No Barriers: Bill Barkeley

11 01 2011

Bill Barkeley is the cover subject for the January/February 2011 issue of Hearing Loss Magazine, which I design and produce bimonthly for the Hearing Loss Association of America (HLAA). I had the immense pleasure of photographing Bill and his wife Mary Beth this past summer in Milwaukee, Wisconsin. He was there as the keynote speaker for HLAA’s annual convention in June 2010.

Bill is one of 15,000 people in the United States and 100,000 in the world with Usher Syndrome Type II, which is the leading cause of deaf-blindness. Bill has worn hearing aids since he was five years old, but in 1987 he discovered that he had been slowly going blind his whole life. “My hearing loss is 85 percent bilateral, progressive, severe sensorineural hearing loss. I am also legally blind,” he said. We took a taxi over to a local park for our photo session, and on the way Bill and Mary Beth told me about their journey since Bill was diagnosed with Usher Syndrome Type II. Usher Syndrome is an inherited condition. The vision loss is due to retinitis pigmentosa (RP), a degenerative condition of the retina, and the hearing loss is due to a genetic mutation affecting nerve cells in the cochlea. Learn more about Usher Syndrome on the Foundation Fighting Blindness website here. Despite their challenges, the Barkeleys are the most down-to-earth, upbeat and positive couple that I’ve ever met!

In his article, No Barriers, Bill writes about dealing with hearing loss since early childhood, marrying Mary Beth and raising their three sons, then being diagnosed with Usher Syndrome Type II. By 2007 he had worked his way up to being a director of sales and marketing for a Fortune 500 company. He then decided he “needed a challenge and a vision to help take me on the next phase of my life.” At age 45, he climbed Mount Kilimanjaro in Africa, utilizing the latest hearing aids, FM systems and Bluetooth technology. He said it changed his life. “I retired from my 25-year career. I became a deaf-blind adventurer and storyteller, traveling the globe while sharing a message of inspiration, aspiration, hope and faith for those with hearing and vision loss.”

Walk Your Own Path, a film by Josh Levine, documented Barkeley’s climb of Mount Kilimanjaro. The climb was also covered in the July 2008 issue of Outside Magazine. In Triumph of the Human Spirit: Reaching New Heights with Hearing Technology, published on www.healthyhearing.com, in 2008, Bill wrote, “My mission is to educate people about all the available technologies and how they can transform and enhance their lives. 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.”

In 2009 he was awarded the No Barriers USA James O. Goldsmith award. The award “recognizes the individual that passionately and selflessly works to break down the barriers that limit accessibility to life. Through pioneering spirit, focused determination, innovative spirit and tireless effort, the recipient opens the door to adventures for others.”

In July 2010, Bill took a group of kids (with and without hearing loss) to the Peruvian Amazon on the first Hear the World expedition. Hear the World is a global initiative by hearing system manufacturer Phonak to raise awareness about the importance of hearing and consequences of hearing loss. The Amazon trip was covered in social and traditional media. Read a recap of his trip here. The website, www.tonic.com, also has an excellent recap of this trip. Bill will lead the second Hear the World expedition with Global Explorers to Grand Canyon National Park in July 2011. Learn more about this trip on www.globalexplorers.org. Applications start January 17, 2011.

Bill also invites adults, parents, families and kids to join him in South Africa this July for the World Deaf Congress 2011, sponsored by the United Nations. He will share a message of “Life Without Limits” using assistive technologies such as hearing aids and FM systems for hearing loss. Learn more at www.wfd2011.com. Barkeley is also on the board of directors of No Barriers USA (www.nobarriersusa.org), a community of modern day pioneers who use the experience of nature to promote innovation, education and assistive technologies that create transformative life experiences and inspire people with challenges to live full and active lives. Learn more about the No Barriers USA 2011 Festival in Winter Park, Colorado, June 28-July 2, 2011 by visiting their website here.

Mary Beth wrote a companion article for this issue of Hearing Loss Magazine. In For Better or for Worse, she explains that, “Communication is the most important element and the glue that binds the relationship and validates the other person. Being married for 24 years is a real feat no matter what the circumstances. I have to say that our circumstances, although seemingly challenging, have proved to bring us closer together in an effort to stay connected and active. We have witnessed the promises we made “for better or worse, in sickness and health, for richer and poorer.” She shares the frustrations and adjustments (revealing both the serious and humorous sides) in dealing with Bill’s hearing and vision loss.

Mary Beth works part-time as the Community Service Representative for HomeInstead, a non-medical home healthcare company in Grand Rapids, Michigan. Bill is now active in community service. He is past president of the Association for the Blind and Visually Impaired (ABVI). He is on the executive committee of the Hearing Loss Association of America (Grand Rapids chapter). Visit his website, www.billbarkeley.com , to learn more about his upcoming adventures and speaking engagements. The Barkeleys have three sons, John (21), Brian (20) and Will (16). Photo of the Barkeley family © Betsy Pangle; all other photos © Cindy Dyer

Read Bill and Mary Beth’s articles in Hearing Loss Magazine by clicking on the pdf here: HLM Bill Barkeley





Bill and Mary Beth Barkeley

24 08 2010

I had the pleasure of meeting and photographing Bill Barkeley and his wife Mary Beth in Milwaukee during the Hearing Loss Association of America’s annual convention in June. Bill was the keynote speaker for the event. I was photographing him for a cover feature article for a 2011 issue of Hearing Loss Magazine, which I design and produce bimonthly for the Hearing Loss Association of America.

In addition to his career as a motivational speaker, Bill works for Steelcase, Inc., with leadership positions in sales and marketing in Seattle, San Francisco and Grand Rapids, MI. He is currently Director of Marketing for the Steelcase Premium Group.

Bill is one of 15,000 people in the U.S. and 100,000 in the world with Usher’s Syndrome (Type 2) the leading cause of deaf-blindness in the world. His hearing loss is 85% bilateral, progressive, severe sensorineural hearing loss. He has worn hearing aids since he was five years old and discovered he was going blind at age 28. He is now legally blind. The symptoms of Usher’s Syndrome are hearing impairment and retinitis pigmentosa, which causes vision to worsen over time. This incurable condition is genetic and inherited or passed from parents to the children.

In 2007, Bill became the first deaf blind person to climb Mount Kilimanjaro, the tallest mountain in Africa (19,400 feet). Initially, he contacted Swiss-based Phonak, manufacturer of technologically advanced hearing systems. He was referred to Phonak’s Hear the World Foundation, which outfitted him with hearing instruments. Bill then contacted Mountain Vision Expeditions, a trekking and climbing company, to set up the Mount Kilimanjaro trip in an effort to raise funds for Hear the World. The climb was featured in the July 2008 edition of Outside Magazine, as well as Josh Levine’s film documentary, Walk Your Own Path—Bill Barkeley’s Climb of Mount Kilimanjaro. Click here to hear the 2009 interview, Life Without Limits, with Barkeley on the WGVU Morning Show. Barkeley was featured on ABC News in 2007 in an interview here.

Bill recently returned from a trip to the Peruvian Amazon for Hear the World, a global initiative by Phonak and Global Explorers, a not-for-profit educational travel organization. The expedition integrated students of mixed hearing abilities (both hearing and hard-of-hearing) to raise awareness about hearing. Click here to meet the young explorers who joined Bill on this life-changing adventure.

Check out the videos made during the expedition (from the Hear the World Facebook page):

Sounds of the Jungle
The expedition team describes the unique sounds of the jungle on their first day in the Amazon.

Hearing Technology in the Amazon
Many of our students with hearing loss have never heard underwater sounds before. By utilizing an underwater microphone linked to an MP3 recorder connected to a Phonak MyLink unit that wirelessly transmitted the sound to anyone wearing a cochlear implant or hearing aid, students like Zoe, had the chance to hear a number of new water sounds she never knew existed!

Turning the Sound Off
Students without hearing loss wore high-powered ear plugs during a hearing loss simulation exercise to give them a taste of what their friends with hearing loss experience every day. This video details the students reactions to the exercise.

Photo by Cindy Dyer. All rights reserved.