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Courageous Climb

Spring 2008

Alumni Profile - Class of ’84

Born with a rare disease. Deaf since age 5. Blind since age 28. You could argue that Bill Barkeley’s whole life has been an uphill battle.

But Barkeley ’84 has always been one to rise to a challenge.

The Grand Rapids, Mich., businessman and father of three recently scaled Mt. Kilimanjaro, the world’s highest freestanding mountain, using the same tools that have helped him succeed all his life: assistive technology and a positively indomitable spirit.

Barkeley, 45, has Usher’s Syndrome, a genetic condition that progressively robs its victims of both their sight and hearing. Barkeley is “severely to profoundly deaf” and legally blind. He has a 20-degree field of vision – a veritable pinhole straight in front of him, surrounded by black.

There is no known cure for the disease, which affects only .004 percent of the population. Barkeley jokes that he “won the lottery.”

“Deaf-blindness is not a bad thing,” says the USC Marshall School of Business graduate, who attended mainstream schools his whole life and now heads up marketing for Steelcase Premium Group, a division of the world’s largest office furniture manufacturer. “The problem with a disability is everybody will set expectations for you, what they think you can and can’t do.”

Imagine their surprise when Barkeley reached the icy summit of Tanzania’s extinct volcano in September. With the help of a mountain guide and state-of-the-art audio and visual aids, he climbed 19,000 feet above sea level in six days.

Not only was Barkeley able to raise people’s expectations of what a “disabled” person can do – a feat he describes as “just a liberating thing.” He also proved that scientific advances are making mountains into molehills.

“The whole project,” says Barkeley, who was on Good Morning, America after the trip, “was about trying to educate the world about assistive technology.”

At USC alone, he says, Mark Humayun, professor of ophthalmology, is  making great strides in research and vision-loss treatments.

“The biggest shame is that assistive technologies are out there and that patients, families and doctors don’t know about them.”

He trained for the trek with daily hikes around Grand Rapids nature trails, or up staircases, carrying a weighted backpack. The routine helped him shed 35 pounds. “I’m actually back to my college weight,” he says proudly. “But it was an expensive weight-loss plan!”

He set out for the mountain with night-vision goggles and a Phonak FM sound system. Purchased with a $10,000 grant from the Hear the World Foundation, the Phonak is a wireless microphone and transmitter that allowed his guide, Jeff Evans, to speak directly into Barkeley’s hearing aids from up to 100 feet away.

“The guide would be below me on the mountain giving me instructions on how to climb: ‘Go right, go left, put your foot here,’ “ he says. In subzero temperatures, in the dark of night, amid whipping wind, Barkeley did as he was told. “It was the difference between making it or not making it,” he says. “You feel so much more confident when you can hear someone else’s voice, an expert.”

The best part of the trip was the things he saw and heard, thanks to the top-notch technology: water cascading down streams, monkeys croaking and ratting and a night sky thick with twinkling stars.

“I haven’t been able to see stars like that since I was a little kid,” says Barkeley, noting that he will lose all of his vision eventually. “It’s just a matter of time. As I go blind, all of these memories will be mine forever, and no one can ever take that from me.”

 – Starshine Roshell

 

Photo by Jeff Evans