No Barriers: Bill Barkeley

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