed, Sue decided it was time to design a new life. Resuming her old life would be impossible, she knew. No longer able to drive, she’d have to abandon her rural home and community, as well as her job.

Sue decided as long as she was making changes, she might as well go the whole way.

“It was such a brutal year, I just needed it to end. I wanted to try something new, so I thought I might as well make it a good new. I wanted to do something productive, something challenging. I didn’t want to be on disability–and I really hate winter.”

The Arkadaslik at sea. The name means friendship in Turkish.

Farewelling family and friends in Canada, the woman who had always described herself as “not really a sea person” headed to Turkey to buy a boat.

In Fethiye, on Turkey’s south coast, Sue reconnected with people she’d met on that first trip and began asking questions. Navigating the choppy waters of a foreign country wasn’t easy, and Sue admits there were stumbling blocks. “A woman in Turkey alone, especially one that’s perceived as having a lot of money, there’s risk there. I had to be cautious. I made mistakes, but nothing that was devastating to my plans.”

First, she found a boat: the twenty-two-metre Arkadaslik, which is Turkish for “friendship”. Then she hired a crew–including a captain, Oktay, who, after a shipboard romance, became her partner–and began marketing her gulet cruises to tourists.

Despite only being able see a little–namely, large objects right in front of her–Sue lives a largely independent life, navigating life onboard the boat.

“I can get around the boat because it’s like my house. Once you know where the light switches are you’re comfortable. There’s almost always someone on here with me, partly for my safety and partly because I’m not a sailor so if something went wrong on the boat I wouldn’t know how to fix it.”

“I’m an optimist. I could’ve wallowed, but that’s not who I am. I found a new life.”

In unfamiliar situations, it’s a different story. “Today I had to go to an unfamiliar shop, and I couldn’t go by myself to find the shop on my own so I had to take somebody with me. It’s not a bad thing, but I don’t have the independence that I used to have.”

Fockner today, with her partner Oktay.

Fearing future retinal detachment, Sue sticks to her doctor’s advice: no high impact exercises like running. Even yoga’s off the cards. Instead, she walks each day to stay healthy. One day, her eyesight will probably get worse, she says: the surgeries she’s had have caused the onset of cataracts. Cataract surgery comes with a high risk of further retinal detachment, a harsh catch-22 Sue’s not ready to think about just yet. For now, she prefers to enjoy herself.

“Yes, I lost everything, but like I said: I’m an optimist. I could’ve wallowed, but that’s not who I am. I found a new life. Every day is great. I’m happy, I’m productive, I’m still able to add value to the world. I don’t know if I’d do it all again, but I don’t regret the choices I’ve made.”

Profiles

Meet The Sisters Of Invention, Australia’s Pro-Disability Pop Stars

We dare you to say these five ladies don't rock.

Tinker Bell snaps her wand and Pocahontas tears off her necklace in defiance. “This isn’t Disneyland, I’m not a novelty, this is as real as it gets,” chant the Sisters of Invention, a South Australia-based five-person girl band in their 2014 music video. For this upbeat, electro-pop song, the Sisters dress as Snow White, Cinderella and other Disney princesses, but their words urge listeners to look beyond the surface and take them seriously.

The Sisters all have some form of disability and write their own songs drawing from life experiences: rage, anxiety, grief, feeling different. “This Isn’t Disneyland” is a rebuttal of sorts to people who infantilize them. “We’re all grown up, we’re not babies,” Aimee Crathern tells Folks during a Skype interview. “If we’re treated like babies, it’s not our problem, it’s their problem. They don’t know how to treat people. They don’t know how to see us as normal people.”

Each member has first-hand experience with this frustration towards people who want to put them in corners because of their conditions. Annika Hooper, 29, is blind. Michelle Hall, 28, and Caroline Hardy, 31, have cerebral palsy. Jackie Saunders, 27, has Fetal Alcohol Spectrum Disorder. Crathern, 30, has a developmental disorder called Williams Syndrome.

The Sisters met through a choir at Tutti Performing Arts, an Adelaide-based organization that fosters the professional development of artists with disabilities. Producer Michael Ross, 35, (who is not disabled) saw the girls’ potential and helped them form a band. Together, the Sisters wrote and released their  their debut self-titled album in 2015, and are currently working on a second album. Meanwhile, “Pop-Ability,” a 5-part documentary series featuring the Sisters, began airing on Australian TV in March.

If they don’t know how to see us as normal people, it’s not our problem, it’s their problem.

The Sisters are pros all the way: they have a recording contract and get paid for every live performance. Still, Ross says certain attitudes around disability stubbornly persist. He’s observed those who incorrectly assume that “people with disabilities will be children forever and if they’re doing creative work, it must be for purely therapeutic benefits.”

Hooper says this attitude actually fuels her determination to write, perform and prove skeptics wrong. “Just watch me!” agrees Hall.

Having worked with the Sisters for six years now, Ross has also noticed some people coddling and sheltering those with disabilities, including the Sisters but also people with disabilities in general. “It could be the wheelchair user on the singing show being told they’re the most inspiring contestant they’ve ever seen,” he says. “Or the 30-year-old learning disabled artist being told they’re not allowed to use swear words in their art by a parent.”

The Sisters of Invention on set for their latest music video.

While women struggle with the glass ceiling, “in this disabled world it’s almost like a cotton wool ceiling,” Ross says. “It’s a low ceiling congratulating people for getting out of bed, congratulating them for not actually achieving anything and giving them very low expectations. If a non-disabled person were given the same treatment their growth would be stunted.”

Ross hopes that the Sisters help challenge these behaviors. “[Some people] never think of them as working artists, as professionals in the field,” he says. “That’s what the sisters actually do. We write original music and release it commercially. Part of the message is that they’re just being working artists.” Ross concedes that some of the attention the Sisters get is due to their backstory but insists their music has merit on its own. “Inevitably there is some bias because the band members are all women living with disability,” he says. “But the group has true, rare talent and that’s reason enough to be media worthy.”

It’s a low ceiling congratulating people for getting out of bed, congratulating them for not actually achieving anything…

Each song’s creation is a bit different, but the original spark of inspiration comes from real life.

“If someone’s come in and having a bad day, we might sit and talk and write about it and then Michael will get on the piano and start playing random chords,” says Hall.

Like real sisters, they’ve helped each other through heartbreak. When Saunders’ 14-year-old cousin committed suicide, the band wrote a haunting, piano-tinged ballad called “Tsunami of Kites” inspired by the loss.

Ross believes the Sister’s unabashed emotional honesty is part of their songs’ appeal. “It means more because we’ve written it ourselves,” Hall says. “Lots of people going through [different challenges]. It’s nice to know that when people come up to us and say, ‘I felt that in that situation.’” Adds Hooper, “they can relate.”

Performing live and on stage.

In fact, during one performance for around 400 teenagers, the crowd went so bananas hysterically screaming and cheering that Ross said he had to check on the Sisters and make sure they weren’t overwhelmed. It wasn’t their first gig, but “the band had never had that volume and duration of an applause before,” he says. Meanwhile, they reveled in the fans’ enthusiastic response. “When I checked in with the Sisters after the show they said it was exciting and they could get used to it,” Ross remembers.

At their album launch Space Theatre at the Adelaide Festival Centre in May 2015, the Sisters had about 200 people crowding the merchandise table, and even their support worker was surprised by the response. “They stuck in there, did it, and afterwards needed to chill out,” Ross says.

Between skeptics, the loss of Saunders’ cousin and other setbacks, it hasn’t been all smooth sailing for the Sisters, but Hall says most people dwell too much on what those with disabilities can’t do rather than seeing all of the other things they can. “If you focus on the can, it’s much better than focusing on the can’t,” she concludes.

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.”

 

The Good Fight

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.

 

Profiles

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.

 

Q&As

The Sight-Challenged Survivor Of 9/11

If he hadn't been raised to do everything a sighted person could do, Michael Hingson may never have escaped the 76th floor of Tower One.
Michael Hingson's memoir, Thunder Dog.

Michael Hingson’s memoir, Thunder Dog.

Blind since birth, Michael Hingson’s parents raised him the same way as his sighted brother, encouraging him to explore his neighborhood and even ride a bicycle. The best-selling author of Thunder DogMichael and his guide dog Roselle made international headlines after escaping from the 78th floor of Tower One in the World Trade Center during the September 11th attack. In the days after 9/11’s anniversary, Folks sat down with Michael to ask about what it’s like to try to have a normal childhood when everyone’s telling you that’s impossible… and how a love for his guide dog helped him keep calm in the face of the greatest terrorist attack the country has ever seen.

Your parents were determined that your upbringing should be “normal” as possible. How did they foster that?

My parents made a decision. When the doctors told them I should be put in a home and sent away because no blind child would ever grow up to contribute to society, they said the medical profession was wrong and they didn’t know what they were talking about.

If you’re blind, you’re not normal. If you’re blind, you’re not capable. Those are false, false, false.

Medical science reflected not only the attitude at the time, but the attitude that a lot of people with eyesight have about blindness, and that’s if you’re blind you can’t do anything; if you’re blind, you’re not normal. If you’re blind you’re not capable. Those are false, false, false. That’s what my parents believed and I grew up believing that I could do what I wanted, and because they gave me that attitude.

As a kid, you explored your neighborhood, learned to ride a bike. How did you learn to do those things?

In the same way every other kid did. We went around the neighborhood, we rode our bikes. I listened where they might use their eyesight, but instead of seeing where a car was parked on the side of the road I could hear it. I could hear cars coming so I could move to the side of the road to avoid them. I just used different techniques to accomplish the same tasks, but I learned the same way all the neighborhood kids learned.

Mike and his guide dog, Roselle.

Mike and his guide dog, Roselle.

Do you find that children are more accepting towards blindness than adults?

I think they can be more accepting than adults, but I believe children learn about blindness from a very early age, and sometimes they learn that blindness is ‘bad’.

I had a 13-year-old child come up to me a couple of years ago in IKEA while I was looking at some furniture and say “I’m sorry.” And I said “why are you sorry?” and he said, “I’m sorry because you can’t see.” That’s an amazing thing to say, especially to someone you don’t even know: that the immediate presumption is, I’m sorry for you. So I said, “I’m sorry that you can see, because you’re missing a whole other part of the world because you can see and you don’t look beyond your eyesight.”

It may or may not have been the most pleasant way to deal with the situation but the fact is people who have eyesight have never tried out blindness so they have no clue what it is, and what you can do if you’re blind.

The fact is people who have eyesight have never tried out blindness so they have no clue… what you can do if you’re blind.

You’ve had seven guide dogs since you were fourteen. What has changed since your first dog?

We’ve become a more urban society, so dogs have been trained to do more: going on subways and trains and escalators and moving walkways more than they used to do. Dogs are very adaptable, they catch onto that sort of stuff very quickly.

Trainers are always looking for better ways to train dogs too. Guide dog schools now use a clicker to train the dog. It’s a little device you hold in your hand and when the dog does something you want, you click this little device and it tells the dog that it did something that you like. You usually follow it up with a treat. They catch on very quickly that they’ve done a good thing, and they catch on quicker as to what you want them to do. This allows for accelerated training, so instead of training taking six or seven months, schools now take two or three or maybe four. We can use this method to enhance the training. So for example if I want to teach a dog to find a chair, I can do it faster with a clicker and a food reward, than just saying “good dog”.

Portrait of Mike Hingson.

Portrait of Mike Hingson.

Can you tell us your 9/11 story?

I was on the seventy-eighth floor of Tower One, and I was in my office when the airplane hit the building. We knew right away that something had happened because the building tipped about 20 feet and then it came back. Someone in the office could see fire above us. We had guests in the building, so my colleague David took the guests to the stairs while I packed up some things in my briefcase because I knew we weren’t going to be back for a while. When my colleague came back, we swept the office to make sure we hadn’t left anyone behind.

We started down the stairs. We passed people who were burned, and we had a couple of times when people nearly lost it on the stairs, but mostly people just talked to each other, and worked to make sure we didn’t have panic on the stairs as we went down.

We knew right away that something had happened because the building tipped about 20 feet and then it came back.

We met with firefighters coming up the stairs, they wanted to help me down. I had to convince them that it doesn’t matter – I mean, I met them on the thirtieth floor and I’d come from the seventy-eighth floor, I really didn’t need their help.

The plane hit around 8:45, and it took an hour to get down the stairs and get out. When we got outside we discovered there was fire in Tower Two. We had no idea why and nobody was telling anyone anything. So David and I just walked up Broadway, which took us almost past Tower Two.

David took some pictures of the fire up in the building and then, as he was putting his camera away, Tower Two collapsed right in front of us, about 100 yards away. This was a 400 yard tall building — everyone had to run for their lives: We ran south down Broadway, back the way we had come. We were in the dust cloud, all the dirt and debris, and we realized we had to go out of it. We ended up going into a subway station where we stayed for a while until a police officer came and told us that the air was better above and we should leave.

We walked for about 10 minutes and then Tower One, where we had been, collapsed. As it was described to me, there were fingers of fire shooting up hundreds of feet after the collapse.

As it was described to me, there were fingers of fire shooting up hundreds of feet after the collapse.

It was only after that second building collapsed that I learned after finally getting through to my wife on the phone, that both towers and been hit by terrorists who had hijacked planes.

How did your guide dog Roselle react to the situation?

Dogs don’t do ‘what if’ and they’re not concerned or affected unless something directly affects them. She focused, and she did exactly what she was supposed to do. And she did what she was supposed to do because I gave solid, confident commands telling her that I was okay, and not afraid and not in danger. That’s the team relationship between guide dog and person. Most people say “your dog led you out.” My dog did not lead me out of the building, the dog does not know where I’m going and how to get there. The purpose of the dog is to make sure I walk safely, so I’m the one who needs to be aware of my surroundings and where I want to go and how to get there. I worked hard to make sure I projected a calm, confident voice which allowed Roselle to feel at peace and allowed her to do her job.

Was it difficult remaining calm and confident as the events unfolded?

The advantage I had was that I was worried about Roselle staying calm. There was no sense worrying about the stuff I didn’t have control over. Oh sure, I thought about the building and wondered if we were going to be caught in there. But more important than that, I knew I had to remain focused for Roselle. I had a job to do, and I would be letting my teammate down if I didn’t do my job. I didn’t worry about the stuff I had no control over.

Speaking to Lincoln Southeast students and staff, Michael Hingson shows a paw print in his book Thunder Dog. Photo: Robert Becker

Speaking to Lincoln Southeast students and staff, Michael Hingson shows a paw print in his book Thunder Dog. Photo: Robert Becker

You travel the world inspiring others with your talks and your writing. Who inspires you?

I’m inspired by many people. I’m amazed by scientists who work to accomplish things and take a world view of what they do, Stephen Hawking for example. Ray Kurzweil, who invented the Kurzweil reading machine who I worked for for a number of years is someone I admire a great deal. My wife inspires me, she’s been in a wheelchair her entire life and has had to put up with many challenges. She’s a very bright person so I’m always inspired and amazed by her, she keeps me grounded and focused. I’m inspired by some of our politicians, the ones who look at the world in a selfless way. I’m inspired by the current pope, and the pope before him. I’d love to meet the pope one of these days. I try to learn from these people so I can try and put some of these things into practice in my own life.

What changes would you like to see in the future for sight-challenged people?

I would like society to be inclusive. When people or companies are inventing a product or opening a store or establishing a service, I’d like them to think: “are we making this open to everyone? How do we become more inclusive?”

I don’t like diversity. The term ‘diversity’ has already left out disabilities because that’s the way people have treated it. I’ve been to many meetings discussing diversity and all too often people with disabilities are left out of the discussion, even though in the United States, for example, 20% of people have a disability. So I choose inclusion. You’re either inclusive or not, there’s no middle ground. Inclusion is a very important thing and we just don’t do it.

What advice would you give to a sight-challenged child or young person?

Take risks, and don’t ever let people tell you that because you’re blind you can’t do things. You do exactly what you want to do and you find ways to live your life to the fullest. Blindness is not what defines you. What defines you are the choices that you make and how you choose to use the tools that God and society have given you. Don’t let blindness be the defining factor in your life.

Just because someone is different to you, don’t assume they’re not as capable as you. They might be even more capable

On the other side of that, the advice I’d give to sighted children is just because someone is different to you, don’t assume they’re not as capable as you. They might be even more capable. Don’t assume that just because a child is blind that they can’t do things. Find ways to include them, as you would want them to find ways to include you.

You can find Michael Hingson’s books Thunder Dog, and Running With Roselle, on Amazon. Visit his website at michaelhingson.com.

 

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.