Can The Hearing Lost Be Found?

Everywhere I go there are people with hearing loss, but they don’t want to be found. They will reveal once I do, but not before, and only to me — not more broadly. I find them at conferences, school events, lectures — always sitting up near the front, just like I do — but silent about the need for the speaker to use a microphone or to not turn his back to the audience. How can we change this mindset?

There are 50 million Americans with hearing loss, so it should not come as a surprise how often I meet other people with hearing loss. Whenever I mention my work as a hearing loss advocate, more often than not, someone will confess his own hearing loss or that of a relative or friend. This is usually done in a hushed tone with a glance or two around to see who might be listening, as if it were a secret. I understand, it used to be a secret for me too.

If hearing loss is so common, why do we still feel so lost?

1. Part of it is the stigma. There remains a stigma associated with hearing loss, more so than with mobility or other physical disabilities. Perhaps it is because hearing loss is often associated with aging. This is not actually the case, as according to Better Hearing Institute, 65% of people with hearing loss are below age 65, but the association remains. The stigma makes people reticent to disclose their hearing loss and to seek treatment in a timely manner.

2. Hearing loss is invisible. People with hearing loss don’t look a certain way. They are scattered throughout our neighborhoods and workplaces and probably spend most of their time with friends or family who don’t have hearing loss. That is why organizations like Hearing Loss Association of America are so important, because they help people with hearing loss find others in their local area coping with the same challenges. You can find a chapter near you here. Thanks to my local chapter, I now have several friends with hearing loss, who provide an incredible support network.

3. Hearing loss can be isolating. Sometimes people with hearing loss choose to withdraw rather than deal with the frustrations of communicating. This does not have to be the case! By alerting others to your hearing loss and utilizing best practice communication tips, people with hearing loss can enjoy a robust life filled with activities and social events. It takes extra work, but it is worth it.

4. The broader hearing loss community is not as united as it could be. Much strife exists among the various segments of the hearing loss community, particularly as it relates to the proper treatment of children born with hearing loss. The arguing between groups is frustrating and counterproductive. A more united front would be beneficial in so many ways — greater feelings of inclusion, a stronger voice with lawmakers to support advocacy projects like captioning, and better access for all.

Readers, how can we help the hearing lost be found?

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17 thoughts on “Can The Hearing Lost Be Found?

  1. Susan Berger – Blogging is one big experiment for me. Will it work? Who knows. I'll link websites that have published my essays and maybe I'll write original posts. My topics will be observations, points of view and life as I see it. I'm still marinating...
    Berger's Blather says:

    I notice that even when I explain my issue and what I need, it’s hard for healthy hearing folks to keep up the accommodation ie: turning to me when speaking etc. So then it becomes an annoyance for both me and the other person to constantly remind and be reminded. I get it—it’s tiring to be mindful on a regular basis.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      It is a challenge, but gentle reminders can help somewhat. Thanks for sharing your thoughts.

  2. Jerry Henderson – Pownal Maine – Thank you for coming to my space. This is where I post thoughts, opinions and commentary on a variety of subjects at irregular intervals. I try to do something weekly, but have not nailed down a rigid schedule, like every Wednesday, yet. If you would like email notifications of new posts, you can make that happen right on the site. Simply enter your email address to subscribe. Also, if you would like to comment I welcome that. Just do so in the space at the bottom of any selected post. Sharing thoughts, opinion and commentary is a peculiarly human characteristic. It must be exercised to be enjoyed. Jerry Henderson
    Jerry says:

    @Berger’s Blather: You are so right. Anyone will agree to accommodate your needs but I doubt anyone takes into consideration the long term behavioral changes that are required. If you are being treated for hearing loss you are into a life-long commitment. If your partner has normal hearing they are also along for the life-long ride. All those people at the party you are going to are glad to see you but have not been briefed on what you need if they want you to understand what they say. I went to such a party where the host, my friend, announced to the room that I was hearing impaired and what they needed to do to communicate successfully with me. It worked for 5 minutes then it was business as usual. It was not malicious. Just unusual and hard to stay “mindful” as you have so well said. Our need is to be patient but vocal. Letting it slide won’t do anybody any good.

    My recent cochlear implant is like a flag waiving in the wind. It gets a little attention. I’m the first recipient most of my friends have ever seen. I’ve heard: “I didn’t know your hearing was that bad” – and I’ve been deaf as a stump for most of the 20 years I have worn HAs!

    I was at a gathering of old friends this past week. The room was full and everyone was talking. I did quite well most of the time but at that point I was becoming tired so I drifted over to where an old friend was sitting and as I slid in next to him I said, “Bruce, I can’t understand a thing”. He looked at me and said, “Neither can I”. I was surprised and told him he needed to treat his hearing loss the sooner the better. I intend to keep at it for his sake.

    Shari – as you have said: these people are all around us. Just as we need for others to be sensitive to our needs, we must be sensitive of those who are telling us by their behavior that they have unannounced hearing loss. Who better prepared for this kind of advocacy than we are who suffer serious hearing loss?

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      Great points! We are the most prepared to encourage others to come clean and get help.

  3. When first wearing my Baha (I’m SSD) I would kind of tuck it under my very short hair so it would blend in. Who was I kidding? After a well meaning gentleman told my my hearing aid was falling off I decided it was time to come out of the hearing loss closet and start advocating. I’ve even been known now to wear a seasonal sticker on it just for fun. Now the unsuspecting folk who ask what that thing is on my head get a mini-lecture on hearing loss – probably more than they counted on. It has also opened up a whole new dialog with most people, many of whom admit to their own loss or need help for a “friend” or family member. I wholeheartedly agree – we who have been kind of suffering in “silence” now need to be the ones making the right kind of noise.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      Good for you! Well done.

  4. Chelle – Me? Mother, lover, grandma, aunt, daughter, friend and co-worker. Skier, traveler, worker, dancer when it happens, cat lady, writer (I hope) and smiler. Positive, able, going deaf, fun, loving and free.
    Chelle says:

    Good post! We need a more united front. The more of us who advocate and talk about hearing loss the better. If more of us asked for accommodations (personal and public) the more people would be educated. The more people educated, the better it will get and then! The more our needs will be met. Let’s make it a common every day practice to break out of our box! Afraid? So was I but with a little practice not so anymore.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      Well said. Thanks Chelle.

  5. universetime4319 – <!-- wp:paragraph --> My name is Justin Klein-Edgerton. I am a 30-year-old deaf man residing for now in Phoenix, Arizona. I grew up all my life in California. There was a question that one psychology professor asked me that I would never forget. He said that there must be one unique, interesting statement about us that define our life. He asked us to give that statement when introducing myself. I thought long and hard when he mentioned it. He only requested that we do not explain until if there was anyone who wants to know more, to ask after class. I did not want to mention my birth situation or talk about it, but after some thinking, it always comes back to that one thought. I felt that I could not not mentioned it at all. When it was my turn, I said my name and I said, "My life was changed forever before it even started." He looked at me perplexed. "I am sorry, I never heard anyone said that before. Can you elaborate?" knowing that he broke his own rule. I hesitated. Other people wanted to know. <!-- /wp:paragraph --> <!-- wp:paragraph --> There is a long version that I want to make it a memoir someday. In order to do that, I need to be known by people around me, make connections, and build up my reputation positive. The past few years in my 20s were not something I was proud of doing. I aim to change that; to be a better person. For now, I decided to write a blog about my thoughts, my experiences, short stories that inspire me in those moments, etc. I want you, the reader, to help me improve to be a better writer by giving good criticism, feedbacks, compliments, advice, comments, etc., and that I would want to share what was on my mind and stories I had in my head to the world. With your help, I can achieve my goal of writing that memoir someday. This blog would have a theme of inspiration and adoption. I already had a thought about a young adult novel related to adoption that I hope to start the process soon. For now, I am excited to start on this journey with you. <!-- /wp:paragraph -->
    Justin says:

    Have any of you heard about sign language? Interpreters? Deaf culture? Use them as accommodations. Sometimes what we lost is gained in so many other ways. Nyle Dimarcos proved that. So many Deaf actors, lawyers, and teachers proved that. There are more professions by Deaf people that people need to know about. I did lost my hearing but I gain Deafness as my reward.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      I am glad you have found something that works for you. We all need to find our way as it makes sense for each of us. This way may vary person to person and that is ok. For me, sign language doesn’t work as well since neither I or any of my family members know it.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      Thank you so much for your kind words and the support!

  6. Sure I know, Justin – and feel as you. I don’t avoid telling people I’m hoh and I will sign as I can with whoever. Doesn’t matter that my family doesn’t sign. There’s no “suffering” here. No health issue. I’m just me.

  7. SonoLab Ltd – Norfolk – The team at SonoLab Limited is dedicated to eradicating noise-induced hearing loss. SonoLab instant fit custom moulded ear plugs offer effective, efficient and simple solutions to protect those who work with high levels of noise pollution in the workplace. A global brand, SonoLab is leading the world into the next generation of hearing protection. At Sonolab, we care about protecting your hearing, and believe it is our responsibility to eradicate hearing loss from noise exposure. We have earned our solid reputation by developing, building and delivering great products and services. Our noise attenuation testing service means we can document and provide evidence that the ear plugs are working and protecting both employee and employer. For more information on ear protection, simply give us a call today on 0 1553 819599 or email us on contact@sonolab.com
    Kevin Carvell says:

    Great post, it is interesting to read people’s experience with hearing loss. I recently read that 7% of European employees have hearing impairment due to occupational noise and also 35 million Americans have some form of hearing loss – this is such a big amount of the population. It is important to try and prevent this before the hearing loss happens. While we work with people who work in noisy workplaces, there are many other ways hearing can be affected too, from every day life to medical reasons.

    1. Shari Eberts – NYC – Shari Eberts is a passionate hearing health advocate and internationally recognized author and speaker on hearing loss issues. She is the founder of LivingWithHearingLoss.com, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
      Living With Hearing Loss says:

      Great points. Thanks for your comment.

  8. onewomanschoice – Author of One Woman's Choice I'm a single mom and a birth mom to two sons who are multiracial. I'm analytical, creative, spiritual, and New Age all rolled up into one. I have a passion for researching and volunteering.
    onewomanschoice says:

    Reblogged this on One Woman's Choice.

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