Disability Vision & Hearing Loss

The Treasure Hunters: Geocaching When You’re Disabled

Technology and a dose of true grit are helping these modern-day explorers take part in the global treasure hunt called geocaching.

Ed Manley gazed up the mountain. He could see the peak, where the treasure was stashed. And boy, did he want that treasure. But as a one-legged man with weight issues, with crutches and a body that complained whenever he moved, getting up that hill was going to be difficult.

A small container with a plastic-wrapped notebook doesn’t sound like much in the way of treasure. But for geocachers like Ed Manley, who live for the hunt, these caches–hidden under rocks, stashed in hollowed-out tree trunks or stuck to the metal base of a lamp post—are more valuable than pirate gold.

In geocaching, a small ‘cache’ of objects–containing a logbook and several small prizes wrapped in a waterproof container–is hidden somewhere in the real world. The GPS coordinates of the cache are then posted online for other geocachers to find, along with hints and clues on how to locate it when you’re in the area. Those who find the cache record their adventures in the logbook, swap out any of the items they want for prizes of similar value, and return the cache where they found it for other people to try to locate.

Because geocaches are often placed in remote or challenging places, it doesn’t sound like a hobby that would play well with disability or chronic illness. But the reality is different: for people like Ed Manley, geocaching can provide a literal lifeline.

A man with a beard in a powered wheelchair going geocaching with his daughter.

Ed Manley geocaching with his seven-year-old daughter.

From Suicide To Geocaching

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

In 2003, he fell down some stairs at work, breaking his neck. Manley already had health issues due to a car crash in 1979 that had hospitalized him for two years, but he accident spelled the end of his working life, and the beginning of a depression.

After years in hospital and 42 surgeries, his mobility was at an all-time low, and he’d developed an addiction to painkillers.

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

“I didn’t feel like I was of benefit to my family,” Manley remembers. ” I had become addicted and it nailed me to the couch, I couldn’t do nothing, I was useless.”

Based in Birmingham, Alabama, Manley decided to end his life on his boat.  “They’d find my boat floating, and that would be it.”

But as he was getting ready, the mailman dropped by. He had a package for Manley: a GPS device.

“I had ordered it using cigarette coupons and a few dollars, and I’d forgotten about it. I didn’t know a thing about a GPS.”

Interest piqued, Manley went into the house and sat down at his computer. One of the first hits  geocaching.com, where he discovered there was a geocache nearby. Curious, Manley followed the co-ordinates to a hole in the fence at his former old high school.

“I thought that’s pretty cool, and I decided not to kill myself.”

The Healing Power Of Hunting

The GPS device changed everything, Manley says. Although he was a long way from what he considered “healthy,” geocaching gave him something to do. Getting out of the house made him feel better.

A one-legged man on crutches wearing camo and hunting for geocaches in the woods.

Ed Manley going geocache hunting on his crutches back in the 2000s.

“It gave me some hope of recovery that I could have a life,” Manley explains.

Over the following year he hunted down increasingly difficult caches, building his emotional and physical health. Geocaching fed a strength Manley didn’t know he had. “I’d put my crutches down and crawl through mud on my butt.” He threw away the painkillers, and began to focus on a goal.

“I had one cache in mind,” Manley recalls. “It was on the top of the mountain. For a one-legged fat guy to get to the top of the mountain seemed like an impossibility. But I said if I can get up the top of that mountain and find that cache I will know I have recovered.”

It took him a year to build up the stamina to scale the mountain. “But I got up there and got that cache. I got up there and cried like a baby. I’d escaped the drugs, the depression, the feeling of uselessness.

“Geocaching saved my life.”

“Geocaching saved my life.”

Now 63, Manley is still geocaching. He mostly gets about in a powered wheelchair, which means mountains are off the cards.

“I don’t go after the hard ones as much anymore,” he says. “Over 10 years I proved I could get any cache. I have found caches in four countries and throughout 29 states. It’s been a blessing. It’s kept me sane.”

Manley still finds around two caches a day, gradually adding to the thousands of finds he’s racked up since that first find. And he has a new companion, his seven-year-old daughter, the child he has with the second wife he met through his hobby.

“My daughter loves it more than I do: she insists we go out, even in the snow.”

Geocaching When You’re Blind

For Day Al-Mohamed, geocaching is like hunting pirate’s treasure. “You have a secret map that takes you to a treasure. Especially some of the great big caches you find, like a big ammo box that someone has filled with things.”

A young, attractive Muslim-American woman with her guide dog.

Day Al-Mohamed’s visual impairment just makes her more determine to find elusive geocaches.

The public servant, who works as a senior advisor the US Department of Labor in Washington DC, began geocaching with friends. “They had just started and were super excited about it.” The excitement was contagious, and Al-Mohamed and her wife began hunting down caches on their own.

Visually impaired since birth, Al-Mohamed can make out shapes, and colors if she gets up close. But by pairing her iPhone’s voiceover function with the geocaching app, when she hunts down caches she’s able to take the lead with navigation.

With a mind that’s given to problem-solving, Al-Mohamed can tackle the most cryptic of clues. In fact, these often give her an edge.

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

While most cachers use the visual cues on the map, Al-Mohamed uses the compass in list mode, which guides her to the cache, inch by inch. “It’s kind of like getting hot or cold: Nine feet, eight, seven – okay we’re going well.”

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

Cache found, she lets her companion take over.

“When it comes to sticking hands into strange places I’m going to let somebody else do that.”

Although sometimes, there’s no avoiding the “ick” factor.

“There was one that someone had put on the side of a bike trail. It was a tree with a hollowed out base. My wife put her hand in and she let out a huge scream. And she said, ‘you stick your hand in there!’ I reached my hand in there and let out a scream, and pulled out a giant spider. Somebody had got a giant rubber spider, opened the abdomen in it and put a silver cylinder in there with the cache.”

Being visually impaired, she has to tread more carefully than others over the rough terrain geocachers often traverse. But working in the city has its upsides, and that’s the number of easy-picking caches right on her doorstep, which, due to her work schedule are often hunted at night, with a flashlight.

“In the city it’s more … how you get to it without someone else seeing you,” she says. “Secrecy becomes the more important thing almost than getting to it.”

Cheryl Rankine with members of the Australian Deaf Geocaching group.

The Universal Language of Geocaching

Cheryl Rankine has spent the last nine years geocaching her way around Australia, racking up almost 11,000 finds, or around three a day. Her hobby has sent her across four Australian states, and she regularly meets up with other deaf geocachers for events around the country.

Part of the 30-strong Australian group Deaf Geocaching, Rankine has ready-made friends in all corners of the country. But the language of geocaching is universal, she says, and when she comes across other geocachers she’ll pull out a pen and paper, or even mime to reach common ground.

Not one to shy away from a challenge, Rankine’s dedication to finding caches sees her scrambling through the Australian bush. Despite encountering snakes, and one instance where she was attacked by wasps, she’s determined to get to the most formidable caches, even if it involves climbing a tree.

“I always have a ladder in my car,” she says. “But I need more practice using ropes in trees.”

Rankine relies on visual clues and maps to navigate.

“Geocaching gives me an escape. I will never give up

“Walking in the bush, I keep my eyes open to watch everywhere. I can’t hear background [noise] but I manage to watch everywhere all the time. We even cache at night, with a good strong torch so we can see.”

However, with caching you never quite know what you’ll get, she says. Along with a ladder, she never leaves home without a walking stick, a magnet for accessing out-of-reach small metal boxes, pliers to open nuts, and a mirror. And even with all that prep, she still gets caught out.

“Sometimes, the clue could be song lyrics, and I’ll ask my daughter to listen to the song for me.”

She also contacts the cache owner if she needs a help, or calls the National Relay Service, an interpreting line for the deaf community.

The tenacious woman says she’ll geocache as long as possible.

“If I have many things on my plate at home, geocaching gives me an escape. I will never give up.”


Creative Commons Photo by Flickr user DM.

Disability Vision & Hearing Loss

Bird Box When You’re Blind

A better #birdboxchallenge would help sighted people understand the realities of visual impairment better.

It’s so sudden, I leap out of my skin.

I’m at the library, navigating to my favorite table with my Victor Reader Stream in hand. I find my chair, fold my cane, and start to pull my seat out, when all of a sudden, the chair moves on its own. I don’t even have time to think about what’s happening: I just lunge after where I think the chair should be. But in trying to prevent myself from falling, I crash into someone. .

“Oh my God,  I’m so sorry!” a masculine voice says. “Are you okay?”

We introduce ourselves. His name is Ryan. It turns out the chair broke. He pulls out another chair for me and helps me find it. He seems nice, maybe the future husband of my dreams. Then he says:

“I was just so shocked,” he blurts.

“Shocked about what?” I ask.

“I mean, you, being out, here. Navigating on your own, and stuff. That’s the scariest thing ever.”

He means because I’m blind. I’m silent.

“Navigating on your own, and stuff. That’s the scariest thing ever.”

He means because I’m blind.

“I don’t know if you’ve ever seen this movie called Bird Box on Netflix,” he says, then stammers awkwardly. “Not ‘seen’, I mean, heard…“

“I’ve seen it.” I reply.

“I just can’t imagine how you do it every day!” he gushes. I wish I could roll my eyes, but I can’t, so I let him finish. “I’ve been doing this challenge.“

“You mean the Bird Box Challenge?” I ask.

In the Bird Box Challenge, participants wear blindfolds and try to do everyday activities blind: iron their clothes, wash the dishes, cook dinner, drive their car. The challenge is named after the Netflix horror film in which the last remnants of humanity need to get around the world blindfolded so as not to be driven mad by sanity-shattering monsters. Frankly, the entire meme is representative of my very worst opinions about sighted people: that they are stupid about blindness, and so self-involved they can’t even spend twenty-seconds to Google how blind people get around the world.

“Yeah,” Ryan says. “After doing the challenge… I mean, I’m just so, like, whoa!”

Okay. So Ryan thinks he has some first-hand experience with blindness. So I decide to engage with him on it.

People put a blindfold on for twenty minutes, and think they suddenly have insight into how ‘hard’ life is when you’re blind.

“So what cane techniques did you learn?” I ask him. “Two-point touch? Shoreline? What about NVDA? Did you find that challenging?” I ask.

In response to this and a few other baseline questions about getting around the world when he’s blind, Ryan is silent.

And that’s my issue, in a nutshell, with the Bird Box Challenge. People put a blindfold on for twenty minutes, and think they suddenly have insight into how ‘hard’ life is when you’re blind. But they’re not going beyond that, and using the Challenge as a way to better understand the experience of blindness, or what blind people actually go through. They don’t learn about smart canes, or braille, or screen readers: they just stumble around in the dark for twenty minutes, and then make like they have some profound new understanding of what unique and tragic heroes we blind people are.

People like Ryan haven’t learned anything, and that frustrates me, because a better #birdboxchallenge could really help elevate the dialog around blind people, and make the world more accessible to the blind. For example, it could involve using a screen reader while blindfolded, or collaborating with a blind friend to take cane walking lessons.

A better #birdboxchallenge could really help elevate the dialog around blind people, and make the world more accessible to the blind.

I’d love it if a sighted person came up to me and said: “I tried using VoiceOver on my iPhone for a month and now have a better understanding of how you do things.” I’d love it if a sighted person used the Bird Box Challenge to watch an audio described movie blindfolded. I’d love it if a sighted person browsed the web with NVDA for a week, if only to grasp how severe my challenge is.

I don’t see anybody doing that, though. I wish I did. Instead, I see ignorant sighted people getting a thrill out of being in danger… and putting other people in danger in the process.

Chronic Illness Disability Mental Health The Good Fight Vision & Hearing Loss

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.

Disability Essays Vision & Hearing Loss

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.

Disability Q&As Vision & Hearing Loss

This Deaf Medical Student Is Using Microsoft’s HoloLens To Fix A Huge Healthcare Problem

Not enough doctors know American Sign Language to treat deaf patients. That's a problem Ian DeAndrea-Lazarus, who is deaf himself, thinks augmented reality can help solve.

Years ago, Ian DeAndrea-Lazarus, a PhD student at the University of Rochester School of Medicine, was in a car accident in Washington D.C. Another driver had sped through a red light, colliding with his car and sending it spinning. DeAndrea-Lazarus suffered whiplash. When emergency personnel arrived he was put in a stretcher and transported to a nearby hospital. But DeAndrea-Lazarus is deaf: having his neck immobilized eliminated his ability to communicate. “It was incredibly frustrating,” he recalls. “I had to tell the EMTs to come within my field of view if they wanted to talk to me.” When he arrived at the hospital, it took hours for an available American Sign Language (ASL) interpreter to arrive. “This is a common problem for deaf people everywhere,” he laments.

It was frustrating healthcare experiences such as this that pushed DeAndrea-Lazarus, 30, towards medicine. He wanted to make the process better for people like him. Historically, the medical system has not been good for the deaf, resulting in misdiagnoses, poorer health outcomes, and healthcare avoidance. Among non-English speakers, the deaf are at the greatest risk of being misunderstood by healthcare providers. And it is not just from issues with sound. Physicians rely on written En­glish, even though studies show that the deaf community have, on average, lower literacy rates than the hearing; the average deaf high school senior reads between the third and fourth grade levels. Moreover, physicians often view deaf patients strictly in terms of their deafness, looking to “fix the ear,” says DeAndrea-Lazarus, even though “many deaf people don’t view themselves as disabled. They consider themselves to be a part of a linguistic minority. It is the environment that is disabling,” he says.

Historically, the medical system has not been good for the deaf, resulting in misdiagnoses, poorer health outcomes, and healthcare avoidance

Slowly, this is changing. Certainly it has in Rochester, which has the highest per capita concentration of deaf Americans. There, DeAndrea-Lazarus helps run an annual role-reversal program called Deaf Strong Hospital, where hearing students take on the role of patients in a hospital with only ASL-communicating doctors. “Many of my classmates have learned ASL as a result and have reported having positive interactions with deaf patients during their clinical rotations,” says DeAndrea-Lazarus of the program’s impact.

Technology is also having a profound effect on deaf-hearing communication. Currently, DeAndrea-Lazarus is working on a potentially revolutionizing technology: an app that pairs with Microsoft HoloLens, an augmented reality visor, that translates spoken English into text onto the eyeglasses. When released, it will allow deaf people to understand spoken language almost seamlessly, in real time and in the real world. We reached out to hear more.

 

A group of deaf medical advocates gather for the Deaf Strong Hospital

A meeting of Deaf Strong Hospital, a program DeAndra-Lazarus helps run where hearing students take on the role of patients in a hospital with only ASL-communicating doctors.

Why did you get into medicine?

The deaf community is vastly underrepresented in medicine and I saw this as an opportunity to show the world that deaf people, given the right tools, are capable of doing anything they set their mind to. I have also had adverse experiences dealing with healthcare providers who were unfamiliar with the needs of deaf people. I’ve been told that I needed to bring or pay for my own interpreter, for instance, which is a violation of the Americans with Disabilities Act.

The deaf community is vastly underrepresented in medicine and I saw this as an opportunity to show the world that deaf people, given the right tools, are capable of doing anything they set their mind to.

How beneficial is the Deaf Strong Hospital program for medical students?

Deaf Strong Hospital is an opportunity to teach first-year medical students what it is like to experience communication barriers firsthand. All of the students will experience the consequences of misunderstandings and ineffective communication such as being referred to the psychiatrist for an unspecified mental illness, which is something that has historically happened to many deaf people. The students are also given an hour long lecture by me on deaf culture and disparities in healthcare.

I also give examples of “deaf utopias” around the world such as Martha’s Vineyard where there was a high prevalence of hereditary deafness that resulted in the entire community learning sign language, regardless of them being deaf or hearing. People living on that island were no longer disabled by the environment as there was no communication barrier between the deaf and hearing people. I had that experience at Gallaudet, the only deaf university in the world, where I often forgot that I was deaf as everyone around me, deaf or hearing, used ASL to communicate.

A black woman with short hair wearing a Microsoft Hololens augmented-reality headset,

Microsoft’s augmented-reality HoloLens headset could be the key to one day allowing deaf patients to communicate with any doctor without an interpreter, says DeAndrea-Lazarus.

The reaction from the medical students has been overwhelmingly positive. This is also part of why medical school has not been as challenging as I thought it would be. This program should definitely be implemented in every medical school curriculum. Rochester is not the only city with a large deaf population. There are other cities with a high prevalence of deaf people such as Austin, DC, Fremont and Pittsburgh. It is my hope that one day the world will be as accessible to every deaf person as Martha’s Vineyard once was.

How did your idea for the app come about?

As a child, I enjoyed science fiction films such as Minority Report. I imagined a world where we could see text translations of speech occurring around us. The advent of wearable glasses took us closer to making that dream become a reality. A few years ago I obtained Google Glass with funding from the graduate program here and developed a system where I could see real-time captions appearing in my field of view. The captions were being produced by a professional captioner who was listening to an audio feed. The next step was to utilize speech-to-text software to cut out the middleman. Microsoft created the HoloLens, which had voice recognition built-in so I obtained one and developed a simple app that tapped into this ability. The speech-to-text software is pretty good but not nearly as accurate as it needs to be to be used in environments such as medical school where terminology is highly specialized.

Microsoft created the HoloLens, which had voice recognition built-in so I obtained one and developed a simple app that tapped into this ability.

What sorts of responses have you had?

I exhibited my app during a talk I gave during the Association of Medical Professionals with Hearing Losses (AMPHL) conference here in Rochester in 2017 and the reaction was very positive. There was a lot of excitement about the app’s potential to eliminate communication barriers, especially in medicine. However, the HoloLens is somewhat bulky and intrusive so some feel that it presents a physical barrier between the wearer and the speaker. With Moore’s Law in mind, the hardware will become smaller and the computing power will be greater in no time.

A deaf man in glasses wearing a blue shirt has a conversation in sign language with an older brunette in a purple top.

A big problem in hospitals is there aren’t enough interpreters or doctors who understand sign language to communicate with deaf patients.

Do you have any other tech ideas in this realm?

My vision for the future is to tap into the brain’s existing language foundation and cut out the middleman again, which is the wearable device in this case. I imagine a world where we can communicate directly with each other by sending pulses of activity in our brain’s language regions to each other. This would be ideal as this would tap into anyone’s natural first language, instead of mandating that every deaf child learn a spoken language that is not fully accessible to them. Deaf children would be able to acquire a language that is fully accessible to them, visually, and communicate in this language to someone else who may not know this language and still understand them.

If you really think about it, the ear is also a middleman, receiving acoustic signals from the environment and sending it to the brain via electrical pulses. Why don’t we skip the ear and go to the source: the brain? Our brains do not really care whether we receive language through the ears or the eyes. The same pathways are activated in the brain.

My vision for the future is to tap into the brain’s existing language foundation and cut out the middleman agai

What are some other ways in which tech is improving things for deaf people?

There is a ton of technology in general that has been helpful for the deaf community.Hearing aids and cochlear implants give us access to a certain amount of sound. In the United States and now Canada, videophones have given us the ability to make phone calls, whether it is to a deaf person or a hearing person, via Video Relay Services. We are able to use this service on our smartphones via several apps such as Sorenson VRS, Convo Relay, Purple VRS and others. I’ve also found my Apple Watch to be very useful as an alarm clock to help me wake up in the morning (no more relying on bulky, vibrating alarm clocks!). My Ring doorbell communicates with my Philips Hue lightbulbs to let me know when someone is at the door. My Nest Protect sends me a notification and turns my Philips Hue lightbulbs red when there is too much smoke in the kitchen.

My wife, who is also deaf, and I have a three-month old son and we love our Lollipop baby camera, which sends notifications to our iPhones and my Apple Watch whenever my son is crying or moving in his crib. Technology has truly been a friend of the deaf community even though it gives us a hard time sometimes. I think we are moving closer to connecting the entire world, deaf or hearing, as technology advances.

Q&As Vision & Hearing Loss

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.

 

Disability Essays Instagram Vision & Hearing Loss

Falling Back In Love With Music After Deafness

40 years after sudden hearing loss seemingly ended my career as a pop music sensation, I finally learned to embrace my deafness, and become a musician again.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf. Music, as the experts now tell us, is essential to brain health. We’ve always known it filled the soul and senses, transporting us through all the years of our life, good years and bad.

But what if, after a life of composing, singing and playing music, you can no longer hear it or hear it clearly as you once did? What happens to the brain, to your heart and soul—and to you—without it?

At age 29 in my left ear, and then again at 31 in my right, I became deaf-with a small “d.” That little “d” also means “hard of hearing,” “hearing impaired,” “hearing challenged,” “adult onset deafened,” “adult late deafened,” and other sobriquets. I wear a hearing aid in one ear and have no hearing in the other.

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career…

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career that ended when deafness arrived. Starting in 1973 as a 24-year old, I recorded an album for a small record label (Evolution), watched as two songs made it to the Top 100 on the American pop charts, while unbeknownst to me at that time, another song became a #1 hit in Brazil. I was signed to CBS/Epic Records in 1976, and spent the next few years writing and singing national advertising jingles – including a parade theme for Disney called “I’m Walking Right Down the Middle of Main Street USA” which remains today, a Disney staple.

All that and what might have been came crashing down in 1981. Not only could I suddenly not hear as loudly as I once did, but what hearing I had left came with tonal distortion and the constant drone of low and high-pitched tinnitus.

Hello deafness, my new friend. So, what do I do now? I pondered. More importantly, who am I now? My whole identity–that of a socially gregarious man and a successful composer, singer, musician and recording artist—was wrapped up in my ability to hear, and now my hearing had been compromised. I had no idea what to do, no guides to assist me. But I knew I would have to try to adapt myself to this new life without music, and the identity music had given me.

Sudden deafness is tragic and soul-crushing. The inability to communicate “normally” changed my life from one of confident engagement to a life in the shadows. Deafness hindered my simplest interactions and made day-to-day life a maze of compounding difficulties. And it hampered my desire to communicate with others, especially when they were impatient or indifferent to what I was going through.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.  Often called the “invisible disability.” I was happy to keep it that way for as long as I could. I would only admit to being deaf when there was is a “failure to communicate” (often on my part) and I could keep it hidden no longer. I took pains to avoid being grouped with the really, really Deaf, with a capital “D.”   Surely, I was not one of them, and anyway, I didn’t need a support group.

But deafness changed who I was. More than just the hearing aid I wore, it changed the way I lived my life. I avoided loud places, turned down lots of invitations to do fun things, and isolated myself by avoiding people who didn’t know of my “affliction.” And when I did get together with people, I became loud and argumentative, talking over others because that way I didn’t have to listen.

As for music? I rarely ever listened to it anymore. I would sometimes sing, but I knew there was no connection between my singing and the correct pitch of a note or phrase. I was resigned to never being a musician again.

I was resigned to never being a musician again.

Yes, I had jobs, relationships, even married. Yet even within those circumstances my discomfort and awkwardness never really left me. Those feelings only really went away when I hid from others, or went on the road for my job, but being alone much of the time eventually brought me to isolation and despair.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

It was a conspiracy of different events that inspired me to return to music. In 2008, a writer from the Midwest contacted me after finding my album in a remainders bin in a music store and asked me why I never did another. Intrigued, he did an interview with me and wrote a story for his music blog. That story unearthed fans of 30+ years from around the world that I never knew existed. I vowed then to at very least put my first album onto a CD, but I never believed that making music again was in the cards.

But in 2009, I got my first digital hearing aid which allowed me to hear a much broader range of tones and I realized that I might be able to hear what I needed to hear to get back to music making. In 2010, a fan of many years visited me with a wonderful story as to how he had grown up with my music as a lad in South Africa where his Dad ran radio stations. His encouragement played a significant part in moving me forward. Around the same time, my wife passed away at a young age and her death impressed upon me the need to pursue my passion without delay if I ever hoped to give music a try again.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

Lots had changed since I had first become deaf. An auditory trainer brought me up to date on new brain research that indicated that even the small amount of residual hearing I had left might give me enough of a thread to improve my speech comprehension. That would not only help me with my isolation by allowing me to spend more time with others… it had the tantalizing possibility of improving my musical hearing through listening exercises.

Meanwhile, I discovered that hearing aid technology had expanded beyond speech, and now allowed me to hear musical tones I hadn’t heard for years. Galvanized, I worked with a vocal coach to recover my voice, and work breathing techniques and vocal stamina. Phonak, my hearing aid company, not only helped me to launch a Kickstarter campaign to return to music, but also enlisted me to write articles for their blog, Hearing Like Me, about my life with hearing loss. Over the next three years, I wrote more than 35 blog articles and responded to questions and comments not only about music and hearing loss, but also about how to negotiate a life with serious hearing challenges.

This was the “Aha” moment that I believe ultimately saved my life.  For most of my adult life, my hearing loss seemed like a meaningless personal tragedy. I was never able to compensate for it professionally, or to find peace with my new identity as a deaf person. But now that I was connecting to others about my experience through writing, I suddenly found myself coming to peace with who I now was, and the strength to start rebuilding my life in earnest. I now had an international audience of people like me who had endured many of the same things that I had and with whom I could communicate and perhaps even inspire. After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Eventually, I attended my first ever hearing loss community meeting and joined the Association of Adult Musicians with Hearing Loss (AAMHL). I was mortified to learn what I had been missing all these years: peers and new friends who coaxed me out of the shadows, and helped me see that there was more to life after hearing loss.

After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Moving beyond my own deafness reinforced my desire to return to music. While my audiogram has not changed in more than 40 years, I now see that it reveals more than just the defects in my hearing; it also allows me to see what hearing still remains, and target it with new compositions. After two years of training and endless practice, I have returned to performing live. These performances aren’t perfect, of course, but I simply call them “works in progress.” I have even gone back into the studio to record new music, and I’m now planning a busy year including a trip to Brazil to perform for fans who made one of my original compositions a #1 song there in 1974.

Stu Nunnery today, performing in St. Louis.

I could never have imagined that my hearing loss and the tragic narrative that grew out of it would become my redemption; that in rebuilding my connections to music and to my community of peers, I would rediscover joy and my sense of self. I may never regain my hearing, but by finally embracing my abilities in whatever forms they might take, I have finally found peace.

Beethoven is reputed to have said that “playing a wrong note is nothing – but playing without passion is unforgivable.” And famed trumpeter Miles Davis once said that “if you play a wrong note, continue – It’s the next note that counts.”

Whatever your challenges, find the notes to your own song and sing them with passion. They’re perfect just the way you make them.

Disability Essays Vision & Hearing Loss

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. 

Disability Profiles Vision & Hearing Loss

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.”

Disability Profiles Rare Diseases Vision & Hearing Loss

A Viral Campaign To Bring Disability To The Toy Aisle

Toy Like Me is putting pressure on the big brands to make their toys as diverse as kids are.

Watching television one day as a child, Rebecca Atkinson saw something that made her sit up straight with excitement. Like many British children, she loved the television show Blue Peter and watched it religiously. But today, she noticed something different on her favorite show: one of the presenters had a hearing aid, just like hers.

“I excitedly called my mum in to tell her that there was somebody like me on TV. I thought, if she’s got a hearing aid, I can be like her when I grow up, because kids want to be on TV like their idols.”

Rebecca’s excitement was dashed when her mum explained it wasn’t a hearing aid, but a radio piece in the presenter’s ear. It was disappointing, but not surprising. Because it wasn’t just television, it was everywhere: there just weren’t children like her. It wasn’t until adulthood that she was able to put the sense of isolation she felt into words, and realize that she’d been looking to see herself reflected back by the wider world.

“Those memories were me looking for some kind of recognition of my experience in the world around me, and it just wasn’t there.”

Rebecca Atkinson, who has Usher’s Syndrome, started Toy Like Me to bring diversity to the toy aisle

Later, a career in journalism and children’s television further confirmed Rebecca’s conviction that disability was missing from the mainstream. But it wasn’t until around two years ago, when her children were small and she was knee deep in toys, that she had a “lightbulb moment”, realizing disability was missing from the toybox, too.

Along with a couple of friends, Rebecca got to work. She created the Toy Like Me Facebook page and posted pictures of a Tinkerbell doll with a cochlear implant she’d fashioned with modeling clay. The pictures went viral, and the group gained thousands of members overnight. When Rebecca’s online petition asking for toy representation was signed by 50,000 people, manufacturers noticed. Playmobil announced plans for a set of figures with disabilities. The Irish-made Lottie brand got on board, pledging to make a doll with a cochlear implant like Rebecca’s homemade Tinkerbell, and a few months later, Lego released a wheelchair-using figure, attributing it to the #ToyLikeMe campaign.

Two years later, Rebecca’s still waiting for Playmobil. “I’m at that stage where I’m ready to start shouting about that,” she says. However, Lottie’s Mia doll has hit the stores, and Rebecca says the wildlife photographer doll–who just happens to have a cochlear implant–might be her dream doll.

“I love her, I’m very proud of her. If I’d have been given a doll like that, I would’ve been very happy.”

Although she had a lot of friends growing up, Rebecca was self-conscious about being deaf. At school she wore her hair down to hide her hearing aids. She fantasized about a deaf classmate joining her school, so she wouldn’t be the only one.

When she was seventeen, Rebecca was diagnosed with Usher’s Syndrome, a genetic disorder that had caused her deafness. The condition also causes retinitis pigmentosa, and Rebecca was told she’d lose her vision. “It was quite a big blow,” she says. She left school: she had better things to do. She went on to study film and TV, and then moved to London to work at the BBC.

The Irish toy maker Lottie created Mia, a doll who has a Cochlear implant.

Eleven years ago, her sight worsened.

“I was living in central London, and it was very busy. I didn’t have a guide dog or a cane because I was in denial. I didn’t want to look blind.” She left her job to freelance, eventually moving to Norwich on the east coast to bring up her children, who are now nine and seven. Her vision has narrowed to a tunnel, and she gets around with help from her guide dog, Ruby.

Now, she works full time on her campaign. Looking for other ways to get her message out there, Rebecca’s exploring the possibility of a television show, working directly with children, and a longitudinal study with Goldsmiths, University of London.

Dr. Siân Jones, a research fellow at Goldsmiths, is hoping to lead the study. Siân carries out studies with Playmobil figures, harnessing children’s imagined play to measure their attitudes to ethnicity and disability after they’ve played with a figure with an unfamiliar identity.

With a group of 600 children, Siân measured the effect of playing with toys with different disabilities. She discovered that after three minutes of play, children spoke about disability in a more positive way, and displayed less anxiety about interacting with people with disabilities.

Siân, who has cerebral palsy, discovered when she worked directly with the children: the positive effects were increased. “It was an added kind of booster effect on top, it was an unexpected finding from that but it was nonetheless a good one.”

Siân is hoping to begin work on a year-long study examining children’s attitudes when disabled toys are left in their classrooms.

After twenty minutes of playing with a toy, children have been shown to find disability less scary when they encounter it in the real world.

“At the moment, we’re waving goodbye to the children after about 20 minutes of testing, with no idea how long these effects last. The longitudinal study will allow us to put toys in the classroom which is much more realistic, and to test over the course of the year to see whether there’s any change in attitude.”

Growing up, Siân says she was resigned to the fact she wasn’t represented. “I just didn’t expect to see any [representation]. My contact with other children with disabilities was very, very low as a child and so there was some isolation around that.”

Seeing toys that reflect themselves is important for children’s identity, Siân says. “If the toys represent [children with disabilities] it shows that they matter as a part of society. The toys act as role models: Barbie science dolls and the Lego scientists dolls show girls that they can be in that role, but disabled toys are missing. That presents quite a powerful message about the position of children and adults with disabilities in society: they’re just not there, and they can’t do these things.”

Siân believes disability is the “poor cousin” of ethnicity. “In most toy sets now you will see the male and the female represented in different ways, and there’s multiple ethnic characters, but disability is still not very well represented in the toy box.”

Siân adds that it’s important for every child, disabled or not, to see representation. “It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

“It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

Toys can help children work out the similarities between them and other children with disabilities, and through her research, Siân’s discovered the importance of helping children explore disability on their own terms.

She remembers one child playing with a legless Playmobil figure. “He played about thirty seconds of football before realizing that it wasn’t going to happen, at least, not in the way he was doing it. That just gave him a safe space to think about the rules of that game, and how he could play football with a child with no legs in a wheelchair.”

It’s important for kids to have toys to play with that are as diverse as they are.

Siân and Rebecca both mention the strength of imagination, the complex worlds and fantasies children create for their toys to inhabit. Toy manufacturers are well aware of this, creating mainstream toys with magical powers and fantasy features. But when it comes to disability, they fall back on stereotypes and everyday reality: Playmobil’s existing wheelchair-using characters are a child in a wheelchair or an elderly man. Lego’s wheelchair figure is a boy in a grey chair.

“That doesn’t speak anything to the child that is disabled,” Rebecca says. “With characters that don’t have a disability, we don’t have a problem saying, that character can be anything. But when it comes to disability we put restrictions that character. People will say, we can’t make a wheelchair fly, because in real life wheelchairs can’t fly, and we might offend somebody.”

Rebecca would like to see toy brands share responsibility for representation. “I would like to see a better peppering across the whole market: Lottie have the hearing aid doll, Barbie could bring out a wheelchair doll, let’s say Playmobil have a guide dog. Saying these things should be visible around the toy industry doesn’t mean one brand has to do it all.”

The Legos, Mattels and Playmobils of the world wield enormous influence, she says. “If a big brand recognises you, that is powerful. When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“Toy Like Me is the first time where somebody has stood up and told these big brands that they have a moral responsibility to represent diversity to children, and to include disabled children in their products. [Big brands] hold the power to promote massive social change, and it’s time we saw that happen.”