Lion May 2014 : Page 20

Bocelli says the obstacles he has overcome can inspire others.

True Visionaries

Katya Cengel

For five gifted people, being blind has not been a barrier to blazing new trails, serving others and forging hard-earned insights on the interconnection of all people.

Andrea Bocelli

“What is given and taken is written in the book of Heaven,” insists Andrea Bocelli.

What was taken from him was his sight at age 12. What was given to him was a voice so extraordinary Celine Dion once compared it to how God might sound were he able to sing.

Bocelli long ago accepted both what he considers his gift and his loss with equal grace, using the former to propel himself to fame in both the classical and pop world while not allowing the latter to hold him back. At just 55, Bocelli has both a star on the Hollywood Walk of Fame and a spot in the Guinness Book of World Records for simultaneously capturing first, second and third place on the U.S. classical music charts. He has sung for the Pope and at Ground Zero, received numerous awards and honors and standing ovations that last as long as 20 minutes. His voice is so compelling that it is often described as a separate entity, as if it exists apart from the man. But if his full and powerful timbre was made for the stage, his persona is the perfect accompaniment: a thoughtful and well-spoken artist wrapped in romantic tragedy.

He is fond of saying that the way he lives his life can serve as an example of overcoming difficulties. “This is what I try to do every day, falling and getting up, a thousand times,” he told Ability magazine.

Born in Tuscany, Italy, Bocelli was raised on a farm surrounded by vineyards. He started playing the piano at age 6, later adding the flute and saxophone and finally his famous voice. Despite suffering from congenital glaucoma, he was able to see, albeit badly, until he was hit in the head by soccer ball when he was 12, and his world suddenly went dark.

Yet, as Bocelli explains, darkness is a visual sensation perceivable only by those who can see. “A non-seeing person cannot see 'the darkness,' just like a deaf person cannot hear the silence which is an auditory sensation as opposed to noise,” he says.

In some ways, lacking sight has made it possible for Bocelli to see more fully. For there is more to seeing than just what the eyes show you, he says. Ocular vision provides an overview, while touch and hearing offer individual selections. A concept that is sometimes hard for the sighted to comprehend, the image in our minds is the outcome of both physical and metaphysical input, he explains.

When you are blind everyday life means finding alternative ways to do simple tasks that sighted people can do without much thought. Accordingly, Bocelli says he feels a great solidarity with those with vision impairments. “I think I understand the stumbling blocks they have to overcome,” he says. Yet his good will also extends to the sighted. We are all human, he says. “I believe that we should all–blind and sighted–have a special affinity as human beings.”

The work Lions already do for the vision impaired–from research to prevention to providing services–is of “great importance,” says Bocelli. His goal with the Andrea Bocelli Foundation is to give back to blind people full and independent lives by helping them overcome the limits of their disabilities. Lions furthered the work of his foundation last summer in Hamburg at the international convention when Bocelli received the Humanitarian Award and its $250,000 grant.

His own life has been far from empty. He studied law and briefly practiced it. He married and had two sons, and has since separated and had another relationship and daughter. And of course he sang–and still sings: the great arias mixed with popular music for which his albums are known. He performed in the opera the “Merry Widow” in 1999, at the New York Philharmonic in 2006 and at the Metropolitan Opera in 2011. “Singing is for me a sweet privilege, a medicine, a way to give lightness to life,” he says.

Gordon Gund

Gordon Gund, the former principal owner of the NBA Cleveland Cavaliers, has been around his share of prominent people including basketball superstar LeBron James. But it is another encounter that stands out in his memory– the one with Yannick Duwé. Duwé isn’t a famous athlete, artist or leader. He isn’t even an adult. He is a boy from Belgium who plays soccer, reads the blackboard at school and rides a bike—feats Gund calls “amazing.” Amazing because they are all things Duwé could not do before receiving gene therapy that helped restore his sight, therapy developed in part thanks to funding from the Foundation Fighting Blindness. As one of the founders of the nonprofit, Gund, who is 74, helped establish the world’s largest private funder of research into treatments and cures for blinding retinal diseases.

Duwé was patient number six in the gene therapy trials Gund’s organization helped fund. Meeting him was “really symbolic of what it’s all been about,” says Gund. Being CEO of Gund Investment Cooperation, co-owning the San Jose Sharks professional hockey team, building a Cleveland arena–none of these accomplishments compare to restoring a child’s sight. Since its founding in 1971, a year after Gund went blind from retinitis pigmentosa, the foundation has raised more than half a billion dollars, a majority of which goes toward funding research around the world.

More than 10 million people in the United States are affected by inherited retinal degenerative diseases that lead to blindness like the one from which Gund suffers. But when Gund was in his mid-20s and began to lose his sight, little research was being devoted to the topic. The foundation was a way for him and his wife, Llura, to transform his loss into something positive.

“The important thing about losing any sense … is to remember it isn’t the end of the world, it’s the end of a certain part of it for you,” says Gund.

Instead of focusing on what you can’t do, Gund believes you have to look at what you can. And there is a lot Gund can do. In addition to his business, sports and charitable endeavors, Gund is also a father of two, grandfather of six and successful sculptor. His pieces have been displayed at the Grounds for Sculpture in New Jersey, the sculpture garden of the Philadelphia Museum of Art and the Cleveland Clinic. Sculpting allows Gund to be in touch with the world externally, to take things out of his head and put them in three-dimensional form. His animal figures capture the creatures at an instant in time: a dog stretching, a bird in flight, a fish in a circle. They are moments he recreates not from sight, but feel, something he is helped in by taxidermy samples provided by a local university near his home in Princeton, New Jersey.

Much of what Gund accomplishes is the result of collaboration with others. When you are blind you become dependent on those around you for even simple things such as moving around. You have to trust the people you are with to help you avoid unexpected obstacles. It is the same in business and philanthropy: you need a group to stand behind you. Gund’s philanthropy troop includes close to 300 Lions clubs. Of the 52 fundraising walks the foundation holds around the country, Lions clubs participate in 33 of them. “It’s a great pleasure for me to work with other people,” says Gund.

Erik Weihenmayer

When he lost his sight at 13, Erik Weihenmayer’s biggest fear was not going blind, but missing out on life. He imagined being swept to the sidelines and forgotten, eating Ramen noodles in the dark, forgoing experiences and relationships. “Nobody wants that,” says Weihenmayer, a 45-year-old adventurer who lives in Golden, Colorado. “But blind people often times get derailed and that’s their life.”

It certainly hasn’t been Weihenmayer’s. In 2001 Weihenmayer became the first blind person to summit Mount Everest. He has climbed the tallest peak on each of the seven continents, competed in Primal Quest, known as “the most arduous adventure race in the world,” and starred in ABC’s “Expedition Impossible,” a group race across Morocco’s varied landscape. A former middle school teacher, Weihenmayer has led blind children and wounded veterans on daring expeditions and is currently training to kayak the Grand Canyon. He credits his accomplishments, the feats that have saved him from the life of a shut-in, not to his own will or skill so much as to those who have stood by him along the way.

“I had a great team. I had a great family–that was my team,” declares Weihenmayer.

If there is a captain of that team it would be his father, Ed Weihenmayer. A former Marine attack pilot and football captain, Ed helped equip his youngest child, who was born with retinoschisis, with the mindset needed to view his blindness as a challenge to be overcome and not a barrier to stand in his way. After Weihenmayer’s mother was killed in a car accident when he was 16, his father pulled the family together by taking Erik and his siblings on adventures in places like Machu Picchu, West Irian Jaya and Pakistan. He encouraged his son to wrestle at his high school in Connecticut and stood by later as he took on paragliding, ice climbing and parachuting.

“He has spent his years having a dream, thinking that’s possible even for a blind person and then trying to figure out how to do it,” says Ed.

When Weihenmayer was told it was too dangerous to ice climb without being able to see the ice, he taught himself to determine its quality by listening to the pitch when he struck it. Even then he wouldn’t have been able to ice climb if others hadn’t supported his efforts, helping him plan, maneuver and carry out his escapades.

His whitewater rafting team includes Rob Raker, a filmmaker and Weihenmayer’s kayak instructor; experts from a British company that designed specialized radios for them; and Weihenmayer’s family: his wife, Ellen and children, Emma, 13, and Arjun, 11. With his teammates strategizing and supporting him, Weihenmayer can tackle things even sighted people shy away from. It is a system not unlike the one Lions use to battle blindness.

“I think Lions clubs in a lot of ways is that very team I’m talking about,” says Weihenmayer. “You kind of come together in a collective vision that connects the team, glues the team. That in a way is like the fuel that drives the team forward.”

Weihenmayer recognizes that not everybody is lucky enough to have family and friends as supportive as his own. Through the No Barriers organization he tries to create team environments for groups as diverse as wounded veterans and abandoned children so they too can summit mountains.

Recently he worked with a young boy who had been left in a trash can at birth. His own challenges paled in comparison to the boy’s, Weihenmayer realizes. “I think that’s probably the biggest deficit in your life, when you’re born and from day one you see the world in a trash can,” he says. “You don’t trust the world, you don’t believe in the world, you don’t believe in the goodness of people, you have a feeling that you can make zero impact in the world. And that’s a way, way bigger disability than just being blind.”

Marla Runyan

When she ran professionally, Marla Runyan couldn’t tell how many competitors were in front of her. Six? Twelve? Once the pack had spread out she lost track. In the United States it didn’t matter. The two-time U.S. Olympian was usually in front. When she wasn’t she could rely on the English-speaking announcer to call out placements. But in larger international races it was different. She wasn’t always leading, and the announcer wasn’t always speaking English.

Then she really was running blind, the first legally blind person to compete in the Olympics. She finished 8th in the 1500 meters at the 2000 Olympics and earned a gold medal in the same race at the Pan American Games the year before. She is also a three-time U.S. national champion in the 5000 meters.

Although she lacks central vision, Runyan has peripheral vision and can see things on her sides, above and below. She can see the ground she’s running on. She just doesn’t see it the way everybody else does. It is a concept sighted people often have trouble understanding, she says.

“In general if you say ‘I’m blind’ they know what that means,” says Runyan, who is 44. “But they don’t know what low vision means. They don’t know what it means to have some vision.”

Before she retired from running in 2006, journalists held fingers up, asking her how many she could see. People couldn’t conceptualize her vision status and wanted to define what she could and couldn’t do based on what she could and couldn’t see, she says. That has never gone over well with Runyan, a fierce competitor who began losing her sight at age 9 to Stargardt disease, an inherited form of macular degeneration. For Runyan function and vision are separate entities.

“Because what you do and how you function is based on your own intrinsic motivation, it’s based on how you concentrate, your skills and how hard you’re willing to work–not how many letters you read or didn’t read on an eye chart,” she says.

The doctor who diagnosed her as a child in California informed her parents she wouldn’t be able to do well in school, she wouldn’t be able to compete in sports and she wouldn’t be able to attend college. Runyan decided then and there she was going to prove him wrong. It was no longer enough to do well–she had to outperform her sighted classmates in the classroom and beat them on the field.

“I had been given this challenge. I kind of took it on and said, ‘I’m going to show you. I’m going to prove to you that I can do this,’” says Runyan.

And she did. She obtained two master’s degrees, competed in two Olympics and was the top American finisher in three marathons. In 2002 she married her coach, Matt Lonergan, and in 2005 gave birth to a daughter, Anna Lee. She now lives in Massachusetts where she teaches at Perkins School for the Blind, an institution whose famous former student Helen Keller challenged Lions to tackle blindness.

Runyan’s own education was helped immensely by the closed circuit television a Lions club gave her in the fifth grade. It was her first visual aid and it made it possible for her to read her books again.

“I remember it pretty well,” said Runyan. “At 10 years old I knew what Lions was.”

Sabriye Tenberken

The hand was dirty and small. But it pushed into Sabriye Tenberken’s own and led her where no one else in Mumbai, India, would: to the address she needed to find but could not see. The boy waited while she was inside. He was a street child who couldn’t read or write, but he had taught himself perfect English by listening to a tiny radio a tourist had given him. Later Tenberken tried to give him something as well, to thank him. But he refused to take anything from the blind woman, telling her “you’re one of us.” It wasn’t the first time a street child in a developing country had helped Tenberken. And it wasn’t the first time a street child had refused payment.

“It was very sweet,” recalls Tenberken, one of the world’s foremost blind humanitarians. She now resides in southern India.

Street children relate to her because of their own marginalization: “not being in the mainstream of society, which actually is a beautiful way to bond,” she says. Tenberken, who is 43, has a way of turning things on their head. Where others see the difficulty of traveling in developing countries– no chirping crosswalks or sidewalk ramps with tactile clues–she notes the ease of contacting people and the abundant non-visual indicators such as smells.

“Sometimes it smells like a public toilet,” she says. “But then also there are smells of temples. There are smells of incense. There are smells of lots of flowers which are just given as a sacrifice. This is something that makes the whole surrounding very rich.”

Tenberken was 12 when she went blind from a degenerative retinal disease. She was 22 when she developed a Tibetan script for the blind and 26 when she embarked on a solo trip to Tibet. Instead of being discouraged by obstacles, she is energized by them.

Upon discovering there were no tools to aid the blind in studying Tibetan, she created a Braille script which became the official writing system for the blind in Tibet. It took her two weeks. Later, when humanitarian organizations in her native Germany informed her she wasn’t suited for work in developing countries she founded her own organization.

“It’s always good to be forced to find new ways,” she says. “I sometimes pity people for not having these pinching points, these barriers to overcome.”

Her Centre for the Blind in Tibet was the first of its kind, offering education to blind children, long shunned in Tibet due to the belief that blindness was a punishment for the wrongs of past lives. It was in Tibet that she met her boyfriend and business partner, Paul Kronenberg. Together they formed Braille Without Borders, which now encompasses the Tibetan program and Kanthari, an institute in Southern India which provides leadership training for innovators with ties to marginalized communities. In Tibet the program has expanded to include a massage clinic, a Braille book production center, a farm, a bakery and a music program all designed to educate and employ the blind.

“It is wonderful to work with a partner that also doesn’t think in ‘borders,’” Kronenberg wrote in an email. “This provides a very fertile ground for finding solutions fast and efficiently.”

And with Tenberken those solutions, and the results, are bound to be surprising. One of the stories she likes to tell is that of a little boy in Tibet who one day declared how happy he was to be blind. His reasoning was that he was the only one in his family who could read and write, the only one in his village who could speak three languages fluently and the only one in the region who knew how to use the Internet, all things he had learned at the center where he went because he was blind.

For Tenberken blindness has its rewards as well. It improved her concentration, communication and ability to solve problems. “Blindness has a different life quality,” she says. “And from my perspective I’m very, very grateful for everything that happened.”

That is the main message she wants the sighted world to understand, including Lions. From the beginning Lions clubs have supported her work financially, and she is grateful for all they have done. But Tenberken, typically blunt, also has a little advice concerning the program name “SightFirst.” “Sight first is a wonderful thing. But the blind are not last. We should never forget the blind,” she says. Still, she admires and respects Lions who have supported her efforts “again and again.”

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