Local deaf-blind adventurer partners with nonprofits to transcend barriers

When you’re legally deaf and blind, climbing the seventh highest mountain in the world may seem foolhardy. The same caveat holds true for running in the Boston Marathon, whitewater rafting to the Grand Canyon National Park, hiking the Camino de Santiago from France into Spain, or leading an expedition to the Amazon rainforest.

Foolhardy that is, unless you’re Bill Barkeley. The 1980 Catholic Central High School graduate was 27 years old when he was diagnosed with Usher’s Syndrome, an inherited disease that causes progressive hearing and vision loss.

The disorder affects about 25,000 people in the United States and 100,000 worldwide, and is the leading cause of combined deafness and blindness, according to the Foundation Fighting Blindness. The disease has three subtypes that diminish the function of the inner ear and retina. People with Usher’s syndrome type 1 are born completely deaf and experience problems with balance. With type 2, newborns have moderate to severe hearing impairment, and symptoms typically start shortly after adolescence. Visual problems progress less rapidly than in type 1 and hearing loss usually remains stable. Rarer is type 3. Children with type 3 are usually born with good or only mild impairment of hearing. Their hearing and vision loss is progressive, starting around puberty. Balance may be affected.

There are no treatments or cures for Usher’s Syndrome. Barkeley has limited vision but no peripheral or night vision. In time, he’ll go completely blind. He wears a pair of over the ear digital hearing aids to carry on conversations.

“(The diagnosis) explained a lot of things,” said Barkeley, now 55 years old. “In my younger years I would trip, miraculously pick myself up, and not be injured.”

Right away, Barkeley said he had a choice to make. He could either wallow in depression and isolate himself from the rest of the world, or refuse to let the disease define the course of his life.

He decided on the latter.

He received practical assistance—and equally important—a sense of community from the Association for the Blind and Visually Impaired on 456 Cherry St. SE, a nonprofit for which he continues to fundraise. He has also served on the executive committee of the Hearing Loss Association of America when it had a Grand Rapids chapter.

“It’s the people that help make the difference,” said Barkeley. “Just because the doctor says there’s nothing more I can do for you, it doesn’t mean you stop seeking care. You can go to the Association for the Blind and Visually Impaired and they can help you and your family do a lot of things to move your life forward. The bridge to living is at the local level.”

So strong is Barkeley’s belief in blind and deaf people receiving assistance from local resources that he immersed himself with national and local nonprofits that enable people to transcend barriers.

That’s why Barkeley is a long-time board member of Metro Health Hospital (now Metro Health-University of Michigan Health), a position he’s held when he was still director of sales and marketing for Steelcase.

Then in January of this year, Barkeley expanded his horizons again when he was appointed chair of the Metro Health Corporation Board.

He serves on the Metro board, in part, because of his willingness to “share yourself.”

“I could say I can’t do this and I can’t do that and a lot of people say they I have a right to be bitter and angry so you withdraw and pull away and you feel yourself pulling away from the world around you,” said Barkeley.

“For me, life is continuing to progress in a continuum I cannot control. You have to embrace the pain and marinate in what this disease is in order to get to where who you are and then create and generate the options for yourself,” he adds.

“I have strong beliefs that it’s possible for any of us to overcome and transcend the barriers in our lives.”

Which is why in September 2007, Barkeley and a small team climbed the 19,340-foot high Mount Kilimanjaro. It almost didn’t happen until he received assistance from Fort Collins, Colo.-based No Barriers USA, an organization dedicated to helping handicapped people become explorers.

Since then, Barkeley has led deaf student expeditions to the Amazon, Grand Canyon, and Machu Picchu, ran with his sons in two Boston Marathons, and hiked the Camino de Santiago.

And he also is on No Barrier USA’s board as its blind-deaf advocate-adventurer.

“Mobility becomes an issue for blind people, especially the young born with blindness, because people try to keep them in their place, but we’re all wired to move and they’re being told not to move,” said Barkeley.

Though Barkeley had participated in the Boston Marathon in 2012, he was not present in 2013 is when two homemade bombs were detonated 12 seconds apart during the race, killing three people and injuring several hundred, including 16 who lost limbs.
In 2014, Barkeley ran the marathon again, but this time supported two team efforts: the first, Massachusetts Eye and Ear Team, raised over $850,000 for the victims whose hearing was impaired and required prosthetics.

“Everybody keeps thinking you lose limbs with a bombing, but there were a number of injuries that required a new eardrum, lifetime hearing care, new hearing aids, [or] plastic surgery to rebuild,” said Barkeley.

No Barriers USA team also raised $75,000 for people for people to get a new prosthetics.

“Insurance will only cover a basic prosthetic,” said Barkeley. “If you want to be an athlete, you have to get a new one made out of composite materials and it can be really expensive. So through No Barriers we ended up giving a prosthetic leg to a nine-year-old girl who was in the bombing. She wanted to go to the beach and run. Her brother was killed who was 11 years old.”

Barkeley’s next adventure is “hike, raft, kayak, whatever” through Nepal in June, to mark his 10-year anniversary of climbing Mount Kilimanjaro with a team from No Barriers USA that will be include 10 to 15 handicapped kids.

“We’ll have a blind-deaf man, a deaf musician, and a deaf veteran take 10 to 15 kids of all disabilities, physical and mental challenges, to Nepal on the ultimate adventure of a lifetime,” said Barkeley.

He continues, "I cannot deny that I am deaf and blind. I wouldn’t wish it on anyone. But I can also say it’s one of the greatest gifts that has been given me."

Photos by Adam Bird of Bird + Bird Studio, and courtesy Bill Barkely.