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Ask Ada: When Is It Okay To Help A Disabled Person?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag. What’s The Best Way To Offer My Help To Disabled People? Dear Ada, I’m a commuter and spend a huge amount of […]

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

What’s The Best Way To Offer My Help To Disabled People?

Dear Ada,

I’m a commuter and spend a huge amount of my time daily on public transportation. I regularly see people with disabilities also accessing public transportation, and sometimes, I wonder if I should offer my assistance. For example, there’s a blind woman on my train who uses a support cane; yet all of the other passengers rush past her to get on the train. Another person I see on occasion who appears to be hard of hearing looks like they’re sometimes confused as to when their stop is coming. Should I ask them if they need help? Should I just start helping? I don’t want to insult them, because they’re obviously managing on their own. I just think that we could all use help, and I don’t mind stepping up to offer help. Should I, or shouldn’t I?

Sincerely, Conflicted Commuter

Dear C.C. —

Asking to help someone if you have genuine intentions is never wrong — ever. But before you offer your help, take a moment to check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled. 

For example, the person you mention who is deaf or hard of hearing probably does know where their stop is. They’re counting and watching for each stop on their route, and as long as everything is going forward as expected, they can manage fine without assistance. They don’t need your help, and offering it might actually have the opposite effect, confusing them when they are getting along just fine.

So when might this person need help? When something happens out of the ordinary which they can’t hear. For example, imagine a scenario where a train needs to skip a stop, or is being rerouted, and an announcement is made over the intercom. In that scenario, you should absolutely offer them your help. 

When you do feel like you should offer your assistance, it’s imperative you ask permission of the person first. A simple, “Would you like a hand with that?” or “Do you need any help?” is the easiest way to start the conversation. If your offering help to someone who is deaf, make the gesture of what you’d like to do, and then look to their face for approval.

Check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled.

If the person says no, then smile and go on with your day. If they say yes, then let them tell you what they need from you. For example, the blind woman may ask you to take her arm and guide her onto the train. Or, she may simply want you to tell her if the car is too full to enter at this time.

Someone may agree to accept your help, and then not instruct you how to proceed. In this case, explain everything you’re doing before you do it. For example, say to the woman who is blind: “I am going to stand to your right and block the individuals on my side from rushing past you. Please let me know if you’d like me to take your arm and help guide you into the train or if this is sufficient.”

By explaining your actions before taking them, you’re giving the person you’re helping the agency to accept what you’re suggesting or request you do something differently.

The most important thing to remember is this: Offer help to a person with disabilities the same way you would for an individual who is able-bodied. Be genuine, be sincere, and lead the conversation by asking for their permission first.

A depressed man with a man bun looking sad.
Photo by Matthew Henry from Burst

How Can I Reach Out To Someone Struggling With Depression?

Dear Ada,

My adult sibling was diagnosed a few months ago with depression and anxiety. He told us all about the diagnosis, but my family isn’t really the close-knit, sharing type. So, when he mentioned it at a holiday party, everyone kind of acknowledged what he was saying, but then moved on with a different conversation. My best guess is that no one has really followed up with him, mostly because we’re all a bit emotionally-naive in my family — myself included. I’d like to be better, and I want him to know I’m here for him. Can you teach me easy ways to reach out to him. Remember, this is awkward for me, and will likely be awkward for him to receive the help.

Sincerely, A.S.

Dear A.S. —

It must have taken a lot of courage for your brother to speak up and share his diagnosis with you and your family. It’s so nice to hear you’re stepping up to show you care, even though this isn’t exactly the kind of conversation that is easy for you.

You mentioned that your brother shared his condition, but you didn’t say how he’s handling everything. Is he seeing a therapist? Find out, and encourage your brother to do so if he is currently trying to manage on his own.

If you’re feeling too uncomfortable talking to your brother about everything, remember that you can always initiate the conversation via text, email, or a social media message. A simple note praising him for sharing his struggles and letting him know you support him is a great first step.

Not sure what to say? Try this:

“I know it’s been a little while since you told us you were diagnosed with depression. I wanted to let you know that I’m proud of you for speaking up, and that I’m here for you if you need anything at all.”

Do your best to support him in the way he needs, and not what you think he might need.

When he answers, ask him this question: “In what ways can I support you?”

Depression manifests differently in each person, and because of that, it can be tough to know what kind of help he needs. Hopefully, he is aware and is able to relay that to you. If so, do your best to support him in the way he needs, and not what you think he might need.

If he’s not sure how you can support him, the best thing you to do is be a constant in his life. Because you’re already concerned about being vulnerable with each other, just worry about being present. Email him funny GIFs ask him to hang out with you more often.  It’s not your responsibility to be his doctor or therapist, so take that weight off your shoulders, and instead, just be there.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Disability

Paintings Everyone Can See, From An Artist Who Can’t

When Japanese-Mexican artist Shino Watabe lost her sight, she thought her career was over. But then she realized there were other ways to see.

Most museums have a strict rule: Stand back from the paintings.

But a new Mexico City exposition entitled ‘Journey of Dreams’ challenges viewers to do just the opposite.

The exposition by Japanese-Mexican artist Shino Watabe, which will be held this weekend April 6th and 7th, invites visitors to explore a series of paintings with their senses alone, coming to know trees, plants, bicycles and other objects through the raised texture of the bold-colored works.

“We impose limits on our own selves,” says Watabe. “If we get rid of limits on ourselves, (unexpected things) can become reality.”

Watabe’s objective is twofold: To allow visitors to experience what it’s like not to see, and to enable them to develop their sensory capabilities.

Watabe’s objective is twofold: To allow visitors to experience what it’s like not to see, and to enable them to develop their sensory capabilities. Some paintings are infused with mandarin peel and flower aromas, and visitors have the option of using a blindfold as they make their way around the roughly 50-piece collection.

But while the exposition helps reimagine the interaction between onlookers and art, its provenance also comes from a more personal experience: Watabe’s own struggles going nearly blind.

Attracted by Mexico’s muralist tradition, the now 49-year-old artist left Tokyo when she was 17 and began studying oil painting at the National Autonomous University of Mexico’s school of plastic arts.

Years later, however, she lost her vision “from one day to the next.”

“I had no knowledge about disabilities,” she recalled. “I was paralyzed by shock.”

A painting by Shino Watabe of a dachshund in a bicycle basket.
By using raised patches of paint and imbuing her paintings with smell, Shiro Watabe’s art can be ‘seen’ with multiple senses.

Around 2008, Watabe was interned at various hospitals, received a misdiagnosis, and underwent an unsuccessful operation before later finding out her lack of sight was the result of optic nerve atrophy, which is the degeneration of the cluster of nerves that carry information from the eye to the brain. A neurologist also revealed a hard truth: The condition has no effective treatment.

“I couldn’t even go to the corner store near my house, or take out the trash when the garbage truck came,” she recalls. “I said, ‘how do I survive?'”

Beset by anger and “total denial,” she also refused to use a walking stick and constantly crashed into objects around her.

“I said, ‘Someday I will see again, I have no disability,'” she said.

Physically, she “fell and fell and fell.” Emotionally, a deep depression took hold.

It was around that time, however, that two separate events inspired her to accept the circumstances and become a source of inspiration for others.

First, she returned to painting. Beginning with relatively simple crafts, she discovered she was still capable of making art by relying on the use of textures: One of her first projects, for example, involved flowers made out of paper, which she then glued to wood and painted over.

“I do not want to call it therapy, but it was a therapy,” Watabe said, adding that she is still able to distinguish primary colors. “I think art was a key to being able to get all that out.”

A painting of two fruits by Shino Watabe.
One of Watabe’s paintings painted after the loss of her sight.

During her first exhibition after she lost sight, she also sold two works.

“I said, `I think this is a message from destiny because I had already left painting behind,'” she noted, saying that for many years prior she had been working in an office to make ends meet.

Then, as Watabe began to navigate the world of the blind, another moment gave her hope. She was invited to participate in a bike ride held by the Mexican nonprofit Journey for the Blind, which takes people with disabilities on bike rides through the capital.

“When they invited me I said, `No, no there’s no way. How am I going to bike ride?'”

When she eventually mounted a bike and felt the fresh air though, she knew she was not dreaming.

“All the things that I thought were impossible, are highly possible, even bike riding,” she said. “That was when my life changed a lot. I said to myself, `the people who can’t see do so much,’ and I can see still see some things and I’m killing myself over this.”

It was that revelation that gave Watabe inspiration for her current exhibit, `Journey of Dreams.’

A friendly Mexican man with his arm around a blind Mexican-Japanese woman with sunglasses pushed up to her forehead.
“Disability is not a barrier,” says Shino Watabe, right.

After the artist found out the nonprofit was in financial straits, she volunteered to paint works and donate funds from the works, which often depict improbable scenarios such as a dinosaur on a bicycle.

“Within art, even a dinosaur can ride a bike,” she said, noting that her own life experience wasn’t too different.

The message, Watabe says, is that disability is not a barrier.

Watabe says that disability is not a barrier. “I think it’s an engine that makes us stronger.”

“I think it’s the opposite,” she said. “I think it’s an engine that makes us stronger.”

“We can become disabled at any time, like I did, so (this exhibit) is to help society become more sensitive not only toward disabilities, but also with diseases, syndromes,” she said.

“I think art is a tool to unite us and help us think about another person, not only me, me, me.”

‘Journey of Dreams’ will be on display at the Japanese-Mexican Association in Mexico City on April 6 to 7th.

Disability

By Wheel, By Stick, By Crutch: Making The World’s Wonders Accessible To All

Everyone will eventually be disabled, which is why Wheel The World is making parks and trails around the world accessible to all.

One day in 2017, while finishing business school at UC Berkeley, Alvaro Silberstein was chatting with his longtime friend Camilo Navarro. Camilo suggested that the two take a 5-day trek through the Torres del Paine National Park in Chile, their home country.

It was a trek that Alvaro–who has used a wheelchair since he was 18, due to a spinal cord injury–had always wanted to make. “It sounded amazing but also maybe impossible,” he remembers.

To assess the challenge, they called the National Park authorities and local travel services asking about wheelchair accessibility. But no one could tell them anything. If it had been done before in a wheelchair, no one could tell them about it. So, Camilo and Alvaro decided that they would not just hike the trail, they would blaze it– at least from a wheelchair accessibility perspective.

Alvero Silverstein, co-founder and CEO of Wheel The World, smiles at the camera. He is wearing a baseball cap, is unshaven, and is wearing a brown jacket with an orange collar.

Alvaro Silberstein, co-founder and CEO of Wheel The World.

A mere 26 months later, and Alvaro and Camilo run Wheel the World, which offers tours in the US, Peru, Tanzania, Brazil, Costa Rica, Chile, and Mexico that are accessible to people with a growing range of disabilities. They plan to “open” ten more destinations this year, and hope to eventually offer tours to thousands of locations. Their goal is to enable millions of people with disabilities to “explore the world without limits” by visiting national parks, heritage sites, and other destinations that have been historically tricky or impossible for disabled people to enjoy.

But that’s not all. Not only does Wheel the World offer packages for disabled tourists, they also train local services in accessibility. They also partner with different sponsors for specialized equipment like adaptive bikes and wheelchairs, which they leave on site for future use by anyone who needs it.

Folks caught up with Alvaro Silberstein to talk about how Wheel the World works, and where it’s headed.

How did the original trip turn into you and Camilo creating a company together?

At the time, I was working for a startup in the Bay Area that developed futuristic wheelchairs–so I knew about the new technology and new equipment being created. I found a special hiking wheelchair but it cost $8,000 and that was prohibitive. Even the shippings costs to rent it would have been too much. So we decided to turn the trip into a project with the objective of making this specific trek accessible for wheelchairs. We decided that we would leave the equipment there and train local travel services to repeat the trek for others. We funded the project on Kickstarter.

It was such a cool feeling to be in a place that, since my injury, I thought was no longer for me.

I always loved being in nature and traveling but there was a lot that I thought was just impossible for so long. It was crazy! It was such a cool feeling to be in a place that, since my injury, I thought was no longer for me. I think it was also really cool for the operators, tour guides, and travel services because they were all super excited to see someone in a wheelchair doing it. We all figured out how to make the transport and accommodations accessible together as we went.

We also filmed the entire adventure and made a video that went viral. We started to receive a lot of requests from people with disabilities and people that wanted to help their friends or family members do the same thing. We started organizing the trip for other people, just because we wanted to make an impact around our initial idea. But then we got really excited and we thought, “why don’t we replicate this in other places?” We were able to get sponsors for the second trip which was to Easter Island. They provided special wheelchairs for volcanoes, adaptive bikes, and even adaptive scuba equipment. It went from there.

We started off trailblazing, but we realized there is a lot of accessible travel out there and that’s when we started also partnering with local accessible businesses and services.

Two friends helping a disabled man hike on a beautiful trail at sunset.

There’s no where that isn’t accessible when you have the right equipment and friends. Which is where Wheel the World comes in.

From what I understand, part of making these locations accessible is that you get the special equipment sponsored and then leave it with local services. So can anyone who visits there use them?

Adaptive equipment is super expensive in general. Most people aren’t going to buy an $8,000 wheelchair to use once a year. In the US people are used to equipment being funded by insurance or medicare but that’s not the case in other places. So we leave the equipment in the locations and train local services to manage and use the equipment. Depending on the equipment and the location, people might need to purchase services to use them, but that’s how we protect the equipment handle safety concerns. We want to make sure people know how to use it. So far, equipment we’ve left in different places has been used over 500 times.

Most people aren’t going to buy an $8,000 wheelchair to use once a year… So we leave the equipment in the locations and train local services to manage and use the equipment.

How do the special chairs work for hiking?

The hiking chair works in a team of three people. It’s designed so that the pushing motion of the person behind you is very natural. The person in front of you has a harness where a backpack would go. Those two people walk in a synchronized way. For the person in the wheelchair, or at least for me, it can take a little get used to. I was used to pushing myself. But at the end of the day it’s impossible to get to these places otherwise, and I think that’s something that other people on our trips have realized too. Once you’re used to it, it’s actually a fun group activity. It’s teamwork. You have to communicate all the time.

A smiling disabled woman in a custom-built wheelchair for getting into the wall with scuba diving. The chair has three big yellow wheels and floats. She smiles at the camera wearing full scuba gear, with the beach behind her.

Wheel the World wants to make any adventure you can imagine accessible, like scuba diving.

What about the special bikes? Are there different kinds for different disabilities?

Yes! Once we went to the Atacama Desert with a blind person to understand their experience. We went with a tandem bike for him, but in the middle of the trip, it got a flat. I was using a bike that I crank with my hands–it’s great for me. We have another bike called a recumbent that’s meant for people with balance or back problems where you lean back and crank with your legs. We ended up combining those bikes so that I was the eyes, and he was the legs. He was a lot stronger than me, so we could go a lot faster. Now we use this type of bike for bike trips with blind people.

What have been the most challenging trips to design?

Definitely the Inca Trail! I went to Cusco when I was 17, right before my accident. I took the train to Machu Picchu but there was a protest on the train, so we only got to stay for about half an hour. I was sad, but I didn’t care that much because I thought, “of course I’ll come back here and I’ll do the Inca Trail.” After my accident, I just thought I never would. But since the project started, I’d wanted to try it. We underestimated how hard it would be. It was intense, and even a little bit risky. That’s why we’re not offering it as a tour. That was the first time we realized that something was just a little bit too much. We’re still offering tours of Machu Picchu, just not the trail.

A disabled woman cycles in tandem with a partner on a leafy trail, with another bicyclist following behind.

Tandem cycling is one of the many options Wheel the World offers.

What kind of disabilities do you design trips for?

We started for an obvious reason with wheelchair users. Now we work with many types of people that have various types of disabilities like blindness, Cerebral Palsy, and cognitive disabilities. But really, anyone up for a cool adventure– it doesn’t matter if we already offer it– can reach out to us! We know some disabilities more than others but we’re open to learn how to accommodate anyone. We have a physical therapist on the team that looks at special requirements to figure out if we can address them.

People think of disability as something separate from themselves, but actually, disability is the only minority group to which everyone will eventually belong.

We want to work more with seniors. I’ve been trying to convince my grandma to come trek with me in Torres del Paine. Our communications are very…millennial. But, we’re realizing that there are so many seniors that can walk, just not that much, that would benefit from our services. People think of disability as something separate from themselves, but actually, disability is the only minority group to which everyone will eventually belong.

Disability

The Blind Man Pushing Companies Into The Future Of Accessibility

A combination of fungal meningitis and medical mismanagement may have taken Albert Rizzi's eyesight, but they didn’t take his vision for the future--or his gumption.

Albert Rizzi comes from a family of foster parents. His grandmother fostered 65 children, and his parents took in their first foster child just a few days after his oldest sibling was born. Growing up, his parents even contributed to the Fresh Air Fund, taking inner city kids into their country home during holidays so they could experience nature firsthand. 

So it’s no surprise that Albert grew up wanting to foster children, and when he couldn’t as a single male, he decided to put his energies into going back to school for early childhood education. For the next few years, he pursued two simultaneous masters degrees (one in education and one in administration) and went on to direct a pre-K and Kindergarten after-school program that serviced 250 students and their families in the South Bronx.

Then things took a turn. Shortly after buying a house in 2005, he had what he thought was an annual sinus infection. When the pain in his head became “tremendous,” he went to the hospital. After five spinal taps, two misread reports, and two months, Rizzi left the hospital with no eyesight and fired from him job. (Yes, that’s illegal.) But he didn’t give up.

“Helen Keller said that the only thing worse than being blind is having sight but no vision.”

“Helen Keller said that the only thing worse than being blind is having sight but no vision,” says Rizzi. “I believe I’ve never seen more clearly in my life.”

It took some adjustment, of course. Rizzi says he felt sorry for himself for a few days. But he had always been a firm believer in limitless potential, which his father was the first to remind him: “We didn’t raise you to be a quitter,” he said. “People look up to you. You always demand 100% from the people around you. So now show us what it looks like.”

Rizzi did.

Albert and his guide dog.

Heading back into the world blind, Rizzi quickly became frustrated with the lack of accessibility he had to digital platforms.“I wanted to assimilate back into society even though I was called ‘disabled’,” he says. But it was digital platforms that were disabled to me. You can’t disable a person. You can disable a bomb or a car or a machine but disabling means make it stop working and moving and functioning. You can’t do that to a person, not really. But still, our lives are so tied to the digital world, and we’re at a disadvantage like never before.”

You can disable a bomb or a car or a machine… but you can’t disable a person. Not really.

By 2008, Rizzi had not just relearned how to navigate the world as a blind person: he had a digital accessibility consultancy up and running to solve the problem.

My Blindspot (MBS) helps companies, government agencies, educational institutions, and other entities get up to speed when it comes to digital accessibility for the blind and print-disabled. There are legally mandated codes that can be programed into websites, mobile apps, native and cloud-based softwares, digitized documents (PDFs), and kiosks to make them compatible with assistive softwares like screen readers that turn the web into audio output, magnifiers for people who are low vision, braille displays, and speech-to-text technology used by many members of the disability community. Far too few entities actually comply or do it correctly.

Where compatibility with assistive softwares might be an afterthought to huge corporations, to someone with a disability it can mean the difference between being able to attend school or seek employment or not… let alone less dire things like booking travel, or shopping online.

Where compatibility with assistive softwares might be an afterthought to huge corporations, to someone with a disability it can mean the difference between being able to attend school or seek employment.

In working with clients, Rizzi always tries to communicate that accessibility is not just the right thing to do. It’s also good business sense: the more people that have access to your company, the better your chances of succeeding. By making sure your websites and others outward-facing products are accessible, you can draw upon not just a deeper customer pool, but a deeper talent pool as well. 

In 2009, MBS made Quickbooks’ platform accessible to the blind. That may not seem like a big deal, but it opened up opportunities for countless visually-impaired people.  “Now, blind and print-disabled people can consider careers in accounting and bookkeeping and can manage their small businesses,” explains Rizzi. He has since worked with clients like American Airlines, the New York Department of Motor Vehicles, Carnival Cruise Lines, and Peapod.

But My Blindspot is only one facet of Rizzi’s activism. He speaks all over the world about accessible technologies, employment, and financial independence for the disability community. And he carries his mission with him all the time. This past April he sued Morgan Stanley for $9 million because their website was not sufficiently accessible for him to manage his assets. He worked with the bank to try to change their practices, but after Morgan Stanley dragged their feet, he felt he had no choice but to sue, which he worries could effect business. “I don’t sue clients,” he explains. “I’m responsible for delivering them the technical solutions to make companies accessible so they don’t get sued,” he says.

But despite his concerns, My Blindspot is still, well, in a good spot. They’re now helping the SUNY and CUNY schools become accessible to the visually impaired. Currently, Rizzi estimates that 90% of the digital platforms used by the schools are inaccessible. But that’s about to change. And when it does, “nobody will have to give up the idea of a having a career in these institutions.”

“Work is the cure for anything.”

That’s what it’s all about for Rizzi. He may have started MBS to make digital platforms accessible, but ultimately, he wants people of all abilities to be able to have jobs. He notes that with more disabled people working, they’d be paying into the tax system rather than depending on it.

“Work is the cure for anything,” he says. “It gives you a sense of value and purpose. My Blindspot is founded on the belief that with the right to tools that promote ability, everyone can achieve greatness.”

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.

Disability

How To Teach Photography To The Blind

Teaching photography to a class of 20 blind students has taught Maria Iturbe to be a better photographer herself.

For most of the week, Mexican architectural photographer Maria Iturbe makes her living shooting building interiors and exteriors, as well as her fair share of executive portraits.

But about five years ago, a non-profit called Ojos Que Sienten, or Eyes That Feel, was looking for professors to lead a 12-session photography class for the blind and wanted to know if the young Iturbe could lend a hand.

Her response was skepticism. Teach the blind to shoot photographs?

“That’s crazy,” she remembers thinking. “I knew about photography, but what I didn’t know was how to teach blind people.”

Then, of course, she got on board.

Eyes That Feel

In 2013, Iturbe volunteered as a class assistant and eventually began leading the Mexico City course. It is offered two times each year to about 20 students.

Some have partial vision and no ability to distinguish colors or see things clearly. Others have lost their sight completely and doubt whether they can take photos at all.

Maria Iturbe.

“Many students are skeptical when they start,” Iturbe says. “They say: ‘Why should I take photos if I’m blind?'”

But the point of the class, says Iturbe, is to address these insecurities, and convince people that they can overcome their fears and do something completely visual. And in that sense, teaching a class of blind students isn’t so different from any amateur photography class.

“It’s a psychological process when you start,” Iturbe says. “You say to your students: ‘You’re going to do this activity which no one— including yourself— thinks you can do.'”

What her students eventually learn is that photography isn’t about what the world looks like. It’s like the images that many of her blind students still see when they dream.

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

At the beginning of the semester, Iturbe hands out cameras, which are loaned to students for the duration of the course. She then explains the fundamentals to her students, some of whom may never have used a camera before. She teaches her students to shoot by imagining their body as a tripod, centering the camera on their forehead or waist to find an axis on which to shoot.

Photo: Ojos Que Sienten

Shooting Without Sight

But how do her blind students find images to shoot? By relying on their other senses.

“When we go to the street we ask, ‘What do you smell? What do you hear?'” Iturbe says.

If it’s a portrait, students touch their subject. If it’s a landscape, they ask assistants in the class to describe a student’s surroundings before the photographer composes the shot.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

It’s a message she takes to hear in her own teaching lessons. She often needs to find metaphors for photographic concepts that make sense to people who may not ever have been able to see. To describe the concept of focusing, for example, Iturbe will use the metaphor of a radio dial, which you twist to ‘tune’ in a station. For depth-of-field, she’ll stand in a line with class assistants and ask them to determine who is standing first, second, and third by listening to their voices. Depth of field, she’ll teach, is choosing which voice to focus on.

The approach seems to work. Her students have taken some remarkable photos: a puddle which appears to probe and stretch the viewer’s senses of perception; a portrait of a monkey in a serious pose.

“They’re not perfect shots with every detail,” she says. “They’re shots that you can feel. And they take you to places you’re not used to.”

Photo: Ojos Que Sienten

The Teacher Becomes The Student

To that end, she notes,the classes have had an outsized impact on her own architectural photography, teaching her how to employ her non-visual senses when shooting. Her students have taught her not just to see the photo, “but live the photo.”

She has learned to think about photography without using her eyes.

Now, Iturbe commonly will blindfold herself and herself when she takes a portrait, using her sense of touch alone before taking a shot.

“The connection is different because it takes away just the visual part, and you can see that in the portraits,” she says.

We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

Another project inspired by her teaching involves X-raying purses, which results in images that can only be seen in their totality at the end of the shoot

“We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

That’s something that teaching Ojos Que Sienten has taught Iturbe. In an age of endless distraction, we may look, but we’re no longer seeing. Thanks to the lessons her students have taught her, Iturbe has become a better photographer.

“It’s changed me a lot,” she says. “I’m now more present, both in the shot and in life.”

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

A Circus That Shows All Bodies Are Extraordinary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Extraordinary Bodies practices.

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

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

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

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

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

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

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

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

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

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

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

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

Disability Vision & Hearing Loss

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.”