hearing health magazine

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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Enter the Caption Challenge

By Lauren McGrath

Captions and subtitles are a critical tool that makes information more accessible to those with hearing loss.

The technology is constantly evolving, especially real-time captioning that can be available on the go, often using smartphones.

The 1990 Americans with Disabilities Act requires businesses and public venues to guarantee that people with hearing loss are not excluded from or denied services because of the lack of auxiliary aids, and this includes captioning.

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But sometimes the subtitles fall short, creating unintentionally funny gaffes that can end up going viral.

Without intending any criticism of this important accessibility method, which is so helpful for those with (and without) hearing loss to better understand speech, we are launching a fun contest— because everyone loves bloopers, and it’s a good reminder that captioning has actually improved by leaps and bounds.

Submit an original photo or screenshot of a memorable caption flub, and earn a chance to be featured in the Spring 2019 issue of Hearing Health and on our website.

The deadline has been extended! Visit hhf.org/challenge to review the full contest rules and to enter. Submissions will be accepted until Friday, May 15.

 
 

Note: The contest is open to all individuals 18 years and older who subscribe to Hearing Health magazine via print (in the U.S.) or online (outside of the U.S.). Nonsubscribers are not be eligible for participation and any submission from a nonsubscriber will not be considered. To subscribe to the free quarterly, visit hhf.org/subscribe.

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