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My Blade Runner Eyes

Photographer Nadya Lev was the toast of the fashion world, but it was only when she started going blind that she really learned how to shoot.

When I was 21, I shot my first magazine cover. It was for the 50th anniversary of Skin Two, a magazine of sex and fashion. The theme of the issue was “medical fetish.” At the time, the notion of having a chronic health issue was so foreign to me that it was easy to find exotic beauty in the trappings of sickness. My model wore a latex posture corset meant to evoke Victorian medical braces. Her arms were wrapped in long rubber gloves. Surgical scissors and Wartenberg wheels decorated her hair, which was coiled up in medical tubing.

That year, I became a well-known photographer within a few  niche subcultures. I shot nine more covers, for magazines with names like Elegy and Fiend. The models who had inspired me to begin taking photos flew to my city to work with me. I found myself on the lifetime guest list for every overseas party I grew up dreaming of one day attending. Over time, thanks in no small part to my gifted collaborators, my work entered the mainstream. Italian Vogue, MTV, VH1, Elle, Marie Claire, New York Magazine, and Harper’s Bazaar published my work in features on underground fashion.

Then, I had 15 eye surgeries. I went partially blind, and learned to navigate my world through a maze of hallucination-like visual distortions. And that’s when my photography truly reached the next level.

I had 15 eye surgeries. I went partially blind… And that’s when my photography truly reached the next level.

It all began with a LASIK surgery gone wrong. After a perfectly normal initial procedure, I had a complication called “corneal melt.” Just like people have a dominant hand, they also have a dominant eye. And my dominant eye’s cornea had gotten abnormally scarred as it healed from LASIK. The surface of the cornea took on the curvature of a funhouse mirror, and everything refracted though it began look askew. I now look back fondly on this (at the time devastating) period as an innocent time when most of my vision was still intact, because it was only a year later that shit got real. At 28, according to doctors at UCSD, I became the second-youngest person in medical literature to be diagnosed with genetically-inherited PXF glaucoma: a particularly aggressive type of eye disease that normally affects people over 65.

Glaucoma is a disease in which pressure builds up inside the eye, causing progressive and irreversible damage to the optic nerves. When the optic nerves become damaged, vision begins to decrease – first peripherally, then at the center. Glaucoma can’t be cured, but it can be controlled through medication and surgery. Many people don’t know that they have it until a large portion of their vision is lost, because the brain is creative at filling in the blanks when it encounters blind spots. By the time I realized I had a problem, I was almost completely blind in my dominant eye.

Everyone always wonders if the LASIK complication had anything to do with the glaucoma, and the answer from all my doctors was always “no”. I just happened to win two statistically improbable eye fail jackpots in a row. One in 112,500 people require disability leave from LASIK complications, and the number of people who spontaneously develop PXF glaucoma at my age per decade really is 1 in 7.5 billion.

I just happened to win two statistically improbable eye fail jackpots in a row.

What followed was a series of surgeries, surgery complications, and surgeries to fix complications. Most of these surgeries were different from one another, with esoteric names like trabeculectomy, intraocular lens implantation, and topography-guided PRK. Although each  surgery felt different, they all had one thing in common: a surreal alien abduction vibe. The surgeries would work for a little while, then fail after a few months. Meanwhile, the complications were accumulating. Following several failed glaucoma interventions, one doctor advised me to start shopping for a seeing-eye dog. Another suggested that I start learning Braille.

The situation reached a critical point while I was in Canada. I was right about to get a corneal surgery – state-of-the-art, but not yet FDA-approved – to fix the LASIK damage. Right before that surgery, my glaucoma spun out of control, more aggressively than ever before.

In most alternate-world timelines, I believe that this is when I went blind. But in this timeline, something lucky happened. I got introduced to a world-renowned ophthalmologist – Dr. Robert Weinreb, who is basically the Sherlock Holmes of ophthalmology. He has a medical degree from Harvard and an electrical engineering degree from MIT (both of which, I’m pretty sure, he earned simultaneously), he never sleeps, and every single ophthalmologist I’ve ever met knows his name. When he’s not busy conducting stem cell research to reverse blindness or running an entire eye institute, he somehow has time to operate on patients. And so it was that I appeared on his radar – via my scientist uncle, who’d done research with him at UCSD.

I flew straight from Montreal to San Diego for an emergency surgery on Christmas morning. The surgery worked for a couple of months… and then, like the others, it failed. It was a scary moment, but we we were not ready to give up. Dr. Weinreb did two more surgeries, taking a different approach than before. Unlike all previous attempts, these surgeries succeeded.

“Succeed” in this case means that the surgeries stopped the progression of the disease. I can’t currently get back the vision I’ve lost, but for the time being – no one knows how long, but it could be the rest of my life, or another year   – I don’t have to worry about losing additional eyesight. The glaucoma is under control.

When the dust settled, it was time to learn to live with a set of visual impairments that come from different parts of the eye being busted. My optic nerves, retinas, cornea, and lenses are all worse for the wear, and the different types of damage all result in different types of visual aberrations. Rather than considering it a loss, to me it’s a chance to find inspiration in a series of lush hallucinatory visions that make my world feel more mysterious, layered and dazzling than it was before.

It’s always snowing indoors now. The “snow” is actually visual noise, the result of damaged optic nerves…

For example, it’s always snowing indoors now. The “snow” is actually visual noise, the result of damaged optic nerves, kind of like a television tuned to a channel that the antenna can’t quite capture. I’ll be sitting across the table having a conversation with someone, and there’ll be a blizzard tearing the air apart everywhere around us. It’s as if all houses are inhabited by ghosts – not ghosts of people, but of strange weather phenomena, Fortean poltergeists that vary in intensity based on the color of the walls and the quality of light.

And when I look up at the sky, I see not one moon, but 8 or 9, with smudges and smears of light all around them. It makes me feel like I’m an explorer on another planet, looking up at the sky to see unfamiliar celestial bodies, making wishes on each one that I see. It’s better now that my cornea is mostly fixed, but there’s still a beautiful layer of light leaks, a feeling like all lights are wrapped in tinsel, a real-time lens whacking effect applied to everything I see.  

And of course, there was the most terrifying of glaucoma symptoms, the rainbows that appear when pressure is dangerously high around every light source, every street light, every lamp, every phone screen, blooming like flowers, savage colorful beacons transmitting the signal of “get help now, or you will lose all these colors forever.”

It took me a long time to find beauty in the visual distortions, and it took me even longer to find beauty in how the surgeries transformed my outward appearance. Every time I looked in the mirror, I saw all this evidence of every surgery that ever happened. I was always told that my eyes were my most beautiful feature, and now they reminded me of pain and loss. But after a time, I began to see beauty in that, too. My new artificial lens implants, , swapped in to fix the cataracts, reflect light differently, so that there’s always an extra sparkle inside my eyes. When I blink, you can catch them flickering like tiny cybernetic enhancements. “I can’t stop looking at your Blade Runner eyes,” someone told me once. I like being half-replicant.

“I can’t stop looking at your Blade Runner eyes,” someone told me once. I like being half-replicant.

It’s not always magical and amazing. After losing depth perception, all staircases forever look like slides. And I’ve lost the ability to read paper books, because even with reading glasses, the text is just too small. I’m a weird person to take to bookstores, because now, my way of experiencing books is open them, sniff deeply and inhale the pages. Whereas before it was just a vaguely-defined paper book smell, I can break it down into so many different components now: the musty paper, the scent of fresh ink, the leather cover, the glue used for binding. So, when the door of one sense closed, another opened.

For a long while after the surgeries, I was afraid to take new photos. I didn’t want to publish new work that was not on par with my old work, because I was afraid of how that would feel. My friends and family wouldn’t stand for it. A photographer friend gave me a lesson in lighting. My parents bought me a studio light and some modifiers when I was broke. My extended community surprised me first by chipping in for a new camera. Friends began to model for me with no expectations of results.

At first, my photos were terrible. I couldn’t even tell if they were in focus or not. Gradually, I began to work around my limitations. Or, more precisely: my limitations led to new breakthroughs.

A lack of control around my eyes’ function led to an obsessive, disciplined quest to master lighting. In studio photography, “shaping light” means bouncing, diffusing, tinting or directing light in specific and predictable ways using light modifiers. If I couldn’t make my retina or optic nerves transmit data as faithfully to my visual cortex as before, at least I could learn to carefully direct a strobe of light along a path, at just the right intensity, at just the right degrees, to illuminate something in an exact and perfect way.

I took care to compose carefully, rather than saying “I’ll crop it later.” I learned to achieve the desired shot in-camera as much as possible, rather than saying “I’ll fix it in post.” With the help of my incredibly talented retouching partner Marina Dean-Francis, I was able to explore new dimensions in color, mood and polish during the editing step.

I stopped relying on hair, makeup and wardrobe as heavily to carry the impact of the portrait, and focused more on the story of the person in front of me. I broadened my focus from portraying young women looking invincible to people from all walks of life, and all levels of vulnerability. I let the fragmented feeling of my visual impairment come through in my work, experimenting with glitch processes such as corrupting the image file to produce jagged, colorful artifacts throughout the image.

What I discovered is that seeing people… is less about how well I physically perceive them, and more about the ideas that our time together inspires.

What I discovered is that seeing people – truly seeing and celebrating them through my work – is less about how well I physically perceive them, and more about the images and ideas that our time together inspires. It doesn’t matter if I see in 240p rather than HD. This realization, combined with my newfound command of the tools, has helped me to create some of my strongest work to date. I know I’ll always have some tools for telling the stories that I want to tell, even if those tools change over time..

In his essay titled “Blindness,” my favorite author, Jorge Luis Borges, who did go blind from glaucoma, writes:

“For the task of an artist, blindness is not a total misfortune. It is an instrument… everything that happens, including humiliations, embarrassments, misfortunes, all has been given like clay, like material for one’s art. One must accept it … those things are given to us to transform, so that we may make from the miserable circumstances of our life things that are eternal, or aspire to be so.”

He ends his essay with a line from Geothe. Alles nahe werde fern, or: “everything near becomes distant.”Life is a gradual discovery of this fact, with higher and higher stakes as time goes on. I just happened to discover it more viscerally and literally than most people my age. The greatest gift my eye fail has given me is the ability to calmly survey whatever is in front of me and ask myself: “given that my vision is so potentially finite, is this worth looking at?” If so, look at it with all the love you can–this project, that face, this dream. If not, refocus your gaze on something else as gracefully as you can.

Try it for a week. Imagine that you have replicant eyes, with a replicant lifespan. What do you want to see the most? Bring more of it into your line of sight.

Top photo of Nadya Lev courtesy of Star St. Germain. 

Nadya Lev’s Instagram can be found here.

Health & Fitness

The First Blind Man to Kayak the Grand Canyon On Living With No Barriers

When Eric Weihenmayer climbed Mt. Everest, he swore to himself: "Don't make Everest the greatest thing you ever do."

When he was three years old, Erik Weihenmayer was diagnosed with juvenile retinoschisis, a rare disease that causes hemorrhaging in the eyes. Throughout childhood, though he couldn’t see well, he could still play basketball, ride bikes, and jump off rocks in the woods behind his house. But slowly, his vision deteriorated, until, at age thirteen, a week before starting high school in Connecticut, he went completely blind.

Eric Weihenmayer’s new book, No Barriers, details his adventures kayaking down the Grand Canyon.

“The first day of school, I had just been led into the cafeteria by my teacher’s aide—not a great way to become popular during freshman year—and I heard the ruckus of food fights,” Weihenmayer told Folks. “I remember thinking, ‘I’m scared of being blind and not seeing, but what I’m way more scared of is being left out of all the food fights. I don’t want to be sitting on the sidelines, listening to this joy and love go by and not being able to experience it.’”

This food fight-induced FOMO evolved into a fierce determination to prevent blindness from limiting his opportunities in life. Despite warnings that contact sports were forbidden to the blind, Weihenmayer became a high school wrestling star, and later discovered he was a natural rock-climber.

After graduating from Boston College, then working as a wrestling coach and a middle school teacher, Erik set out to “touch the top of the world,” as he’d put it in a later book: In 2001, he became the first blind person in history to reach the summit of Mount Everest, the highest point on Earth. (Scaling Everest is an insane feat even for those with 20/20 vision; one in ten successful climbs to the summit ends in death.) That climb earned him appearances on Oprah, The Tonight Show with Jay Leno, and on the cover of Time magazine.

Any climber of Mount Everest, sighted or otherwise, couldn’t be blamed for deciding they’d done enough treacherous nature-exploring for one lifetime and retiring to eat Doritos on the couch for the rest of their years. Not Weihenmayer. After he’d descended Everest, having just navigated the deadly Khumbu Icefall, his team leader slapped him on the back and said: “Don’t make Everest the greatest thing you ever do.” He took this challenge very seriously.

By age 33, Weihenmayer had become one of less than 100 people to climb all of the Seven Summits. In 2004, Erik and his Everest teammates led a group of blind Tibetan teenagers to 21,000 feet on the north face of Everest. In 2005, he cofounded No Barriers USA, a non-profit organization that aims to help people with physical and mental injuries—from disabled veterans and recovering addicts to elementary and middle school students—overcome perceived limitations in their lives. And in 2014, he became the first blind person to solo kayak the whitewater rapids of the Colorado River through the Grand Canyon.

No Barriers: A Blind Man’s Journey to Kayak the Grand Canyon, Weihenmayer’s new memoir, chronicles his time preparing for this latest stunning expedition, and his continuing mission to reframe our collective understanding of disability and human potential. His work extends beyond the empowerment of blind people, and aims to combat the learned helplessness that so often accompanies trauma or disability of any variety. We talked to Weihenmayer about the tools needed to lead a “No Barriers Life,” what it’s like to capsize a kayak in the roaring waves of the Grand Canyon, and why “blind people aren’t going to learn anything if you peel their oranges for them.”

Erik Weihenmayer at the top of Mt. Everest.

What gave you the tenacity and courage required to become the first blind man to climb Mount Everest and kayak the Grand Canyon? What made you so determined not to let blindness limit your opportunities?

I went completely blind a week before my freshman year of high school. The first week of school, I had just been led into school by my teacher’s aide—not a great way to become popular during freshman year—and in the cafeteria, I heard the ruckus of food fights all around me. I remember thinking, “I’m scared of being blind and not seeing, but what I’m way more scared of is being left out of all the food fights. I don’t wanna be sitting on the sidelines, listening to this joy and happiness and love go by and not being able to experience it.” I remember being motivated by that fear. There’s the fear of doing things that are new and scary; and then there’s the fear of sitting in that dark place forever. It’s scary to move forward, but I think it’s scarier to just sit there in that prison. Intuitively, I figured out how to thrash and bleed my way forward. It’s not like I’m some Super Blind Guy who doesn’t experience fear and is impervious to getting his butt kicked. Understanding that you’re gonna be scared and vulnerable is part of what “No Barriers” is about.

The Grand Canyon’s Rapids can be deadly.

While kayaking the Grand Canyon for the first time, you literally thrashed and bled—crashing into rocks, rolling under the rapids. Why did you choose to kayak the notoriously treacherous Grand Canyon?

I kayaked the Grand Canyon because I wanted to experience the incredible natural wonder of the world. As a blind person, you won’t understand or really experience this incredible place unless you’re in a rapid. You have to put yourself in the action to understand it: You’re this little puny human being riding the energy of this massive force, hearing the waves crashing on the miles-high walls above you.

Also, as I get older and fatter, and I’m teaching a lot at No Barriers, I ask myself, are all these ideas I’m teaching bullshit, or are they real? And the only way to know is to commit to this massive process of [trying something new and difficult]. I thought, It’s going to take me maybe six years to learn how to do this. I’ll be a test dummy to these ideas that I hope are true. It worked, but it was messier and there’s more blood than in the movies. There’s not a nice neat bow at the end. Life is messy. There’s still lingering fear. You never really conquer anything.

Weihenmayer navigates some particularly dangerous rapids.

For those who haven’t read your new book: How did you kayak the Grand Canyon, practically speaking, as a blind person?

Over the course of six years, I developed a great team and some pretty cool systems. The team kayaks behind me and yells out commands and directions via a high-tech radio [which I listen to through an earpiece]. We looked for many years for right radio system—on a rapid, even a half second delay is too long, it had to be almost real-time communication. We found a communications company out of the UK that specially built waterproof radios for us.

Every rapid has what’s called a line—a zigzagging path that takes you around the rocks and holes and other spots you don’t want to go near. A person kayaked in front of me to pick the line, and a person behind me called out commands through the radio based on what the line-picker was doing. A person trails in behind to pick up the pieces in case someone swims, and a person hangs out at the bottom, in the eddy, the calm spot of the river.

In 2004, you founded No Barriers, a nonprofit organization that aims to help people overcome perceived limitations imposed by physical and mental injuries. What is the philosophy behind the organization?

The conceptual founding of No Barriers came from this climb I did with two of my heroes—Mark Wellman, a world-famous paraplegic who did 7,000 pullups on the rock face while climbing El Capitan; and Hugh Herr, a double leg amputee and scientist at MIT’s biomechanics lab, who works on fusing humans and machines. After he lost his legs in a climbing accident in the ‘80s, he developed prosthetic legs that enabled him to climb better. The three of us did this climb together—I think of us like the Teenage Mutant Ninja Turtles, a very unique team. We carried Mark to the base for a couple miles, and I used my system where I was scanning up rocks and cracks.

Kayaking the Gates of Lodore.

I realized each of us had figured out how to break through huge barriers in our own lives. I thought, “Is there some universal thing we can tap into that helps us figure out how to get back on track after things throw us off our trajectory? Are there universal pieces you can use to build a map in front of you to confront obstacles and harness energies to increase your chances of emerging at the end of the journey having changed? Gotten better, stronger?” That climb was the first time I thought about that, and No Barriers grew from there.

The beauty of No Barriers is that it’s based on the idea that we’re all in the same boat, regardless of the type of physical condition we’re coping with. I’ll sit at a table at a No Barriers event with a little person, a lady with a full heart transplant, a guy who’s struggled with obesity, a veteran struggling with pain management and sick of taking painkillers from the VA, a CEO trying to lead a team, a blind kid and his mother — and we’re all sitting, talking, feeling like we’re completely in the same community, even though we’re absolutely all different. It’s about celebrating how you break through barriers.

What are some the main tools the No Barriers model teaches when guiding people to make recoveries and transform their lives?

We’ve worked hard trying to figure out what those tools are. We’ve identified seven main things: [Vision, Reach, Pioneer, Rope Team, Alchemy, Summits, and Elevate.] Vision, the first one, is not like being able to see into future—nobody can do that. As I see it, Vision is sort of shining a light inside and recognizing something inside yourself—whether you want to call it the soul or the human spirit or a light—and trying to illuminate what that is. When bad things happen, a lot of people blame others and turn outward, thrashing like wild animals. What we’ve tried to show people is how to turn inward, pull out that thing inside, and ask “How do I grow it and nurture it and use it to change myself?” We call that Vision.

We also talk about Alchemy: When really crappy things happen to you, how do you use the energy of that to propel yourself instead of letting it crush you?

Using a term from mountain climbing, we talk about building a “rope team.” When climbing mountains, you’re roped together to your team—you summit together, you might die together. We talk about how to build rope teams in our lives, because a lot of people’s communities are broken.

Then there’s Elevate. The sherpas on Everest always say, “The summit isn’t the real summit, it’s only the halfway summit.” When you summit a mountain, you pound your chest because you’ve accomplished something, you’ve learned something new. Your obligation becomes to bring those new gifts down the mountain and use them to elevate people. It can be hard to figure that one out—because we partly live in a selfish world. But we encourage people to ask, “How can you use those gifts you’ve learned through No Barriers to elevate those around you?”

What did it feel like to actually have kayaked the Grand Canyon after six years of preparation?  

It was sort of surreal. For six years, I dreamed about this and feared certain crusher rapids. You get through that and it’s sort of crazy—[the experience] is in me somehow, but it’s almost like you can’t even imagine yourself doing it. Everest was the same way. That was me that stood on top of that thing and was in all these magazines. One magazine headline was like, “Blind to failure,” but it’s like, No, I wasn’t blind to failure. I could’ve failed. When I stood on top of Everest, I shattered the world’s expectations, and I also shattered my own. It was the same with the Grand Canyon.

In Tibet, where you taught blind kids to climb mountains, blind people are often treated as social pariahs, spit upon and shunned. That’s not the case in the United States, but there’s still a lot of work to be done when it comes to inclusiveness and understanding of disability. What does Western culture get wrong when it comes to our collective understanding of blindness and treatment of blind people?

During his time in Tibet as a climber, Weihenmayer took a personal interest in the way blind kids could be ostracized in their local communities.

In Tibet, blind kids were sort of the scourge of society. It’s believed blindness is a punishment for something committed in a past life, or a sign of inner demons. People spit on them in the streets. That’s not an indictment of Tibet—in any community of scarcity, guess who falls to the bottom of the caste system? But Sabriye, [who ran a school for the blind in Tibet], had this amazing goal—to make these kids super educated so they couldn’t be invisible, they couldn’t be scourges—to get them jobs so they’re sending home a paycheck. It’s hard to be a pariah if you’re sending home a paycheck. She changed the way people see disability in Tibet in just fifteen years.

In the U.S., I’ve worked with blind kids who come from families who straight up love them. But they’re often [overprotected.] One kid wasn’t allowed to go to the mailbox, because his parents thought he’d get hit by car. He just sat in his room and played video games all day. It’s not even prejudice—people just want to protect you and box you in. But then you aren’t able to discover anything. I’d rather be spit on than have someone peel my oranges for me. [One of my students had never peeled an orange.] You gotta be able to flail and bleed. One of the big breakthroughs in the blindness community is recognizing that blind people aren’t going to learn anything if you peel their oranges for them, even if you do it out of love.

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

Pinky Fang, The Artist With Different Eyes

Being blind means more than one thing, and It doesn't always mean you can't see.

Megan Ultimate, who works under the alter ego Pinky Fang, is a twenty-nine year old visual artist from Wellington, New Zealand. She is also blind.

Pinky has a condition called Retinitis Pigmentosa, which is slowly stealing her vision and literally changing the way she looks at life.

Writer Sarah Wilson spoke with Pinky about the role blindness plays in her life and work.

Pinky Fang always knew that she was going to be blind. For her, Retinitis Pigmentosa is genetic. Her father has it, as does her uncle, and her grandmother. Pinky was five when she started exhibiting symptoms of the disease.

“There’re actually several hundred different strains of RP,” she tells me. We’re sitting together behind the counter in the record store where Pinky works on the weekends. She’s passionate about music, has been a DJ for bars and charity events, and has an enviable collection at home.

“If you don’t inherit RP, it can happen to you pretty fast,” she continues. “But for me, it’s been a slow decline my whole life. I guess it’s a genetic lottery what type of eyes you get.”

Pinky Fang, whose real name is Megan Ultimate.

Pinky Fang, whose real name is Megan Ultimate.

Although she retains some vision, Pinky is legally blind, and is a member of New Zealand’s Blind Foundation. To be classed legally blind, a person’s field of vision must be less than twenty degrees in diameter. A fully sighted person has 180 degrees.

“When I found that out, I thought, ‘Oh well, I have way more than that.’ I went to an ophthalmologist to get tested, and it turned out I only had six degrees. So that was a big shock. It really hit me then.”

Pinky describes what she sees as “like looking through a cardboard tube.”

“There’s nothing around the outside, I don’t have any peripheral vision. I also have a separate astigmatism that makes the middle bit blurry, but as long as I wear my glasses, that circle in the middle is fine.”

Pinky’s symptoms became more obvious when she was about fifteen.

“The first thing I noticed is I couldn’t see at all at night. Your retina just doesn’t adjust, so I couldn’t see a thing as soon as it got dark. And even during the day, I started bumping into things and falling over.”

Pinky’s always been an artist, and knew early on that art was what she wanted to do with her life.

“I studied some other stuff for a while, but art is part of me. People get confused by how I can be blind and do art. They don’t understand that the word ‘blind,’ doesn’t necessarily mean no vision at all. And even if I was totally blind, I’d still find a way.”

Four years ago, the stress and anxiety associated with not being able to see properly made Pinky realize she needed to reach out for help.

“I started waking up, and another patch of vision would have gone overnight. It was scary.”

It was at that point that she joined the Blind Foundation.

“That was a real change. I’d never used the word “blind” to describe myself before. But they taught me how to use a cane, and introduced me to support services like counseling.”

Pinky was part of the Foundation for three years before she went on the waiting list for a Guide Dog.

It was during her time with her first dog, Penny, that Pinky became an advocate for people learning more about blindness and Guide Dogs.

“I wanted to spread the message that ‘blind doesn’t necessarily mean ‘no vision at all,’ because that lack of understanding can actually make it harder for blind people. It’s difficult when you sit in the grey area.”

She worries about people thinking she’s a fraud, because she can see some things some times, and not others, an inconsistency which is normal for blind people, but one that’s easily misunderstood.

Last year, a bus driver accused Pinky of faking her blindness.

“It was so public, and so humiliating. It got on the news and everything. I tried to use my Blind Foundation card to get my fare on the bus, and the driver laughed at me and said that I wasn’t blind. It was awful. I was so upset, I’m still upset now.”

She’s also an advocate for teaching people how to interact with Guide Dogs.

 

An illustration of Pinky's dog,

An illustration of Pinky’s dog, Penny.

“Other people are not supposed to touch them or even talk to them while they’re working, because it can be really dangerous if they get distracted. But it happens all the time, and it’s really frustrating. It’s not like it’s not obvious; she’s wearing a Guide Dog coat, I’m holding her harness.”

Guide Dogs have at least two years of training before they are matched with a person. Then, a trainer from the Foundation works with the dog and its owner to ensure they can work together.

“My first dog, Penny – we had a rough time. I didn’t really know what I was doing; it was all new to me. People assume that Guide Dogs just know exactly what they’re doing, like they instinctively know where you need to go, and of course they don’t. There is a lot of training involved.”

“They still need you to direct them. If you don’t, they’ll just lead you to the park every time,” Pinky laughs.

Not all dogs are suited to the work, despite the training. Penny was eventually retired to be a pet.

“I was so sad about Penny,” says Pinky. “It was really hard to say goodbye, because I had spent months bonding with her. But it’s not fair to her, if she doesn’t want to work, and it was dangerous for both of us. I have to rely on the dog to keep me safe, and she couldn’t do that.”

After a six-month break, Pinky has just been matched with a new dog, Lyric, who is currently sitting calmly at our feet. Lyric will live with Pinky, stay with her at the record store, and accompany her every day to the art studio she shares with several other women.

Pinky says being blind doesn’t define her work as an artist.

“I kind of prefer that people don’t know I’m blind when they look at my work. I don’t want to be thought of as “that blind artist.” I want my art to be held to the same standard as everyone else’s.

“I don’t want to people to say ‘Oh, that’s really good for a blind person.’ I don’t mind if they know that second, but I don’t want it to be the first thing they think about.”

The Pinky Fang name, along with the Kitty Gang brand she has created, are known up and down the country.

Her art has a distinctive bold, quirky style, and she works in a wide range of disciplines, including drawing, painting, jewelry and textile design.

“I like to insert my sense of humor into my work. Nothing I do is generally too serious or meaningful – I just like to create things that people will find interesting and take some enjoyment from. I like people to laugh or smile when they see my work.”

The studio wall next to her desk features a large-scale mural of multi-colored cats, which are a favorite subject.

“I’ve always been a cat lover,” she laughs. “There’re quite a few people now who have personalized Kitty Gang tattoos, which is amazing – it’s the hugest honor to have people literally wear your work on their skin.”

Being blind influences, but doesn't define Pinky's art.

Being blind influences, but doesn’t define Pinky’s art.

“Do you think that being blind informs your work at all?” I ask. She nods.

“Well, sure. I mean, it’s not a subject I’ve explored much in itself, but it definitely affects the size and mediums I choose to work in. I prefer to do smaller scale stuff as it fits in my line of vision. Although, one of my favorite things to do is larger scale spray paint work. It’s hard with my eyesight, but I just take my time and do it piece by piece.”

Pinky aims to produce at least one new piece every week. She has held several solo exhibitions, and is planning another one for later this year.

I lean back in the chair and look at the dog curled peacefully at our feet. I wonder out loud what Pinky’s plans are for the future. She’s silent for a bit.

“That’s a really hard question,” she says. “I don’t want to fight against what’s happening. There’s no way of knowing when my vision will go completely, it’s different for everyone. So I just want to go with it. And I just hope that whatever I end up doing, it’s creative.”

Q&As

Sightless Seeing

This blind travel writer featured on This American Life says the world gets smaller for him when he travels, not bigger.

On Ryan Knighton’s 18th birthday, his doctor told him he had retinitis pigmentosa (RP), a progressive genetic disease that leads to night blindness, tunnel vision, and eventually total blindness. At the time, he was working in a warehouse driving forklifts (poorly), trying to save money to go backpacking in Europe.

The diagnosis drop-kicked Knighton onto an entirely different path. Suddenly forced to think about his future, he enrolled in college, where he discovered a knack for writing and professors who encouraged him to tell his story. This eventually led to his first memoir, Cockeyed, which describes his transformation from secretly seeing-impaired (covert strategies included hiding his blind stumbling among the expected calamity of punk clubs) to openly blind man.

At 43, he is now a memoirist twice over, a journalist, and screenwriter. He’s reported on the world’s largest rattlesnake roundup, learned to surf from a deaf friend, and gotten lost in a hotel room. His most recent screenplay is an adaption of Lisa Genova’s latest book, Inside the O’Briens, about a father with Huntington’s disease. He’s been interviewed by Ira Glass on This American Life, and Ryan Reynolds is currently attached to direct the film version of Cockeyed. We spoke with Knighton about eating insects, the unexpected pleasure of being taunted by a Mexican grandma, and the unique perspective his blindness affords him.

What did you think your future was going to be like before your diagnosis?

My plan at that point was none. I was a shit student. I had just come out of high school with C- and B-minuses. I didn’t have any kind of stellar path in front of me. I realized I’m not going to be able to work with my body, so I’m going to have to go to school. If you have to go blind, I recommend doing it at that age because you haven’t made any wrong choices yet. It’s not like you’ve committed yourself to a life of being an electrician.

If I hadn’t gone blind, I wouldn’t have become a writer. There’s absolutely no way that would have happened. I don’t know what I would have been, but I know I wouldn’t have been this.

How much does being blind influence you as a writer?

It is me as a writer. Early on some older writers told me, “You should write about it, but write about it as a point of view, not as a subject.” That always stuck with me. I’ve really been trying to do writing where blindness is taken on as an accepted point of view not as the focus.

Blindness sort of defamiliarizes the world. It’s primed to be satire for that reason, because you are the satirical point of view. You’re in the world that didn’t imagine you in it. Even in the most banal circumstances — like standing between urinals in a public washroom — there’s so much to write about. Are the urinals going to match your interpretation of the room? If you fixed my eyes, I don’t think I’d know how to write the same way anymore.

What is one of the hardest things about being blind?

My biggest issue is everybody else’s problem with it. All the issues everyone has with disability are always being projected on me, their fears or their sentimentality about it. I’m at a corner and eight people just suddenly grab me and carry me across the street. They rush to help me, even though I don’t want it or need it, because they get a kind of sickly good feeling from it. You’re kind of like a walking anti-depressant. I put on my socks and people applaud. I cut my meat in a restaurant, everybody cheers. Just being out in the public world, I’m constantly being infantilized.

All the issues everyone has with disability are always being projected on me, their fears or their sentimentality about it.

My wife and I were at this clothing store once. I was in the changing room, and she was outside. The guy who worked there said to her, “I just want to give you props for what you do for him, for being with him.” My wife was like, “What do you mean, like marrying him?” He’s like, “You know, it’s just so good what you’re doing. It’s just really great,” like it was some kind of civic duty.

What drew you to travel writing?

I think the job of the writer is to go where you’re not wanted or you’re not invited, and travel writing seemed incongruous with being blind in many ways. My mental map of my neighborhood in Vancouver’s Little Italy is so rich and detailed, that, ironically, when I travel, the world gets smaller, not bigger. When I’m on the street in another city, the thing next to me could be a mattress store or a bank. I don’t know. I move into a pencil sketch instead of a broader sense of the world by traveling.

There is no story if everything goes fine, but in my case sometimes very small things become big adventures. When my lawyer is doing my contract for editors, he loves to say, “Imagine getting off a plane and you can’t see. The airport is going to kill you. You’re going to be in the terminal and living there forever.” Everything feels like it could escalate at any moment into being a disaster of some kind. When I went to Cairo for AFAR, it wasn’t the revolution that terrified me; it was traffic. I couldn’t cross the street on my own. It was just insane.

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You seem to throw yourself into situations most people would run from. Have you always been so fearless?

No, and I’m actually not fearless. My first reaction to being told I was going to be blind was a very working-class reaction, which was, “How am I going to earn a living? Who’s going to hire me?” The next thing that crept in around the blindness, which I hadn’t really anticipated, was the danger of being safe. My life was very stable. I had my routines. I had the places I went. I’d carved out my trapline. Now suddenly you realize that the backhand of blindness is boredom, and securing yourself against embarrassment.

That kind of cloaking yourself in safety and stability is really crippling to me. It’s like, “What is the friction in my day anymore? Where is the surprise?” I find that a lot of this has been driven by me constantly hedging against the encroaching boredom that comes with being safe all the time.

What is one of your most embarrassing travel experiences?

Years ago, my wife and I went to Mexico and I wanted to have the Hemingway Old Man and the Sea moment. I wanted to catch a big fish and wrestle with the weight of something like that. We got on a boat with a couple of teenage guys who were taking me fishing. And as soon as the shoreline disappeared off the horizon, I became violently seasick.

My eyes have fluid in them. Think of a pond that you can see through and now imagine that somebody threw a bunch of sand in it. That’s what my eyes do with the fluid. It’s moving around, but there’s a sense of a straight line on the other side of it. That would be the horizon. As soon as that was gone, oh my god, I thought my head was going to implode on itself. The entire world just went liquid.

I kept twirling my finger, signaling up to them, “Turn around.” They thought it was the funniest thing on the planet. When we got off at the dock, I walked by this Mexican grandmother who had a booth selling trinkets, and she totally mocked me. She was like, “Oh, poor boy. Oh. Poor tourist. Oh, the boat.”

No extra sympathy for being blind in that case.

No, it was kind of nice to be treated as just another jerk tourist as opposed to my usual smothering and sympathy. There was no condescension. They lumped me in with all the other gringos, and that was fine.

It was kind of nice to be treated as just another jerk tourist as opposed to my usual smothering and sympathy.

What sort of experiences you do intentionally seek out as a blind travel writer?

I try to find trips where my point of view can add something to the conversation that might otherwise go unnoticed. It’s usually around the senses other than sightseeing. For example, when I did the rattlesnake roundup for VICE, I wanted to hear what 700 rattlesnakes sound like. It’s hard to find those experiences. You can’t just Google “cool smell” and find a trip.

Can you tell me about a trip that came your way because you’re blind?

I just did a travel piece for Popular Mechanics about a guy named Bun Lai. He plunked down beside me at the bar at Chicago’s Ideas Week and said, “You have to come out to my restaurant.” He’s an MMA fighter who is also a sushi chef in Connecticut. He only serves invasive and underused species, so it’s all like lionfish and weird weeds and stuff. There’s no tuna, no salmon. I’m like, “I totally want to, because I want to see what it’s like eating insects.”

In that situation it might be easier not to see.

Yeah. People are afraid of a lot of his food because it looks so different. His aesthetic was partly shaped by this young adult novel, Decay, which had a profound impact on him as a teenager. It was about a kid in World War II who was on a boat that gets torpedoed. He’s blinded and ends up washing ashore on a desert island. It’s all about him diving and foraging, and how he survives because his inhibitions are gone because he doesn’t see what he’s eating and what he’s doing.

Bun took me out skin diving for clams off the coast. Then we foraged for seaweed out in these little rocks way out in the ocean, and foraged in the forest and caught Asian shore crabs. It was fantastic.

A candid photo of Ryan Knighton.

A candid photo of Ryan Knighton.

Where are you headed next?

I’m going on a safari in Zimbabwe for AFAR. When the editor first called, she said, “Have you ever thought about going on a safari?” I said, “Fuck no.” That’s like asking me if I want to go to a drive-in movie. Why would I do that? I’m just going to be sitting in a car while somebody tells me the rumor of what’s going on out there. Then I realized it’s not about the animals for me. It’s about the guiding. I’ve been guided my entire life. I want to feel what it’s like to be guided in the most extraordinary sense and really think about the idea of guidance and what it means.

Most people focus on the animals in the safari, but there’s this interloper.  It’s that blind point of view — it amplifies things that everybody else turns the volume down on.

You mostly write screenplays now. What’s it like writing for such a visual medium?

I find that screenwriting ironically is the most comfortable fit for me. It’s endlessly surprising to me that screenwriting could be suitable to a blind person. But, when you think about it, a screenplay is basically a blind person’s document. You’re trying to describe a picture that nobody else can see.

When you think about it, a screenplay is basically a blind person’s document.

Nobody in Hollywood has really ever questioned that I can or can’t do this. Nobody has said, “Do you even watch movies?” In fact, I get a lot of compliments on how super visual my screenplays are. I think maybe sighted people think they have described things more visually than they have, because they’re not used to putting their mind’s eye into words the way I have to.

It’s sounds like the combination of being blind now and having been sighted in the past makes screenwriting a great fit.

When you go blind, your mind’s eye doesn’t go blind with you. You still want to see things sometimes. My wife has pointed out that my speech got more visual as I went blinder. I won’t say, “See you later.” I’ll say, “See you around the pool hall.” When my students are dead silent in front of me, I’ll say, “Are you guys giving me Easter Island stone face?” Part of it is just to amuse myself, but I think part of it is because I’m doodling on the world around me all the time. I’m trying to give things visual dimension, even if it’s cartoony and my own self-imposed picture.