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The Good Fight

The Big-Hearted Org That Brings Scuba Diving To Everyone

Disability doesn't exist underwater. Founded by Jim Elliott, Diveheart is an Illinois-based organization that wants to make sure everyone can experience what that's like.

Scuba diving is the only gravity-free activity in the world. For the physically impaired, this is an especially attractive fact. “The obstacles that individuals with disabilities face on land disappear in this forgiving gravity-free underwater world,” says Jim Elliot, the founder of Diveheart, an Illinois-based organization which submerges the disabled. The organization works both in pools and open water and now has programs from Atlanta to Asia. They are the world’s leading force in adaptive scuba diving.

The idea for Diveheart, which Elliot started in 2000, came about while instructing a group of blind people in skiing. His oldest daughter, who is blind, was involved. Elliot was struck by the enormous psychological benefits that the activity afforded the participants and wondered how it could be expanded. “I got to thinking, ‘Gosh, you can only ski at certain times and in certain places but there’s a pool in every community,’” Elliot recalls. Some years later, Elliot left his job in the media business to build Diveheart. Though founded with his own money in Illinois, the organization is now supported by individuals and foundations around the world. Diveheart has trained “well over 1,000 instructors” in the Caribbean, Malaysia, China, Australia, Israel, England, Singapore and hundreds of cities in the U.S. Recently they launched a team in Borneo.

“The obstacles that individuals with disabilities face on land disappear in the forgiving gravity-free underwater world [of scuba]…”

The organization works with all kinds of disabilities and conditions, from muscular dystrophy to blindness to those suffering with PTSD. Instructors work within a unique training program that Elliot developed, part of which involves trainers undergoing disabled “simulations”, having to do the lessons with a given disability. Diveheart also participates regularly in university research studies aimed at figuring out the various therapeutic benefits that diving affords to the mentally and physically handicapped. We reached out to Elliot to hear more.

An older man with a shaved head in scuba gear helps a disabled man in a wheelchair into the water,

Jim Elliott, founder of Dive Heart, helps a student into the water for the first time.

How did you first get involved in adaptive scuba?

I have a long history of working with people with disabilities. My dad was a disabled army vet; growing up one of my best friends had cerebral palsy and I’d walk him to school because the bullies would pick on him otherwise. I married a lady with two boys and they had their issues, healthwise, and then we had two children together. My oldest daughter was blind and my youngest ended up having scoliosis. I was a journalism major at Northern Illinois University. I started diving thinking that if I ever met Jacques Cousteau as a journalist I better know how to scuba dive. I just fell in love with it.

How did you get Diveheart off the ground?

I started diving thinking that if I ever met Jacques Cousteau as a journalist I better know how to scuba dive. I just fell in love with it.

My youngest daughter went to Shriners Hospital to have work done on her spine. I knew quite a few people with physical disabilities from there. When I first started I had this idea for the trademark, the dive heart, and I went to a trademark attorney friend of mine. I told him my crazy idea. He and his partners decided to handle all of the legal registration stuff pro-bono. They’ve been watching our back ever since and haven’t taken a dime. Could not have done it without them. We initially started with Shriners Hospital and the Rehab Institute of Chicago then started working with the VA hospitals and special rec associations. We began to expand. I started teaching instructors all over. I became the number one instructor trainer in the world for adaptive diving.

A group of dozen or so scuba divers, many of whom are disabled or in wheelchairs, posing on land in a group shot.

Diveheart is the world’s leading organization for adaptive scuba diving.

How did you learn how to train others?

Having created a training program for the blind ski group, and working with my own kids, I had a fount of knowledge that was very helpful. There were some organizations out there and I compared what training programs worked best. We worked a few for some years but I saw a lot of flaws and about five years ago we launched our own training program and certifying organization. Now we train instructors all over the world and have really become the cutting edge training program for adaptive scuba.

What is the training course like for divers?

We require the person to begin training through a standard agency, like PADI. They learn the basic science of diving (the number one PADI program in the world is in Key Largo and they do our programs every month). They go through that as far as they can then they come to Diveheart. They get a book and do online training. Then we get them in a pool. That’s maybe all they want to do. But if they want more we get them into open water. If they can’t afford to take one of our trips, then we have scholarships.

What is some of the research Diveheart has been involved in?

When autistic divers go underwater the ambient pressure is soothing, like a weighted blanket.

With Midwestern University we did the first study on autism and scuba therapy. In most cases this is a cognitive disability but sometimes there’s a physical component as well. When autistic divers go underwater the ambient pressure is soothing, like a weighted blanket. Going underwater also eliminates surface distractions, like a sensory deprivation room. That helps them focus. I remember we once took a kid who was non-verbal, who stood up at the end of a twenty minute session in four feet of water and said to the teacher, “That was amazing, I’d like to try that again.” Our mouths just fell open.

Researchers from the University of Illinois found, working with our participants around the country, that the very first pool session is the most powerful. That’s the one that creates the paradigm shift. Suddenly it’s not Johnny in a wheelchair anymore, it’s Johnny the scuba diver.
In 2011, doctors from John Hopkins found that when you get deep it creates a serotonin kick. They were working with one of the teams we had trained down in Cayman. Eighty percent of the PTSD symptoms of the veterans involved in the study were alleviated on this trip. We knew anecdotally that diving helps with pain management. We’ve had guys with chronic pain say to us on dive trips that they become pain-free for the first time. It’ll last that whole week then two additional weeks after.

A bald man helps a man with cerebral palsy into the water for a diving lesson.

Diveheart has trained “well over 1,000 instructors” to help disabled divers feel empowered underwater.

Right now we’re doing research with Northwestern and Midwestern universities on developing a ventilator system that will allow for fully paralyzed divers to get deeper. We’re working with university medical researchers in Malaysia as well. The top people in tourism there want to make Malaysia a destination for adaptive scuba, which is really exciting.

What are some ways in which you have seen scuba change lives?

We had one Marines veteran, Greg Rodriguez, who had a traumatic brain injury. He tried to commit suicide twice before he came to us. He told me, “What the doctors said I have is a traumatic brain injury but I call it my worst nightmare. But Diveheart changed everything.” Diving turned his life around. We also had a young girl who was a barefoot water-skiing champion, Amber Rangel. She caught a jump wrong at nineteen, landed on her head and is now a C5 quad. She was so depressed she wouldn’t leave her room. Her sister drug her screaming to one of our events.

If someone is born with a disability, it could be the first time in their life they see themselves upright. That’s the high for me

When I got her standing up underwater and she looked down and saw herself vertically, using her breath to control her buoyancy, totally independent, she said, “Oh my god, I’m standing up for the first time since my injury.” This happens a lot. If someone is born with a disability, it could be the first time in their life they see themselves upright. That’s the high for me: seeing someone get that aha moment. It just changes everything. Now they focus on what they can do, not what they can’t. That inspires people around them, too. It’s a ripple effect that really can touch society.

Essays

Regaining Sight Of Her Happiness After Blindness

Losing her vision from occult macular degeneration could easily have placed Ashley J. Smith in a downward spiral. Instead, she chose joy.

In seventh grade, Ashley J. Smith moved from the back row to the middle of the classroom in order to see the blackboard. Her vision was deteriorating and she didn’t understand why. She hid it from her classmates and teachers.

Fitting in, losing her sight, and trying to understand what was happening was a lot to handle. Eyeglasses didn’t correct her vision.

Her parents took her to a number of specialists. She went through all kinds of tests: ink injected into her veins, electrodes stuck to her head, and wires attached to contact lenses in her eyes. Some results came back normal. A few doctors misdiagnosed her and others dismissed her.

It took a number of years for her to be diagnosed with Occult Macular Dystrophy, a rare genetic eye disorder that causes vision loss.

Folks spoke with Smith about losing her vision, her diagnosis, and how she found happiness.

A woman with occult macular degeneration with brown hair, a blue top, and a black blazer.

Ashley J. Smith was only in seventh grade when she started losing her vision due to occult macular degeneration.

When did you start getting answers?

When I was in my mid-20s, a doctor referred me to Dr. Edwin Stone at the University of Iowa. I was evaluated by the people at the forefront of rare blinding conditions. While they still couldn’t give me any answers initially, they at least gave me hope and treated me with dignity.

Several doctors called me “an interesting case…” I am an interesting case, scientifically speaking. Buras an insecure teen and young adult, it was invalidating and insensitive [to say].

Prior to that diagnosis, several doctors called me “an interesting case.” Now, I shrug that off.  I am an interesting case, scientifically speaking. But (back then) as an insecure teen and young adult, it was invalidating and insensitive.

I found out I had Occult Macular Dystrophy a few days before I turned 38.

What did you learn about your type of vision loss?

Dr. Stone told me they found my gene, the mutation responsible for my particular vision loss, which is Occult Macular Dystrophy. I felt hope, but I definitely wanted to cry.

While I’m thrilled about the possibility of a cure in the future—identifying the defective gene is the first step—I’m not holding my breath. It would be amazing to have my sight restored, but I’ve also been working really hard to be okay without it.

As a child, how did you manage in school?

I attended public school in Arkansas in the 90s. I was socially anxious as a teen. It’s ironic that I ended up studying that in graduate school. (ed. Ashley Smith got her Ph.D. in Clinical Psychology.) I was mortified at the prospect of anyone knowing about my vision. I was convinced they’d judge me.

I was afraid that others would know how bad my vision was and shun me. I got to a point where I realized that something had to change.

I had trouble reading the board in class, but I was good at listening. Sometimes, I would pretend to have to sharpen my pencil so I could walk closer to the board. Then, I’d hurry and read as much as I could and rely on my memory when I got back to my seat.

What was your biggest challenge?

Driving. When I had to stop driving in 2015, I was in a pretty dark place emotionally. I felt like I had lost my independence, and I was afraid that others would know how bad my vision was and shun me. I got to a point where I realized that something had to change.

What changed?

The biggest change was talking openly about my vision loss. As a clinical psychologist who specializes in the treatment of anxiety disorders, a nice side effect of my job is really good coping skills. I used my CBT (Cognitive Behavioral Therapy) skills to help me deal with internal distress, and I started making changes in my life to promote well-being and happiness.

I started a private practice in April 2017 after working at a nationally recognized anxiety specialty center for seven-plus years and at a children’s hospital for two years before that.

I work with children and adults, most of whom have an anxiety or obsessive-compulsive spectrum disorder, though I do work with people who also have depression disorders, ADHD, health conditions, and other stressors. I incorporate positive psychology practices into treatment. I also present workshops locally and nationally, consult with other professionals, and do some writing.

A woman wearing sunglasses with occult macular generation standing before Denali.

Smith posing at Denali National Park.

What are the benefits?

The more I share, the more I get a chance to connect with others and to realize I don’t have to hide my vision. I spent decades doing that because I thought it was a fundamental flaw.

The more I share, the more I get a chance to connect with others and to realize I don’t have to hide my visio

The first time I told my story was at work. We had a support group. My heart was pounding. It was very therapeutic. A big part of my personal journey was to share my story publically. The response is positive.

How much can you see today?

I have a blind spot in the middle of my field of vision. What that means is that if I look directly at something, it tends to disappear depending on how big and how close it is. For example, if I extend my arm, my fingernails disappear.

I’m sensitive to brightness. Being outside in the sun essentially shuts down my eye and is painful without sunglasses.

My peripheral vision is intact. I rely on it to compensate.

What do you do for fun?

Being open lets me interact with others, which is all positive.

My 2017 New Year’s resolution was to try one new experience every week. I’ve stuck with it and it’s been a fun way to move through life. I’ve taken ballroom and swing dance classes. I read, cook, and travel. Recently, I tried floating in a sensory deprivation tank. I Google “new experiences,” and try things I’ve never tried before.

I just got back from Paris and plan on seeing the Mayan ruins. I write about it on my blog, A Blind Quest for Happiness.

Being open lets me interact with others, which is all positive.

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.

 

Essays

Seeing-Eye Runner

For three days, I served as the sighted partner and guide for my friend, a blind runner, during a race through the Colorado Rockies.

Frequently runners along the trail asked Luanne Burke, “Are you blind?”

“Yes,” Luanne would reply.

“Totally blind?” they’d pry further, as if disbelieving a blind woman would be running past them on a single track trail.

“Blind enough,” Luanne would respond.

And yet, when I asked Luanne (5 days before the event) to be my partner for the TransRockies Run, a three-to-six day tandem adventure trail race through the Colorado Rocky Mountains, she jumped at the chance. “We live in a mobile world and when you aren’t a part of it, you’re really aware of it,” Luanne told me.  She confessed that my crazy proposal to run the trail race with me as her guide would quite possibly be her last chance to get onto the mountain trails and appreciate the pinhole images she could still see.

“We live in a mobile world and when you aren’t a part of it, you’re really aware of it.”

Luanne has been striking out on her own despite her visual impairment for a long time. She recalled the last hike she’d done on her own. Struck by how such a visually impaired individual could navigate on her own, one person on the Telluride trail asked her, “How’d you find your way to the trail from the hotel?!” And perhaps just as many of us overcome our own obstacles, Luanne answered, “I went uphill and asked questions along the way.”

Luanne was born with retinitis pigmentosa, a genetic disease that results in eventual blindness.  One’s vision shrinks from the outside in. Two out of three of her siblings have the disease and are now completely blind. She has always had very poor night vision. In high school, Luanne began to feel the effects of the disease as her peripheral vision decreased.  By the age of 19, she was diagnosed as legally blind.  It didn’t keep her from continuing to compete against able-bodied athletes and winning her age-group in multiple 5Ks and triathlons. When she was 28, she rode a tandem bike across the U.S. with a below the knee amputee woman. In her 30’s she was a member of the U.S. Para-alpine-ski team and a world champion in four disciplines three years in a row. Now, at 56, Luanne is holding onto the speck in her left eye that allows her to still see…very little.

Luanne, a short distance runner, had never run over 13 miles at one time.  The three days of racing at an elevation above 9,000 feet included Day one: 20.8 miles, 2500 feet elevation gain, hot, sandy, rocky, gravel; Day two: 13.4 miles 3200 feet; Day three: 24.3 miles 2700 feet climbing.  Our bags were transferred to each new stop. Our tents were set up upon arrival at camp. Delicious and nutritious meals were provided for breakfast and dinner. Hot showers were even provided.  All we had to do was run. Easy, right?

When Luanne announced that she was doing the race, one of Luanne’s friends, not surprisingly, asked her, “Why are you doing this?”

To which she responded, “Because someone asked me.”

“Would you jump off a cliff if someone asked you?”

“If I had a good bungee, yes,” replied Luanne.

“Would you jump off a cliff if someone asked you?”

“If I had a good bungee, yes,” replied Luanne.

A bungee was just what I was.

A bungee was just what I was. There were three ways by which I guided Luanne.  For the wide flat dirt roads, she ran alongside of me holding one end of a nylon tether (the other end I held).  On rare stretches, she ran beside me following simply my vocal commands and sometimes loosely resting her hand on my arm. For the single track inclines and flats, she held on to a stretchy bungee-like cord that was looped through my camelback, allowing only a foot between us. During the steep descents and technical terrain, I took her arm and guided her. When the soil was very loose, she followed the shadow of my feet in front of her and my verbal cues.  By the end of the day, these cues became harder to time appropriately. A few times exhaustion beat me to the punch and before I could say “tree root” she’d tripped.

Blind runner Luanne Burker and her sighted partner, Amanda McCracken, on the TransRockies Run. Photo: Raven Eye Photography

Frequently participants passed us saying, “You two are so sweet,” or, “You are such an inspiration!” Just wait till you get in our way, we joked. We’ll invite you to a fast race and then we’ll see who’s passing who.  Both of us had to temper our competitive natures with patience as we navigated down loose gravel, around rocks and holes, and along steep drop-offs.

The “You’re so sweet” comments, while well intended, seemed condescending to both of us.  I grew frustrated when I noticed people engaging in conversation with me but not Luanne while she stood right next to me. But Luanne understood them.

“Sometimes your job as the blind person becomes making others feel comfortable. They see blindness as a vulnerable state of being. And in some ways it is. We have a very basic instinct to protect ourselves. So it’s not surprising blindness brings up fear in people. Not necessarily fear of the person, but a fear of the possibility of that becoming them. People often say I just don’t know what I would do, if that were me.”

“Sometimes your job as the blind person becomes making others feel comfortable.”

“Society similarly responds to the elderly in our culture; we push them out of sight because we’re afraid of our own death, our own vulnerability. I think, that is why people who are comfortable with themselves are comfortable with somebody who is blind or old. Because they know they could handle it.”

Those who were unnerved by the idea of a blind woman trekking the same trail wanted to help. They all seemed to have an idea for us. “Use this stick to help you with balance,” one suggested. Another thought we should try using the stick a different way. People genuinely wanted to be a part of our adventure.  And yet it was hard for anyone to have the same perspective unless they were in our shoes.

What was tough for a seeing person was not necessarily tough for a visually impaired person, and vice versa. Runners were impressed with how quickly we scooted up to Hope Pass (3,200 feet incline in 5 miles), but it was the steep and technical 8.5 mile and 3300 feet descent from the pass that was tough. There were long stretches of navigating around big rocks and areas where the water had washed away the soil, creating deep crevices. We were probably ahead of 100 people when we got to the top of Hope Pass, but by the time we finished, they had all passed.  However, it was on this difficult descent where we experienced the most lasting impressions during the trip: the aspen trees.

When Luanne was a little girl, her father took her and her three brothers hiking in the Rocky Mountains. Aspen trees visually trigger memories of those special trips with her now deceased father.  Much of our descent from Hope Pass wove its way along a creek and through the rustle of hundreds of Aspen trees. At certain moments the light would hit the still green Aspen leaves and chalky bark in such a way that Luanne could catch a glimpse. She wept when she told me that those Aspen trees were the image she surely would take away from our experience.

“I never realized how precious images in nature would become to me.”

Luanne is the professional artist. She has moved from painting to sculpture as her vision further disappears. So, it’s easy to understand why it mattered to stop along the trail to rest the giant columbine flowers in her hand for her to see through her pinhole. Luanne’s TransRockies trek was a visual collection of memories. A series of moments capturing and storing silhouette images like the skyline and the Georgia Okeefe-esque fence along our route. Like an old fashion camera, her vision is able to focus on whatever silhouette is in the light.

“Visual memories aren’t always what I thought they’d be. I never realized how precious images in nature would become to me.”

Luanne and I went on a journey that reshaped us both (in different ways). Our adventure helped redirect and redefine our sense of power and glory, really just reflections of the intimate, yet brief, encounters we had with beautiful people and nature along the gossamer route. We were two different people experiencing the same route in very different ways.  TransRockies was a gossamer web because it reminded us of the interconnectivity of all things. In my impatient-selfish moments, I remembered to connect to the real reason I was out there: Luanne (regardless of when or where we finished). Our team of two was a reminder for other participants to connect to the experience not the race. For Luanne, it was about connecting to nature in a way she might never again.

Top photo courtesy Raven Eye Photography. 

Profiles

Daredevil

This blind athlete loves being noticed.

Salmaan Choudhri goes big. If he’s at the pool, he’s doing backflips; if he’s skiing, he’s shooting the black diamond; and if he’s playing music, he’s strumming—wait for it—the harp.

The 24-year-old, who lives in Evanston, IL, was born with retinitis pigmentosa, which causes progressive vision degeneration of the retina. “I was born with perfect vision,” he says. “At three, I got my first glasses, and in high school I had to start using a cane.” He is legally blind, although life is easier on him now than he was as a youngster. “I basically would hide my cane in my backpack and not want to use it. I was only the only kid who used one. I was kind of picked on a lot and I was embarrassed of my disability.” He played on a YMCA basketball team, never letting his coaches know about his vision impairment, staying under the radar by running up and down the court, even making a few plays and shots. “The coach found out only because he ran into me in the parking lot and saw me with my cane,” says Salmaan. “He was shocked: I wish I could’ve seen his face.”

“I was born with perfect vision. At three, I got my first glasses, and in high school I had to start using a cane.”

Salmaan’s mother, a teacher originally from Pakistan, encouraged her son to try any activity that caught his fancy, from horseback riding to rock climbing to downhill skiing via the American Blindness Skiing Foundation. On trips to Alpine Valley in Wisconsin, sighted guides gave him verbal guides as he navigated the chairlift and the mountain: “’Chair coming in 3, 2, 1’: Then they helped guide you to sit down,” says Salmaan. “They call you commands from behind: ‘Looking good, looking good, left turn coming ahead.’ It’s constant communication: all I have to do is listen and ski.”

Salmaan loved the sport so much that he went on weekly trips, and within a year was on black diamond trails, addicted both to the to the speed and the attention he got.  “Because we wear these big orange bibs that say “Blind skier,” I’d get stopped and get a lot of compliments: ‘Wow, you’re blind and you could still go down the steep mountain,’” he says.

Salmaan in his “Blind Skier” bib.

“I like going fast,” might well be Salmaan’s motto. This also explains his love of ice hockey, which he picked up two years ago, wanting to add a new challenge and thrill to his long list of challenging thrills. Thanks to his experiences rollerblading and skateboarding he took naturally to the ice and enjoyed learning skills like skating on one leg, going backwards and perfecting a screeching hockey stop. Salmaan now skates for the Chicago Blackhawks Blind Hockey team, playing in international tournaments and honored as the team’s player of the month in early 2017. Blind hockey is fast paced like sighted hockey, but with a wider net and a larger, heavier puck filled with ball bearings to provide an audible presence (the puck’s weight also means the players don’t need to worry about objects flying at their face.) Another difference between hockey for the sighted and for the blind: no fighting. “It’s a little too dangerous,” Salmaan admits.

Not like Salmaan’s the physically fighting type. He channels his energies into proving, over and over again, that his impairment won’t stop him, although occasionally he gets frustrated by the thoughtless but well-meaning sighted. Not long ago, a woman shouted “It’s not rocket science!” at him while he waited for a revolving door to slow down at a busy train station. “I turned around and I showed my cane,” he says, adding. “Some people are ignorant.” Sometimes, too, people assume he can’t manage stairs and stick him in an elevator not realizing “it’s kind of hard sometimes for me to find the button. Sometimes there’s not Braille in the elevator so I’m stuck in a box.” It’s with these types of people that he most relishes telling stories about his time on the slopes or in the rink. “They almost have a mini heart attack. They’re like, ‘But you’re blind.”

If Salmaan’s battling anything, it’s for the education to get him on track to his dream job as a disability or human rights attorney. After getting straight A’s in high school, he says: “College kind of ruined me a little bit: I had to fight a lot for my accommodations.” At University of Illinois in Chicago, the school was unable to consistently provide him the large-print exams and assignments he required: “It would always be not enlarged the right way or upside down missing or with sections cut off,” he says. “I was really frustrated with that: I would have to storm into the office, 12 blocks from my dorm, and have them fix it.” He filed a few lawsuits with the school and ultimately transferred to Northern Illinois University, from where he graduated with degrees in sociology and anthropology. He tried to take the LSAT but the LSAC ultimately refused his application, citing his requests for what they saw as too many accommodations like large font, a live person reading and breaks to rest his eyes—accommodations he received when taking the ACT. “They wouldn’t even give me my money back,” he says.

Salmaan also suffers from anxiety: the sports help, but he can’t always get to a rink or to a mountain. “The two things that help the most are prayers and music,” says the practicing Muslim. While attending a recital in college he heard a harpist perform and thought: “I have to learn how to play it.’” With the help of a good teacher as well as Braille and light stickers he places on the strings, he has become proficient enough to take his door-sized, ten pound carbon fiber harp to play at open mics around Chicago.

When he’s not playing hockey or the harp, Salmaan enjoys horse-riding.

Salmaan intends to start law school after racking up some time in the workforce. He’s currently spending time with kids at Youth Opportunity United, which provides tutoring and counseling to Evanston families. He enjoys working with kids and showing off for them on field trips: “We went to a water park and I was doing flips off the high dive. All the kids were like ‘He’s fun! How can he do that?” He likes to think that he kids gain something by watching the way his vision impairment forces him to adapt to his surroundings and situations. “It’s almost like giving kids more knowledge by [my] being there,” he says.

One has to wonder whether Salmaan would be who he is, the way he attacks challenges, if he could see. “I might not,” he admits s. “My vision impairment shaped me in a very different way, and the activities I played [did too.]” Before he discovered his prowess for sports, he was the kid who was so shy and embarrassed about being blind that he hid it from other people. “The old me would be like, ‘I don’t think I can talk to you right now.’ I felt like everybody looked at me differently and just thought by looking at me, that if I can’t see, I can’t do anything.”

As we talked, the shy Salmaan, who initially gave short and quiet answers, relaxed into the confident Salmaan, who volunteered more favorite examples of his adventures, punctuated by a modest but proud laugh that grew more frequent throughout our conversation. He remembers another favorite adventure: “The funniest one was when we went caving, I was the only blind person on that trip. It was really dark — even the headlights weren’t working, so dark inside. I was climbing and going faster than everybody else, just by feeling around.”

The Good Fight

The Tour Guide Making Ghana Accessible To People With Disabilities

Entrepreneur Joseph Asameni Obiri says that by making Ghana more accessible to people with disabilities, he can help make the entire country richer and friendlier.

Startups are a tricky business anywhere in the world. The life of a founder means high-stress, self-financing and countless long hours in the quest to fill a gap in the market.

No one knows this better than Joseph Asameni Obiri. Hailing from Accra, the capital city of Ghana, Obiri drained his bank account, turned his bedroom into an office, and has faced countless setbacks, but his faith has never wavered in his mission: to make his beautiful country accessible to people with disabilities.

Obiri launched his startup company, Lionize Tourism Consult, in December, 2016. His company is focused on including persons with disabilities (PWD) in Ghana’s tourism: both those already here and those who want to visit.

Joseph Asameni Obiri with a bus full of happy customers.

His first event offered a free tour to students from a hearing and visually impaired school in Ghana. He completely self-funded the tour, taking the pupils around Accra. Obiri rented a bus to take the children and teens to visit a library, memorial park and then a shopping mall. The kids, who usually had limited access to the sights of the city, loved it. By the end of the tour, they were literally singing his praises from the back of the bus.

The experience only reaffirmed Obiri’s belief that Ghana needs to be more open to people with accessibility needs. A ten-year veteran of the Ghanaian tourism industry, Obiri’s business was born from his frustration that people with disabilities were not coming to his safe and stable West African country. More than that, even native Ghanaians with disabilities had often not seen much of their own backyard.

To a savvy entrepreneur, it seemed like an opportunity ripe for the picking. “People with disabilities want to travel, if you just give them the opportunity, ” Obiri says.

Tourism catering to people with disabilities has the potential to be big business in Ghana: a 2015 report from the  Open Doors Organization suggests that in America alone, more than 26 million disabled adults traveled for pleasure or business, spending more than $17.3 billion annually.

After his first free tour, which proved his concept, Obir branched out. He took pupils from a school catering to Ghanaians with intellectual disabilities to one of Accra’s top hotels and a botanical garden. The tour was another success; one of the older participants even took Obiri aside and said he wanted to intern at the hotel they visited.  “He said he doesn’t care about being paid… so long as the people around him see he is doing something with his life,” Obiri remembers.

In April, Obiri did a tour to Ghana’s Eastern Region for a paragliding festival, bringing along about 30 visually impaired adults through the Ghana Blind Union, a local blindness advocacy group. There, he was even allowed to take one of his customers paragliding, even though the organizers originally said it was too dangerous. Local media covered the event: it was the first time a visually-impaired person had ever gone paragliding in Ghana.

Obiri believes that by bringing more people with disabilities into his country, accessible infrastructure as a whole within his country will improve.

To date, Obiri’s paragliding adventure was his last tour. So far, he has paid for all of his trips out of his own pocket, he is now looking for funding. In the meantime, Obiri is trying to sell tour packages to people with disabilities who live outside of Ghana, using his successful free tours to prove there’s plenty of opportunities for travelers with accessibility needs to travel within his beautiful country. His ultimate goal is to help fund free tours for Ghanaians with special needs from the money he charges foreigners.

“The real market is out there,” says Obiri. “We have the evidence.”

Profiles

Pic Picot, New Zealand’s Blind Peanut Butter Poet

With the help of quality ingredients and his service dog Fido, the founder of Pic's Really Good Peanut Butter hasn't let macular degeneration get in the way of establishing a food empire.

When Bruce “Pic” Picot started making peanut butter, he was enrolled in a creative writing course and spending most of his time making poetry.

Eventually, the two would combine in a fifteen million dollar success story he never expected to happen.

“I just wanted an excuse to have a stall at the Friday farmer’s market, and to maybe make a bit of pocket money,” he says.

That pocket money went further than he ever imagined.

In the beginning, he did the peanut crunching himself. Now, he’s got a whole team who do the daily grind, which is useful, because Pic has macular degeneration. He’s going blind.

“Both my parents are blind; it runs in the family. I knew this was going to happen, though I’ve been assured I’ll never lose my vision completely.”

Both my parents are blind; it runs in the family. I knew this was going to happen…

Pic developed the condition younger than most, in his mid twenties. Now in his sixties, he can’t see much in the middle, but still has “pretty good” peripheral vision. He has a service dog, Fido, who helps him get around.

Fido, a black Labrador, is provided through the New Zealand Blind Foundation. He’s travelled with Pic across the country, and on a trans-Tasman flight to Australia. Unfortunately, he is restricted from going much further because of international quarantine and customs laws.

Fido, Pic Picot’s loyal service dog.. Photo: Daniel Allen

But for the most part, the two are inseparable. Pic appreciates Fido’s assistance and friendship so much, he is sponsoring the training of a service dog for someone else in need. The puppy is to be called Peanut.

“I’m really lucky to have him, and I want that for others,” says Pic. “He’s such a good dog, he’s so trustworthy. He’s a lovely companion to have, and he’s a great excuse to talk to people.”

Pic is a people person through and through. He says the only problem with travelling with Fido is that he gets an empty seat next to him– meaning he misses out on meeting a fellow passenger

“Usually I’d have someone to chat to, which I love, that’s the reason I’m traveling most of the time. Finding people to chat to.”

He does more than that. With the team taking care of the business back home, Pic is free to hop about the world, selling his peanut butter to anyone who’ll listen to his story and have a taste. And plenty have.

“Everybody eats, so being a food maker gives me an excuse to talk to anybody. They eat the peanut butter and I make it, so I’m a part of people’s lives.”

Everybody eats, so being a food maker gives me an excuse to talk to anybody.

Pic, who has never worked for anyone else and spent his life starting and running businesses, got the idea for the product when he discovered that most manufacturers were filling their spread with sugar. He hated both the practice and the taste, so he bought a second-hand nut grinder for two hundred dollars, and started making his own butter in his garage.

“Both my parents are blind… I knew it was going to happen.” Photo: Daniel Allen

That was in 2007. Now, the factory in Nelson, New Zealand produces fifteen million dollars’ worth of products a year, including peanut, almond, and cashew butters. They all contain the same unique selling point – no added sugar. The factory itself is pretty special – it has a large mural of Fido on one wall.

Pic’s had a hard time handing over the reins. He loves the machinery and software, but it’s not practical for him to be on the factory floor all the time. So he spends his days spreading the word, and it’s working. The spread is now sold in twelve countries, including New Zealand, Australia, Southeast Asia, Japan, China, the UK, and in 200 outlets in California.

And he still gets to make the most of new technology.

“It’s a hell of a good time to be blind!” he says. “I went to Israel and I got a camera that fits on your glasses. It recognises faces and converts text to speech. Amazing. And we’re only going to get more and more of that sort of thing.”

That can be helpful, because sometimes other people are not.

It’s a hell of a good time to be blind!

“I do get people getting cross with me, when they don’t realize I’m not sighted. I might accidentally skip a queue or something, and people will say things. Then I say ‘Sorry, I’m a bit blind,’ and they might go ‘Yeah, me too,’ not realizing what I actually mean!”

Meanwhile, he’s never quite given up that love of writing, and each jar of Pic’s contains a little surprise: a poem on the inside of the label.

Pic and Fido. Photo: Daniel Allen

“They’re printed under the name Bill Smith,” he says. “Bill’s a real person – he’s 103 now. But actually the poems are by me, Cliff Fell, who was my tutor when I studied creative writing, and a woman named Anne French.”

Pic wants to get started on an autobiography next. With his reduced sight, writing is one of the things he finds challenging. “I go to copy paste something and I can’t see if I’ve done the right bit, I move things around and then I’m not sure what’s left. It can take a whole day to write half a page.”

But the frustration doesn’t get him down for long.

I like who I am… and this–the blindness–is part of me.

“I like who I am,” he says. “And this – the blindness – is part of me.”

As for the peanut butter business, it continues to grow in leaps and bounds. It looks a little bit like he’s plotting world domination.

“Maybe,” he laughs. “Yes. I want Pic’s to be the best loved peanut butter in the world.”

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.”

Essays

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.