United by Hearing Loss in Rochester, NY

By Lauren McGrath

Hearing Health Foundation (HHF) proudly attended the 40th annual Hearing Loss Association of America (HLAA) convention last week in Rochester, NY. Rochester, fittingly, is the U.S. city with the highest per capita deaf population and a vibrant hub for hearing loss accessibility.

HHF CEO Timothy Higdon and Director of Marketing and Communications Lauren McGrath were present at the city’s Joseph A. Floreano Riverside Convention Center to speak with thousands of individuals about the significance of hearing loss research and education.

The conference began with a keynote speech from psychotherapist and author Rebecca Alexander, who lives with Usher syndrome and has partnered with HHF Board member Sophia Boccard to raise awareness of the condition. Alexander cited her cochlear implants as a vital tool hat “helped her reconnect with life.” She also reminded the audience of the importance of requesting assistance. “Why are we so averse to asking people for help?” she inquired, reminding her listeners that no one can read our minds when we face difficulties with hearing, vision, or balance.

CEO Timothy Higdon and Director of Marketing & Communications Lauren McGrath at HHF’s booth in the exhibit hall.

CEO Timothy Higdon and Director of Marketing & Communications Lauren McGrath at HHF’s booth in the exhibit hall.

Chief of the Laboratory of Molecular Genetics at the National Institute on Deafness and Other Communication Disorders, Thomas Friedman, Ph.D., who was funded by HHF’s Emerging Research Grants (ERG) program in 1994 and 1995, introduced the conference’s research symposium on genetics and hearing loss. There are 142 genes known to be associated with deafness, and animal models (mice, zebrafish, and fruit flies) are essential to providing such evidence. 

Zheng-Yi Chen, Ph.D. (Mass. Eye and Ear; 1994 ERG), Patricia White, Ph.D. (University of Rochester School of Medicine; 1999 and 2001 ERG), and Hela Azaiez, Ph.D. (University of Iowa), provided supplementary insights about genetic hearing loss and the possibilities for treatment. Further research updates about hereditary deafness will be available in the Summer 2019 issue of Hearing Health in late July. 

In the exhibit hall, HHF had the opportunity to speak to individuals with hearing loss interested to learn about new advances in research, including exactly how a chicken is connected to potential cures for hearing loss and tinnitus. At neighboring booths, HHF met with representatives from like-minded nonprofit organizations and hearing loss technology providers.

Beyond the exhibit hall, guests participated in workshops focused on self-efficacy, hearing devices, assistive technology, health insurance, and safe travel, among other topics.

The convention buzzed with curiosity, knowledge and compassion. As always, HHF is grateful to HLAA for uniting many of the nation’s most dedicated hearing loss advocates in a valuable three-day experience.

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Hearing Loss Is My Superpower

By Frank Barnes III

Teen angst may be a rite of passage for everyone, but for me it was amplified, if you’ll pardon the pun. Despite receiving a cochlear implant at age 22 months, and being mainstreamed into my local public school district from kindergarten, by late middle school into high school I had became bitter and resentful about my dependence on hearing technology. I saw it as a burden.

Angry and frustrated, I felt self-conscious about the external sound processor on my head, believing it was all that people knew and judged about me. By wearing a hearing assistive device, I thought that I was broadcasting, “I need assistance.” I felt incompetent and incapable, and to show that I didn’t need it, I didn’t wear it to my eighth grade graduation party and kept removing it during freshman year of high school. I felt like not leaning into the hearing loss was a better choice for me.

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This meant I also had no interest in actively seeking out the hearing loss community, and instead passively rejected it, not out of any sense of malice but just because it didn’t feel like somewhere I needed to be. I consistently resisted any nudges from my parents to connect with people with hearing loss who also wore cochlear implants.

It may not surprise you to hear that this only sunk me lower, affecting not only my self-esteem but also what had been my high honors/academic excellence, athletic performance, and social relationships.

Age 22 Months

I have a profound hearing loss in both ears, which resulted from bacterial meningitis. My parents first noticed my hearing loss when I was 18 months old. At age 22 months I received a cochlear implant in my right ear. That it was a mere four-month window between the first signs and diagnosis of my hearing loss until implantation is a remarkable tribute to the commitment and efforts of my parents and the professionals all focused on finding the best solution for me and my family. My surgeon was the late John Niparko, M.D., of Johns Hopkins University, a true leader in the field. At the time in 1997 unilateral implantation was the protocol; I don’t use anything in my left ear.

As a toddler, I attended Summit Speech School in New Providence, New Jersey, to develop my speech, auditory, and social skills, and was able to be mainstreamed into the local public schools starting in kindergarten. I was sent to school with a boxy FM receiver that I had to use throughout the day in order to function with my typical-hearing classmates and teachers.

It’s a big responsibility for a kid, from age 6 and up, already struggling to pay attention to the teacher and socialize with other kids, to also have to change an FM box’s batteries and make sure it doesn’t break or get wet. Over time, I resented having to use it and just stopped in ninth grade—not because I was bullied but because I felt like I didn’t need it.

It was during this period of self-isolation from the hearing loss and cochlear implant community when an invitation for a reunion at Summit arrived. Of course I did not want to attend. But at the prodding of my parents, I did go. And that’s where and when I had my epiphany.

Back at Summit, I found myself surrounded by other alumni—all of us now teens and young adults—who shared their stories of living full lives. Listening to them speak, I saw they were each succeeding in school and prospering in the world—while wearing the same hearing devices that I wore. It was an eye-opening experience, one that planted the seed of-self acceptance that would slowly blossom to change everything for me.

Hearing their experiences, I realized, all of a sudden, that my hearing condition in fact gave me a foundation to achieve any goal and to become successful despite the loss of one of my senses. Everyone in that room reminded me of where I have been, and how we all have similar conditions and struggles. I saw the staff, who to this day are still there teaching and educating and loving and supporting—and the positive effects this has had on all of the alumni. I realized I had distanced myself from the very people, teachers and students alike, who made me who I am today.  

Age 22 Years

During college at Stony Brook University in New York, I did an academic year “abroad”—I was not overseas physically but “traveled” emotionally. I attended California State University, Northridge, and developed friendships with D/deaf students, which helped me gain confidence about wearing my external sound processor in new environments. I met people whose experiences nearly mirrored mine, which made me feel empowered and a part of the community.

I also took classes in D/deaf studies: American Sign Language and the hearing sciences (audiology coursework). When I learned about the anatomical framework of the ear/body relationship, I had a newfound appreciation for the astonishing technological capability of cochlear implants and profound work of audiologists and hearing specialists.

I graduated last spring with a degree in the health sciences, and landed a dream job in the field of immersive technologies, or virtual reality. My company crafts shared VR environments that are visualization and simulation experiences. I wear many hats at the company, working in production, delivery, marketing, and business development, and on project management teams.

The immersive experience is a balance of the visual and the auditory. Given my hearing loss, the visual energy that I get from working in 360° VR media has provided some sensory relief! While the case studies that I've reviewed have not been directly related to disabilities, the company's technology actively transforms emotive storytelling media into greater awareness and empathy, making it a remarkable fit for delivering impactful stories of struggle and triumph.

More than during any other point in my life, I became fully connected to the hearing loss community on the journey toward embracing my hearing loss. Advanced Bionics, the maker of my cochlear implant and Harmony behind-the-ear processor, invited me to share my experiences in New York City and then speak at their headquarters in California. At a Bionic Ear Association meeting in New Jersey, with other CI recipients and their families, I felt grateful to be able to relay words of calm and hope to parents uncertain about post-procedure changes for their child and family.

I have given speeches at, and recently became a trustee of, the Hearing Loss Association of America (HLAA)’s New Jersey chapter, through which I had earned a scholarship in high school. I joined the HLAA’s Walk4Hearing fundraising event and met with legislators in Trenton, New Jersey’s capital, to be present for the Assembly Committee on Education, Science, and Technology because they were voting on Bill 1896, the Deaf Student's Bill of Rights.

The many facets of hearing loss—education, advocacy, empathy, awareness—all have become priorities for me.

Knowing When You Need Support

It’s crazy that I used to think I could succeed without the hearing loss community. They have my back and are forever my tribe. Having a community means you will work together to be your best self for one another. My parents knew how to ask for help, but it took me a little longer to realize the importance of being vulnerable and asking for assistance—and then being able to pay it forward by helping others.

In 5th grade, when I was about 10, I was playing soccer toward the end of the day, with the daylight waning, when the unthinkable happened: I lost my headpiece. No processor, no hearing. I was in the middle of the field, trying to figure out what to do, feeling frustrated and anxious. My soccer coach came over and asked, “What happened?”

I read his lips to know what he was asking, and he explained that the team had to ask more questions to help me find it: “What does it look like? If you don't find it, what will you do? And, how are you?” Which I felt like was a weird question because they wanted to know if I was upset—and I said, yes!

But what they said to me next was, “What can we do to make you feel better?” I really appreciated that they didn’t say “you should” or “you’d better”—they weren't saying hearing loss was a barrier. It was more that they were saying how can we make you feel better, as a person.

We stood in a long line horizontally to cover the field, and slowly stepped across the dirt together, scanning the ground. Amazingly, we found it! I had told myself that if I didn't find it, it would be okay. But everyone else said, “No, we will find this! This is a part of who you are, this is what you need, we’re here for you.” They were saying to me that this is a part of your identity and let's make sure you go home, whole. The team came together for me.

In Turn, Helping Others

Something I had not paid any attention to as a kid is the behind-the-scenes work, the village of hearing healthcare professionals and other experts who work together to create the churning machine that says, “Here are the resources, here are the services so that these kids can succeed.”

I can’t overstate the value of Facebook groups that keep me connected to the community of cochlear implant users, people who have upcoming surgeries or family or friends who do. Get connected through online communities, word of mouth, or introductions by your audiologist or CI manufacturer.

True, I say this like it’s super-easy to send a message to a complete stranger! But I am highly confident that any person with a new diagnosis of hearing loss while find an outpouring of support and friendship from these connections, and will be uplifted and less unnerved after speaking, meeting, and bonding with the vibrant, full-of-life people across the hearing loss spectrum.

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I thoroughly enjoy being a working professional, advocate, and public speaker. In speeches I’ve made to the hearing loss community, I am candid about how I had not realized the value of their community, how I did not want to accept being different. Often people react with surprise or even dismay, but I usually see a few people who are nodding in agreement that we need to share how there are daily struggles and doubts, and that not everything is easy or cheery all the time.

Our journeys must take a measure of self-acceptance about being different, whether we use a cochlear implant, hearing aid, or sign language. Being different from the hearing society is the best thing that I've ever experienced. From the vantage point of my advanced age of 22, I can now see that in your tweens and teens you want to just be like everyone else. It is not until later that you realize that being different, that standing out, is in fact great! My hearing loss is my superpower.

This article originally appeared in the Spring 2019 issue of Hearing Health magazine. Frank is also a participant in HHF’s Faces of Hearing Loss project.

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HHF Attends HLAA 2018 Convention

By Nadine Dehgan

I was fortunate to attend my very first Hearing Loss Association of America (HLAA) Convention last week in Minneapolis, MN with Hearing Health Foundation (HHF)’s Program Associate, Maria Bibi.

Nadine Dehgan and Maria Bibi at HLAA 2018.

Nadine Dehgan and Maria Bibi at HLAA 2018.

We spent much of our time serving as resources to the highly engaged attendees. In the exhibit hall at our HHF booth, we answered questions related to our critical research and awareness programming. Maria and I were humbled to learn of the deep appreciation for our work from our booth’s visitors.

Several educational sessions were held beyond the exhibit hall. I was particularly grateful to witness John Brigande, Ph.D., and Ronna Hertzano, M.D., Ph.D., speak about HHF’s Hearing Restoration Project (HRP), the international scientific consortium dedicated to identifying better treatments and cures for hearing loss and tinnitus. Here, I met a supporter of HHF, who said, “[Drs. Brigande and Hertzano] were both informative, encouraging, and enthusiastic about their work and the possible outcomes. I will continue to follow their progress even more closely now.”

HHF Emerging Research Grants (ERG) 2018 recipient Evelyn Davies Venn, Au.D, Ph.D, also delivered a compelling presentation. An Assistant Professor at the University of Minnesota, Dr. Venn’s research focuses on a highly personalized hearing technology to help individuals better understand speech in noise. She discussed a new hearing aid in concept phase that will convert the sense of touch into sound electricity.

A shift from typical days in our quiet New York City office, the four-day convention connected us with many inspirational people—folks with hearing loss and scientists alike. Buzzing with energy, optimism, and knowledge about hearing loss, the convention was an important representation of how HHF’s work impacts so many individuals.

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Let's Get Looped!

By Yishane Lee

We’re talking about hearing loop systems, of course. As writer Elizabeth Stump describes in “Keeping You in the Loop,” in our new Spring issue of Hearing Health magazine, hearing loop systems deliver clear sound—free from background noise, echo, or distortion—directly into hearing aids that are equipped with telecoils (T-coils). About two-thirds of hearing aids have T-coils, and hearing loop systems are available at a growing number of public venues, ranging from churches and other places of worship to New York City taxis to auditorium ticket booths.

But hearing loop system advocates think we can do better. Here is advice from Juliëtte Sterkens, Au.D., the consumer and hearing loop advocate for the Hearing Loss Association of America (HLAA) and a member of the National HLAA/American Academy of Audiology Hearing Loop Task Force.

What are your recommendations to others on how to advocate successfully for looping systems in their community?

I usually make a phone call or a pay a visit and explain why people with hearing loss (even if they use hearing aids or cochlear implants) have trouble hearing. Most facilities are unaware of the difficulties people with hearing loss experience—it is my experience that they want to help. During the visit I often play parts of sound demos in and out of hearing loops. These sound demos can be eye—or should I say ear—opening?

I have also let some of the responses from hearing loop users help me in the process. Many comments can be found online, such as at LoopWisconsin.com.

Advocating is made easier if I know that a facility will soon be undergoing remodeling because the installation of the loop wire is usually easier and less expensive if completed when the carpeting is going to be replaced anyway.

If cost is going to be of concern, I will offer information as to how other venues have handled this. For example, there are grant monies available for some venues (libraries, some houses of worship), and many communities have a community foundation is interested in knowing what can be done to improve access.  

For example in Oshkosh, Wis., the community foundation was helping to fund a remodel of the Oshkosh Convention Center in the fall of 2008. I made a couple of phone calls and sent a letter with information to the executive director. The result was they helped fund two hearing loops at the convention center about two weeks before the carpeting was to be laid down. 

The executive director believed me when I told her that having a hearing loop at the convention center would convince other venues to do the same. Oshkosh now has more than 40 hearing loops including its 100-plus-year-old Grand Opera House, a funeral home, several retirement communities, a court room, and a new conference center at University of Wisconsin Oshkosh.

To increase attention to a need, I have found that a letter to the editor of a newspaper can be of tremendous help—and the best part is that this is free!

There is strength in numbers: If you are advocating for improved access ask a friend or family member or a hearing professional to write a short letter of support as well.  

The last resort would be playing the ADA card (Americans with Disability Act). The ADA mandates that facilities offer assistive technology. If a facility is unwilling one could file a complaint with the Department of Justice.

The HLAA has more tips to help you advocate for loops in your community, and we have additional links including looped spaces at hhf.org/loops.

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All About Assistive Listening DevicesAll About Assistive Listening Devices

By Yishane Lee

Assistive listening devices, or ALDs, are an especially handy type of device for people with hearing loss. While you don’t need hearing test results or a doctor’s visit to use them, the category is so broad and diverse—alarms, amplifiers, FM systems, loops, and phones, among others—that it helps to have someone who knows them well to help you figure out which ones can help you the most.

To this end we are introducing a new column in Hearing Health magazine. In the Winter 2014 issue, writer George Khal presents the first “Assistive Advice” column. Khal is the founder and former president of Sound Clarity, an international retail company specializing in ALDs. He has had a severe bilateral hearing loss since early adulthood. We spoke with him about the inspiration for the column and company, as well as his go-to ALDs.

What is your inspiration for “Assistive Advice”?

There is a need to provide unbiased information to consumers by helping them understand how ALDs can help them in their personal and professional lives, and I hope to help other consumers through sharing my knowledge from personal and professional experiences.

I had noticed consumers were aware of hearing aids but often unaware of ALDs, and that hearing healthcare professionals often did not promote ALDs. I feel that many consumers want to learn more about these devices but that it is not readily available in a format they could understand. I hope to be able to remedy that situation.

In addition, I feel that many consumers are unaware of the implications of the Americans with Disabilities Act (ADA) and of State Telecommunications Access programs.

How did Sound Clarity come to be created?

In 1999 I was contemplating a career change from information technology. I was also advising the University of Iowa on how to make its facilities hearing accessible, in order to comply with the ADA. My ALD experience at that time was leading the Hearing Loss Association of America (HLAA) support groups throughout Iowa and working with audiologists from the Speech and Hearing Center in Iowa City to connect people with hearing loss to our local group.  

Over years of leading our local HLAA chapter, I came into contact with people who were hungry for information that can help their daily lives, since hearing aids were not enough for many of them. Using parts from local electronics stores I also had built some of my own ALDs—an FM system, personal amplifiers, and neck loops—and was aware of how many of the devices worked.

After attending HLAA conventions as a consumer, it made me realize that my knowledge of the technology combined with my IT background gave me skills to start Sound Clarity. After founding the company, I was the president for a decade, till 2010.

What are the ALDs you are never without or that you use daily?

The T-coil (telecoil) is the ALD I use the most. I use it when I talk on the telephone or watch television. I also use an audio loop mostly when I watch television. When driving I use a wireless Bluetooth neck loop with my cell phone. I rely on a vibrating alarm clock to wake up in the morning—it’s especially necessary when I am home alone. Just as important is the visual smoke alarm, with a strobe light, that gives me peace of mind. And although not an ALD, a hearing aid dryer is a device I use daily to keep my hearing aids clean and free of moisture.

We hope you enjoy the debut “Assistive Advice” column!

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