Whoever said disabled people cant scale mountains hasnt met Bill Barkeley.
In September 2007 Bill, 45, accomplished a truly awe-inspiring feat he climbed Mount Kilimanjaro, an inactive volcano in northeastern Tanzania and, at 19,340 feet, Africas highest peak.
What is so incredible about that? Bill is one of 20, 000 people in the United States and 100,000 worldwide, who suffer from Usher Syndrome, a condition characterized by hearing impairment and progressive blindness.
My hearing loss is 85 percent bilateral, progressive, severe sensorineural hearing loss, Bill, of Grand Rapids MI, says. I have had hearing aids since the age of five. I am also legally blind.
An Incurable Condition
The major symptoms of Usher Syndrome are hearing impairment and retinitis pigmentosa, an eye disorder that causes a person's vision to worsen over time. According to the National Institute on Deafness and Other Communication Disorders, Usher Syndrome is inherited or passed from parents to their children through genes. Researchers are currently trying to locate and identify the genes that cause this disability. These studies will lead to improved genetic counseling and early diagnosis, and may eventually expand treatment options for this incurable condition.
Research is also being conducted to improve the early identification of children with the syndrome. Treatment options such as the use of cochlear implants for hearing impairment, and intervention strategies to alleviate retinitis pigmentosa are also being examined.
Preparing for the Climb
While hearing-impaired people can climb mountains, deafness combined with greatly diminished eyesight makes such an exploit difficult, if not impossible.
However, those obstacles did not stop Bill. He contacted Phonak , the Swiss-based manufacturer of technologically advanced hearing systems. The company referred him to its Hear the World Foundation, which educates people about the importance of preserving good hearing, and treating the impaired one.
The Foundation gave Bill two top-of-the-line hearing instruments: Savia Art 411 dSZ, which actively monitors the environment and tailors the sound to its wearers specific hearing loss, as well as a wireless FM communication system (SmartLink SX, MicroLink ML9S and MicroBoom accessories) that worked in conjunction with Bills hearing aids.
Earlier this year Bill visited Jeff Evans from Mountain Vision Expeditions, a company that organizes trekking and climbing trips all over the world, and arranged to join an expedition to Tanzania in September.
When Bill found out that that Michael Brown, the five-time Emmy Award-winning adventure filmmaker, and Thayer Walker from Outside Magazine would be tagging along, he asked Jeff, the expedition leader, whether he could take outtakes of the climb and share them with deaf-blind people around the world. Jeff, Michael and Thayer enthusiastically agreed, and, all of a sudden, Bills project became global.
My mission is to educate people about all the available technologies and how they can transform and enhance their lives, Bill says. The greatest message that came out of my climb was that I had dual disabilities and I did not ask for accommodations. The expedition team did not modify expectations, processes or goals to help me summit. I blended in with assistive technology...it was assimilation versus accommodation. That is incredibly liberating. People describe me as deaf-blind but these words do not define me.
The Snows of Kilimanjaro
Talk about challenges! Bill had no previous climbing experience and, in order to ascent the Kilimanjaro, he had to climb rugged rock faces. That is where Phonaks hearing instruments were invaluable, he says.
Jeff was below me on the mountain sending me verbal commands to get up the rock face by wirelessly sending them via the Smartlink directly into my Savia hearing aids, Bill explains. This hearing system was critical to my success, confidence and safety on the climb. One wrong move and I risked injury. Kilimanjaro is the only mountain in the world on which you pass all the worlds climate layers, so I had to hear and see as well as humanly possible through desert, rainforest, rain, vapor clouds, wind and extreme altitude. Fortunately, the electronics never failed.
No wonder Bill describes the climb as one of the most emotional periods of my life. I really wanted to reach the summit not just for myself, but for all those who are deaf and/or blind, and think that they may not be able to reach new heights or experiences in their lives. Only by example was I going to be able to get the message across. It is all about memories. If I go totally deaf and blind, I will have memories that will carry me for a lifetime.
"A Great Inspiration
Bills story serves not only as proof of the incredible advances in the hearing technology, but also as a great motivator to other people with and without disabilities to reach for their dreams.
Bill is a great inspiration for everyone, says Vanessa Erhard Blattmann, spokesperson for the Hear the World Foundation. He is a good example of what can be achieved if one has willpower, optimism, drive, and the support of the best of today's technology. His story also creates awareness for a topic that unfortunately is still undervalued and under-appreciated: hearing and hearing loss.
For Bill and others who have followed his adventure, the climb to Kilimanjaros snowy peak is a testimony of the boundless power of the human spirit.
It is by understanding my disabilities and challenges that I can harness my talents into a source of energy and passion to help others in the world, he says. The greatest thing we can do in life is to suffer well and share ourselves with others.