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

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Hallelujah light

12 12 2009

“Fingers of God” light (and a curtain of rain, I think!) over mountains near Aspen, Colorado (solo trip) and in sunset near Arches National Park, Utah (road trip with my friend Cammie). 35mm slides scanned by ScanCafe.com

© Cindy Dyer. All rights reserved.






Lone gull, lone cloud, lone man

12 12 2009

Seagull on Chincoteague Island, Virginia; lone cloud somewhere in Colorado; and Dad during our road trip—Great Adventure #678—in 1990 (which he writes about in his recent blog posting, “Arizona apples & cheeseburger briefs” here). 35mm slides scanned by ScanCafe.com

© Cindy Dyer. All rights reserved.





From my 35mm slide archives: Southwest images

1 12 2009

After reading glowing reviews (by professional photographers, no less…and from my favorite graphic design guru, Chuck Green) about the scanning services of www.scancafe.com, I thought I’d give them a try. While I own a really nice Nikon Coolscan dedicated slide scanner, the thought of (eventually) scanning thousands of my old slides is daunting. I also wasn’t happy with the results I’ve been getting lately from random slide scans. Although it takes awhile to get the images scanned with this service (they outsource overseas), the price is phenomenal. I took advantage of their recent quicker turnaround and 25% off special this weekend and expect to have an online review of the images around the 18th of December. They return the slides with a DVD of the final scans. What’s really neat is—you can reject up to 50% of the images you send in. How they can profit from that, I don’t know, but it was enticement enough for me.

Photo 1: one of my favorite places in Arizona—Canyon de Chelly, in Chinle, Arizona. After a lengthy hike to the bottom of the canyon with my father, I photographed the White House Ruin (Photo 2). The White House Ruin was made famous (photographically) by Ansel Adams in his beautiful black and white image here.

Photo 3: Hovenweep National Monument, archeological site near the Utah-Colorado border. Remind me someday to tell you a funny story about how my dad and I discovered Hovenweep.

Photo 4: Kodachrome Basin State Park, near Cannonville, Utah. My cousin Bill and I stopped at this park on our Vegas-to-Lake-Powell adventure. How could I not stop at a park with the word “Kodachrome” in it? (Never mind that I shot almost exclusively with Fuji Velvia at the time!)

Photo 5: Petrified Forest National Park in the Painted Desert, Arizona. While we’re on the subject of the Petrified Forest, I just stumbled across an instant message discussion on AOL that I had with my dad after that road trip so many years ago.

Me: Remember how beautiful the light was when we visited Petrified Forest? Those stormy clouds coming in over the bright blue sky?

Dad: I remember it.

Me: And how you wanted to steal a piece of petrified wood but I told you that it wouldn’t look too swell for a U.S. Customs officer to get arrested for something like that?

Dad: So we bought some at the rip-off gift shop. Guess where they got ’em!

© Cindy Dyer. All rights reserved.





Awards acceptance speech, October ’08

28 11 2009

Today I’ve been in spring cleaning mode (yet again). I’ve also been cleaning up my computer desktop and triple-backing up important files. I just came across this acceptance speech I wrote last year. In August 2008, Barbara Kelley, editor of Hearing Loss Magazine, began interviewing me for what she said was an article that would highlight professionals with hearing loss. I had no idea she was actually filling out a nomination form for a contest!

In early October 2008, just a few weeks before the awards event, I received notice that I was the winner in the Adult Category in Oticon’s annual “Focus on People” awards event! Oticon paid for flights for both me and Michael and provided beautiful accommodations at The Inverness Hotel and Conference Center in Englewood, Colorado, just outside of Denver. Winners received $1,000 each, plus $1,000 to be dedicated to the charity of their choice. Pretty exciting! You can read more about the big event in my posting here. Below is the speech that I delivered at the ceremony.

_____________________________________________________________________________________

MY HEARING LOSS
Not only do I design, produce, and photograph for the Hearing Loss Magazine—I, too, have a hearing loss. I lost my hearing suddenly at age two, and with medical intervention, most of it was restored. To this day, we’re unsure of what happened. When I was seven, I got my first hearing aid. It was clunky and I disliked being different from my classmates, so I refused to wear it. In 1993 I lost all the hearing very suddenly in my right ear, and exploratory surgery revealed that scar tissue had caused the eardrum to collapse. The exploratory surgery did not restore my hearing, so I decided to try an aid again, some 30 years after my first hearing aid experience.

HEARING AGAIN!
That experience was, so to speak, ear-opening! I hadn’t realized the world was so incredibly loud. My new life with a hearing aid had its funny moments. Walking up the stairs in our townhouse, with Michael right behind me, I stopped suddenly and asked him, “Do you hear that noise? What is it?” In the most loving way possible, he said, “Hon, those are your knees popping.” I was mortified! He laments my new acute hearing because he can no longer collect the loose change I drop, unheard, to the floor.

In the beginning, the TV volume was set so low when I controlled the remote that Michael couldn’t hear! I could hear soft noises such as my cat’s purr and water running in the sink and birds chirping through closed windows. There are many events I wish I could relive with a hearing aid now that I know what I have missed.

FACIAL PARALYSIS
Five years ago, my life was upended. During a routine checkup, a new ENT discovered a cholesteatoma in my deaf ear. I hadn’t had any symptoms, so I had no idea how long it had been there. In my routine quest for knowledge, I did some online research, and learned that 1% of patients experience facial paralysis during this type of surgery. I wasn’t concerned. One percent is pretty low odds. I had surgery two weeks later. Unfortunately, I was one of those 1% patients. The entire right side of my face was paralyzed. I was so devastated. I couldn’t smile and my right eye wouldn’t fully close. Because of my surgeon’s aftercare regarding the paralysis, I consulted with Dr. John Niparko at Johns Hopkins just five weeks later. After alarming nerve testing results, I was scheduled for surgery the next afternoon to determine if the nerve had been cut. Fortunately, it had not been cut, but there was some repair work done. I am perennially grateful to Dr. Niparko for his skilled hands, concern, warmth, and kindness. Here I stand, five years later, more than halfway down the road to healing with a renewed sense of hope.

HEARING LOSS MAGAZINE
About three years ago, a client forwarded a job opportunity to me. Without telling me who the client was, she wrote, “this job is perfect for you in so many ways. You should go for it.”

Barbara Kelley, editor of the Hearing Loss Magazine, was looking for a replacement designer. In the end, I believe the scales tipped in my favor partly because of my personal experience with hearing loss. She felt I would bring more than just design skills to the job. My hearing loss actually became an asset in my professional life. Imagine that!

As a result, I’ve met so many interesting people who thrive despite their hearing loss. I’ve photographed a ballerina in The Nutcracker, an incoming Gallaudet University president, a local county singer, and last month I was at Redskins Park photographing football player Reed Doughty, who just revealed his hearing loss this summer.

I’ve also met many HLAA members, such as our May/June cover girl, Abbie Cranmer, through our respective blogs. And there have been so many unexpected perks from the job as well. Barbara introduced me to HLAA member Mike Royer and his family, who appeared on our Walk4Hearing cover this spring. I had the privilege of photographing the birth of Mike and Alicia’s third child, Ashley Jocelyn, just last month. And recently I was offered the opportunity to photograph HLAA member Wayne Roorda’s cochlear implant surgery in November.

This magazine has morphed into more than I could have imagined. I have been challenged creatively and technically. And I have discovered I have a passionate desire to change, through my design and photography, the sometimes negative perception of people with hearing loss.

I have never let my hearing loss define me. It is part of my makeup but it is just a tiny part of who I am. And if I can inspire someone else with hearing loss to overcome their self-esteem issues and find their place in the world, then that’s just another reward from this amazing job.

THANK YOU
Thank you to Barbara Kelley and Brenda Battat for letting me run wild with my creativity and opening doors to a community of wonderful people who just happen to have hearing loss. I offer profound thanks to Barbara for her glowing nomination. And thank you to both Sara Coulter and Oticon, for your generosity, your hospitality, and for honoring me with this award.

__________________________________________________________________________________________

Oticon’s Focus on People 2008 first place winners with Peer Lauritsen, President of Oticon (fourth from left): Todd Landsberg, AuD of Eugene Speech and Hearing Center in Eugene, OR (Practitioner Category); Doug Wernke, M Ed of the South Dakota School for the Deaf in Rapid City, SD (Pediatric Practitioner Category); Cindy Dyer of Alexandria, VA (Adult Category); Peer Lauritsen; Lynn Rousseau of Gainesville, FL (Advocacy Category); and Mariella Paulino of the Bronx, NY (Student Category)





Getting my ducks in a row

29 10 2008

Okay, I know these are geese…but the expression isn’t “getting your geese in a row,” so I’m taking liberties here…simply because I can.

This weekend Michael and I were in Denver (actually, Englewood) for an awards ceremony held Saturday at The Inverness Hotel and Conference Center. I was nominated for a “Focus on People” award by my Hearing Loss Magazine editor, Barbara Kelley. There were five categories: Student, Adults, Advocate, Practitioner, and Pediatric Practitioner. I learned a little over two weeks ago that I was the grand prize winner in the Adult category. What an honor and a complete surprise!

Barbara interviewed me several months ago under the guise of writing an article about professionals with hearing loss. Little did I know she was actually filling out the nomination form for this award. I had received a package from Oticon earlier in the week and didn’t open it immediately since I thought it was just a copy of their already-in-place ad for the magazine we were ready to send to print. I felt the package, noted that it didn’t have a CD case in it, and assumed it was an ad insertion order. It sat on the coffee table for two days before Barbara suggested that I open it. That’s when the whirlwind began.

Before I knew it, we were booking reservations to attend the ceremony—airfare and accommodations courtesy of Oticon, the sponsor of the awards program. The Oticon representatives and staff were incredibly gracious, hospitable, and generous. I was a bit overwhelmed by the attention but happily soaking it in anyway.

Oticon was founded in 1904 in Denmark by Hans Demant, whose wife was hearing impaired. Oticon’s headquarters is in Denmark, with the U.S. headquarters in Somerset, New Jersey. Oticon produces many types of advanced digital hearing aids, some with artificial intelligence.

Friday night we attended a reception and dinner where I met Oticon’s PR person, Sara Coulter, who did a wonderful job of organizing the event and made us feel so welcome. The awards luncheon was Saturday at noon. We were each asked to give a brief acceptance speech, and although I am by nature not a shy person, I was incredibly nervous—embarassingly so. And, of course, I was first to give my acceptance speech (Murphy’s Law, you know). I had spent a couple of hours writing the speech the night before, rehearsing it to my audience of one (Michael), and having him time it over and over again so it didn’t turn into a recitation of War and Peace.

Despite all the rehearsal, I was a trembling bag of nerves at the podium. So when I mention I was a bit overwhelmed, that’s actually an understatement. Add the common fear of public speaking to the honor of the award in the first place, Barbara being so kind to nominate me, all the attention being showered, and being designated to go first—surely you have a recipe for potential disaster! I started out nervous and calmed down (if only a bit) as the clock ticked. I was followed by four very eloquent and moving speeches from my fellow award winners. I only wish I hadn’t been so nervous. Afterward, I thought of all the things I wish I had said. Isn’t that always the case? Do-over, do-over!

Each winner will receive $1,000 cash prize and Oticon will also donate $1,000 to the charity of our choice. All that and airfare, accommodations and wonderful meals! Without a doubt, this past weekend was an amazing one for my this-is-your-life book. I’ll post a photo shortly of all the award winners with the president of Oticon, Peer Lauritsen. Thank you, Barbara, for nominating me. And thank you, Oticon, for recognizing my work and honoring me with this award.

The photos below were shot just outside the hotel, near the golf course, after we had lunch in Baca, one of themed restaurants at The Inverness. Click here to view their video on how to make churros! The Inverness is a beautiful hotel with an excellent staff and it was such a treat to spend the weekend there. We rented a car late Saturday afternoon and spent the evening in downtown Denver, where we perused two of the three Tattered Cover Bookstores (Colfax Avenue and LoDo locations), and had dinner at The Old Spaghetti Factory. On Sunday we drove out to Rocky Mountain National Park, where we were giddy with excitement over the abundance of wildlife to photograph. We spent Monday morning stalking various Lepidoptera at the Butterfly Pavilion in Westminster before catching a flight back to D.C. in the evening.

Stay tuned for photos from our field trips!

© Cindy Dyer. All rights reserved.