Soon I had another event to attend, a breakfast in a huge room on the 32^nd floor of a building, with floor to ceiling windows revealing a spectacular view of downtown Cleveland. The ceiling was wooden with exposed air conditioner ducts, not a new idea but not the best acoustical feature. Once again, a kind friend put our table near the front, and I was able to hear a lot. Had I been in the back, in that room with 300 people, I would have heard nothing. As it was, the “networking” that was supposed to happen was only possible for people who got within 2 feet of each other. It was impossible for me, so I politely informed the new acquaintance sitting to my right that I would not be able to chat. I felt flattened when I got home.

Listening fatigue is real because I feel it in my bones. It’s also real because the American Academy of Audiology says so. Persons with hearing loss shift “cognitive resources,” usually used elsewhere in the brain, to listening effort (LE). The brain works harder, “causing stress and finally fatigue.” The Academy website says that hearing people normally don’t feel this fatigue. I’ve heard otherwise from hearing people and some researchers refer to listening fatigue among hearing persons in their research papers.

Researchers are on the quest for a definitive definition of listening fatigue (LF). A perusal of the research literature expanded my understanding of the questions that surround it, and there are many. What is fatigue anyway? When do external circumstances trigger fatigue? Is listening the same for everyone? Does it make a difference if I’m motivated to listen or indifferent to what’s being said? In other words, does the degree of listening effort (LE) make a difference? And what about listening related fatigue, which sometimes means longer term fatigue and sometimes simply means (to the researcher) regular listening fatigue. I’ve paused with a boggled mind.

The usual conversation about listening fatigue among people with hearing loss is about using one’s brain to hear what one wants to hear. Our brains are working hard, harder than for hearing people, to hear and to read lips (often now, for some reason, called speech reading). Some scientists are focused on hard of hearing children’s listening fatigue and how to mitigate it to keep the children from falling behind in school. I’m encouraged by this concern and hope that they find ways to get around children’s fatigue.

The American Academy of Audiology recommends several ways to reduce listening fatigue. Here are their recommendations verbatim.

· Have your hearing professionally evaluated

· The use of appropriate clinically fit hearing aids may reduce listening effort and susceptibility to mental fatigue

· Use your hearing aids or other hearing devices during all your working hours

· Reduce the background noise in your environment or employ specific communication strategies to reduce the effects of background noise.

· Have quiet time during the day. i.e. reading instead of watching TV[i]

I would add “Try to recognize every time you have it.” It may well be different for everyone. There seems to be agreement that people with hearing loss who use hearing aids experience less listening fatigue. Some researchers have found that effortful listening may be less fatiguing for individuals with hearing loss. If you are very interested in what is being said (or being rewarded for listening) and thus listening closely, you may experience less fatigue than you would if you were listening to something you deem uninteresting or less worthwhile. This seems counterintuitive to me.

For me, listening fatigue seems to be cumulative. After a day of noisy situations and engagement with a lot of people, I can feel myself fade. TV doesn’t seem to have that effect on me, maybe because I use closed captioning. Likewise, in movies I use a portable captioning device. Dinner afterward with friends, though, can do me in.

In the fall and winter, we usually have neighbors over to watch football on Sunday afternoons. I am very happy to see my friends, but I do get listening fatigue. Linda Fowler, whom I interviewed a while back, gives talks at health fairs about hearing loss throughout Ohio. She expects and gets listening fatigue. “Just listening is exhausting,” she says. “By the time I come home I take out my hearing aids, pour a glass of wine and just sit there.” Although some people with cochlear implants report less exhaustion than they had with hearing aids, people who use either hearing aids or cochlear implants reportedly need more time than others to recover. But Linda doesn’t go to her book club anymore. It’s too much. “I love the women, but they all talk at the same time and although someone may say ‘Linda can’t hear,’ they don’t change. My blood pressure goes up. So, I stopped going.”

Speaking for myself, I can no longer spend a day conversing or just listening. When I do, because I must, I begin to tune people out. I feel as though my hearing aids are failing me but realize that I’m just tired and have unconsciously stopped listening. Other than the football company, my way of coping is not to plan for myself too many “peopled” events in one day, including phone calls. A friend who has a disability that is different from mine also reports exhaustion from being with people. She attributes it to the strain of being in a marginalized group outside of the dominant culture.

If you care to comment, I would love to hear about your experience with listening fatigue.

Resources

NOTE: As a retired academic, I can tap into my university’s digital library to find articles of interest. You may or may not be able to access the following articles. Googling them might, though, give you the piece.

Bellavia, Anderew. Direct-to-Ear Audio Streaming Can Improve Accessibility and Well-Being. Assistive Technologies, Hearing Aids. The Hearing Review, Jan. 28, 2026. NOTE: Bellavia is a consultant in the hearing health industry.

Blumer, M, Heeren, J, Mirkov, B, et al., The Impact of Hearing Aids on Listening Effort and Listening-Related Fatigue – Investigations in a Virtual Realistic Listening Environment. Trends in Hearing, v. 28; 1-22.

Holman, J A, Drummond, A, & Naylor, G. Hearing Aids Reduce Daily-Life Fatigue and Increase Social Activity: A Longitudinal Study. Trends in Hearing, V25: 1-12. 2021.

Jiang K, Spira, A P, Lin F R, Deal, J A, Reed, N S. Hearing loss and fatigue in middle-aged and older adults. Journal of the American Medical Society Otolaryngol Head & Neck Surgery. 2023 Aug 1;149 (8): 758-760.

McGarrigle, R, Knight, S, Rakusen, L, and Mattys, S. Mood Shapes the Impact of reward on perceived fatigue from listening. Quarterly Journal of Experiential Psychology, Vol. 77(12),2463-2475. 2024.

Strasser, E, Brand, T, & Rennies, J. The Relation Between Sustained Listening Under Difficult Conditions and Behavioral, Subjective, and Physiological Indicators of Fatigue. Trends in Hearing, v. 30:1-11. 2026.

[i] Listening Fatigue, American Academy of Audiology: https://www.audiology.org/consumers-and-patients/hearing-and-balance

By any account, Helen would seem to be the “ideal” hearing aid user (assuming there is one, of course). She could afford aids and was eager to use them and learn about them. Helen brought curiosity and analysis to her hearing loss and hearing aids. “I was so naïve,” Helen remarked. “I thought that it [getting aids] was going to make it a lot better. It just helped. I started to understand the process of an aid and how it could help you.” Helen reports, “My pathway has been “zig zaggy” and I’ve begun to understand my process. I’m exploring how to better interact with the environment and trying out different brands of hearing aids.”

Even though Helen Treen’s hearing had improved with her new hearing aids, her boss, who suggested she get aids in the first place, questioned her when she didn’t hear whispering very well. “Not a good thing, especially if you’re a development officer,” Helen said. Instant communication, especially in whispering mode, can be difficult and often impossible. Bluffing in those moments can be particularly dangerous as whispers often convey secretive importance. Picture a boss whispering “Introduce yourself to Mrs. Jones over there in the gray suit” and you think he said, “Introduce yourself to Mrs. Johnston over there in the grey suit.” Not good. And there were other hurdles.

Helen found that trying to make things better can be difficult. She remarked “When you ask people to speak slower it’s like your IQ drops 30 points or something. People unknowingly decide that you’re just not that bright because of it.” As a result, Helen doesn’t always reveal her hearing loss in a professional situation. “A need-to-know is the way I handle it… It’s a lot like telling people about your dietary issues when you won’t be eating with them very often. I’m not ashamed of it, but I don’t want to make it my frontline story.” Helen also finds it frustrating that other professionals seem to think she isn’t trying hard enough. “It’s not like I can totally fix it. If will and intent were good enough, I’d be there.” And then there’s her home life.

Helen Treen’s husband did not understand her hearing loss issues until he heard Rush Limbaugh talk about his on the radio. Helen was not a fan of right-wing commentator Limbaugh, but her husband was. Until Limbaugh discussed his own hearing loss, Hellen’s husband minimized it. She remarked:

“Where he had a breakthrough about me was when Rush talked about his own hearing loss. His was fast and sudden and he was able to tell his story compellingly. Rush’s story completely flipped my husband into understanding what I must be dealing with—why I would come home from a new situation and be exhausted—getting used to the cadences, the different voices, and the way people speak. He finally got it. I must be thankful to Rush. He told a good story and gave examples of how he was conducting programs when he was essentially deaf.”

Limbaugh, who died of lung cancer in 2021, eventually got a cochlear implant.

Some childhood school memories of a mainstream class are painful for Marianne Moore, who has experienced hearing loss since birth. She had recently retired from a career in nursing when I interviewed her. In her elementary school, children played a game called “whisper down the alley.” “I felt excluded and unable to play the game,” she said. “It would have been helpful for someone to tell me to ‘make up something’ which was the point of the game. I tried to faithfully whisper what I thought I heard—psst kind of sounds. A little bit of adult support would have been helpful in that.” By this time in her life, Marianne was wearing hearing aids, and in those days that meant that her aids were attached to a box that was hung from her neck. Her teachers knew she had a hearing loss but didn’t think to help her when she tried to play the game.

In a high school biology class, the teacher insisted upon putting Marianne in the back of the room with the other smart kids despite being asked to put her in the front of the class where she could hear better. She says, “It was fortuitous that I couldn’t bend the rules but still could be successful.” She loved biology and did well anyway. Hers was an individual success story, but it could have been quite different for someone lacking an aptitude for science.

Retired engineer John Backus described his parents as “old-school” Europeans, the same way 38-year-old Kim Ingersol described her father. Simply put, they didn’t believe that their children had hearing loss, which manifested in each of them at an early age. John’s mother said it was “all in his head.” The age difference and economic circumstances between John and Kim seem to have made a difference in their lives. John’s parents and most of his teachers denied or ignored the reality of his hearing loss. He was “wild” in the classroom, running around when the other children were seated to hear the teacher read to them. Finally, a teacher recommended that he get hearing aids, but they didn’t help entirely. His mother would get frustrated and angry, calling him retarded. She said that his problem could be solved by speaking louder, but it didn’t work.

John asked a lot of questions when he didn’t entirely hear something. When his IQ test scores indicated that he was not retarded, things got worse then, because, according to his mother, then there was no reason for his questions. She still said, “Stop acting retarded.” He was often punished for his childish behavior. He says that fighting back with his parents “was the only way I knew how to defend what self-esteem and dignity I was trying to develop and hang on to.” They had frequent violent arguments and more punishments. It was only in his mid-adolescence that his dad softened after he bought an LP called “Getting Through” that mimicked how a hard-of-hearing person might hear.

Much like John Backus’ mother, 38-year-old Kim Ingersol also reported that her father thought that her hearing loss was “in her head.” When she was five months old, her hearing loss was detected by day care providers. Her father wouldn’t go anywhere with her if she had her hearing aids in. Kim described her dad as “uneducated and stubborn.” Her parents divorced when she was young. Kim’s mother accepted her hearing loss but also created certain boundaries. She found ASL too hard, so she determined that Kim should speak. When Kim was a toddler her year-younger brother somehow intuited her needs and relayed them to her mother, who frequently misunderstood her.

As a society we tend to treat all disabled persons with ignorant nonchalance. Plenty of hearing people who use wheelchairs report that restaurant waiters ask their companions what they want to order instead of them. I often wonder what the world would look like if society recognized physical differences. Helen’s boss could have handed her notes instead of whispering. New acquaintances could have accepted Helen’s need to have them look at her and slow down in their speech without coming to conclusions about her intelligence.

Kim was fortunate to get taught with both ASL and spoken language in special school classes. Research indicates that children who can’t hear advance more quickly with sign language and spoken language alongside it. Such classes had likely not been introduced into schools when John Backus was growing up. He struggled through the regular school system and it’s to his credit that he graduated from high school. As a society we can, right now, ensure that all children get the education they deserve with the help of informed and sensitive teachers who recognize their needs, even, perhaps especially, when they are simply playing a whispering game.

I decided to turn to research studies to find out why people don’t use their hearing aids. The few studies I read shed light on the issues. Turns out there are multiple reasons why people don’t use their hearing aids or use them infrequently. I thought it was mostly stigma. But no.

Financial factors are big, especially in the United States, where most of us must pay all or most of the cost of hearing aids, and the cost of batteries and going back for aid repairs can add up.

The actual physical requirements for using hearing aids can play a factor. Some people simply cannot manipulate the aids well enough to get them in and out easily, to change batteries, and to adjust feature changes with buttons on the aid itself. Hearing Instrument Specialists and Audiologists should check on manipulation abilities before a recommendation because there may be a work-around. Plus, side effects including rashes, itching and pain can occur. Someone complaining of a rash found that she was allergic to whatever produced a logo on her ear mold. She was fine when it was removed. Pain from ear molds can be alleviated with some “sanding” of sorts, instead of complete replacement.

A woman I interviewed, Rose Baren, returned her hearing aids three times because she didn’t think she needed them. Her main reason for getting them was her desire to watch TV without closed captioning. When she went out to lunch with friends, she could hear them perfectly well, eschewing her hearing aids. Her children finally persuaded her that she needed aids to communicate with them. She simply did not know that she couldn’t hear them. A man I dated many years ago before I used hearing aids used to accuse me of not listening to him. Later, I imagined meeting him on the street and saying, “I was hard of hearing.”

Friends and acquaintances with moderate loss or more have told me that they love taking their hearing aids off at home and enjoying the quiet. In some ways, I envy them. I have a need to be alert to what’s going on and often feel uncomfortable when I have my hearing aids out, with or without someone else in the house. The absence of aids serves me well, though, when going to sleep and waking up, making it easier to do both gradually.

A perception of poor-quality hearing or no help with sound in noisy places is a big complaint. Most aid manufacturers are coming out with new models that promise to deliver better “voice in noise” capacity. I don’t know how good the improvements are or how they would be for others. Most of us will have to settle with what we have or can afford, realizing that hearing aids do not return one’s hearing to normal. It’s hard, and probably especially difficult for people who are required by their jobs and/or family circumstances to be in noisy places a lot.

I learned a lot from the few research studies I read. I knew that because hearing loss increases with age, most people who can benefit from aids are older people. Fear of stigma exists but other complicated factors come into play. For elderly people (and that includes me) there is an overlay of learning how to adjust hearing aids, either on the aid or on a smart phone or both, for different volumes and different settings, including telecoils that aren’t automatic. There’s feedback and whistling – what to do about that, when one hasn’t been warned about it? It’s likely that many older people go into the process with the thought that the hearing aids will be like glasses.

With my newest aids, I can make most adjustments on the hearing aid itself, but I sometimes check my smart phone. In church especially this is embarrassing since I worry that people think I’m texting or reading my emails during a service. For some people, especially those who’ve gotten proficient at lip reading, the improvement in a new aid may be subtle or not work at the bridge club, or at work, or at a family gathering. It may just be too much trouble for an older person who must also cope with many technology “innovations” in their lives. My hearing aid app allows me to change to “restaurant” and “TV”, but I forget these settings. And unfortunately, the HA app resembles the app for my laundry room payment. My iPad recently made upgrades that I didn’t ask for and don’t like, but who asked me?

An elderly neighbor of mine had been wearing hearing aids for several years when her hearing got worse. She decided to go back to her analogue aids, which increase volume at all decibels and are decidedly old-fashioned. It was just too much trouble to do anything else. She got her new digital aids from a well-known drug store that had gone into the hearing aid business. After a while, they were not working out and needed adjustment or replacement. Meanwhile the pharmacy chain had gone out of the hearing aid business. I encouraged her to go elsewhere for help, but she didn’t and went back to the analogues, which not only weren’t as good but were vastly insufficient for her increased hearing loss. She just didn’t want the hassle.

All of this has made me realize how privileged I am to afford hearing aids and assistive listening devices that work for me. I am also “lucky” to have had a hearing loss almost my entire adult life. Hearing aids are a way of life for me, and the “upgrades” have been gradual, so I suspect my learning to use new bells and whistles has been easier than for some. But even after many years of use, I was once swayed by bad service for a year. Now I do all that I can to educate myself and to the best of my ability, you.

Still, wearing one’s hearing aids all the time does help a person get used to whatever improvement there is. One gets used to subtle and sometimes annoying sounds. Some sounds are welcome. During a fitting for his first hearing aids, a friend thought there was something wrong when he heard a strange noise. He realized it was the sound of birds chirping outside the window. Today, when I hear the sounds of birds, increasing now that we approach spring, I feel gratitude for the technology that allows me to hear them.

During most of my life I’ve read self-help books. When I was 9 years old, I learned how to iron by reading a book. Later the books were entirely psychological, books like Of Course You’re Angry, or religiously themed, like Simply Sane, and books about astrology. I was late in reading The Road Less Traveled because to my snobby self it seemed too popular to be worthwhile. It is worth reading, although the advice has b een repeated a lot over time.

A book that I still look at occasionally is How to be Yourself by Rita Sherman, consisting of decorated pages, each with a piece of advice. The first is “Start Somewhere.” The second is “Be skeptical of all self-help books, including this one.” Another is “Do what you want, not what you want to want,” and my favorite “Do not eat peaches in February (unless you’re in the Southern Hemisphere).”

I’ve stopped reading self-help books except those related to hearing loss. I read novels, plenty of novels that touch the soul. Self-help is everywhere now, with minute advice about everything from how to clean a bathroom to how to start or stop this or that or another bad or good habit. And tons of others about dealing with big, bad other people – narcissists, co-dependents, dependents, parents, children, roommates, spouses, landlords, and overall toxic people. I am perfect and you’re not, and if I’m not it’s because you are in my life, so go away.

These days anxiety is often related to my hearing loss and pops up even in the most trivial of occasions. Unarticulated themes crowd my head. Will I be a good-enough host or guest? Will I get a seat in front so that I can hear and if I do, will I be able to hear? Will I be able to participate in the discussion or be ignored later because I didn’t participate? Will I interrupt someone unknowingly? I have to dig deep to realize what is making me anxious. That’s where letting go comes in.

Every day I have to let go of wanting to hear everything. The other night a friend was considering whether or not to get new hearing aids, even though her audiologist told her that they would help her hear better. I couldn’t tell her whether to do it or not – “Depends upon how much you want to hear,” I said. I want to hear what people are talking about at the next table. She may well have different needs than I do. I want to hear everything but cannot, alas. I once wanted to become a poet and wasn’t any good at it. I let go of the pursuit just as I must let go of mourning the fact that today I can’t hear everything. It doesn’t do any good and it makes me anxious and afraid. Fear produces anxiety and anger and there’s no point in either of them.

When I go out with friends or visit with them at my home or theirs, I usually have a good time. They mean a lot to me. No doubt they notice when I don’t “get” something and that I ask them to repeat what they said. But they are still my friends. If I need to know something from them, or when I go to the doctor, I ask that they face me and sometimes ask for a repeat. I used to feel…what? Maybe embarrassment or worry that I was imposing. When I start to feel this way, I try to remind myself to let go of it. At the most basic level I need to know that I deserve to exist as I am.

When I manage to be my real self minus anxiety, most people are polite and friendly. I’ve started to have more enjoyable side conversations with, for example, dental assistants, store clerks and receptionists. All I have to do is remember that I don’t have anything to be afraid of, every day.

Finally, I try to remember that everyone has some burden or worry or bad circumstance. There’s a saying, “Be kind, because everyone you meet is fighting a hard battle.” It’s true that hearing loss is sorely neglected by society, where lots more could be done to help us. But I try not to let that stop me from acknowledging that others have their burdens too. Another quotation from Rita Sherman: “Don’t bother trying to be like everyone else; you’re not. (Neither are they.)”

Note that I didn’t mention gratitude for what I have, and I have a lot for which I am grateful. I’m not writing about it because the exhortation to everyone to be grateful seems to be ubiquitous these days and I don’t have much to add to the advice except that being grateful is helpful to me.

All of the above is personal to me and might not resonate with you. If it doesn’t, I’d love to hear from you about what keeps you going.

The Hearing Loss Association of America (www.hearingloss.org), a nonprofit member supported group, provides information and resources, including understanding the basics of hearing loss and how to obtain hearing aids. Their “Consumer Checklist” lists things to expect from an office that sells hearing aids and questions to ask them.

The National Institute on Deafness and other Communication Disorders website (https://www.nidcd.nih.gov/health/hearing-aids) explicates the basics of hearing aids.

Consumer Reports not only rates hearing aids but also Hearing Aid retailers, for subscribers.

The American Association of Retired People (AARP) has an online Hearing Center for members and offers “deals” for hearing exams and hearing aids.

The Hearing Industries Association provides “Hearing Aids 101.” (betterhearing.org/hearing-aids/hearing-aids-101/). The site also has a guide to finding funding for hearing aids.

Over the Counter Hearing Aids

Over the counter (OTC) hearing aids are available for people with mild to moderate hearing loss. To find out whether you are a candidate for an OTC aid, you can test you hearing via your computer, with the caveat that the test may not be as accurate as what you will get from a professional with a soundproof booth. A professional will also be able to discern the cause of your loss and whether aids will help you. You may want to get your hearing tested with an audiologist or hearing instrument specialist first. Then you can buy an OTC from them or shop around as you wish. NOTE: Costco sells OTC aids but does not provide professional support for them.

The National Council on Aging rates the “best” OTC hearing aids on their web site. https://www.ncoa.org/product-resources/hearing-aids/best-over-the-counter-hearing-aids/

Some experts recommend that you not purchase your OTC aids online as scammers may be lingering in the market. You can google places that carry them. Many audiology offices and hearing aid offices serviced by hearing instrument specialists carry OTC aids in addition to those obtained with a prescription.

Audiologist or Hearing Instrument Specialist?

Audiologists have 6-8 years of university education about hearing loss and balance issues. They investigate the causes of hearing loss and will refer you to an Ear, Nose and Throat Doctor (ENT) if you need help with complex issues related to hearing loss.

Hearing Instrument Specialists (HIS) are in most states required to have a High School Diploma. They are trained to test your hearing and suggest a type of hearing aid for you. If the HIS works for a specific hearing aid manufacturer, you will get to choose various models of their brand but will not have the opportunity to try other brands that may have relevant features for your circumstances. Some specialists, however, offer a variety of hearing aid brands.

Both audiologists and hearing instrument specialists are equipped to test your hearing. This should be done with you in a soundproof booth and wearing earphones. You will be asked to indicate the sounds you hear. And additional test, identifying words and repeating them back, will also be administered.

What is your “lifestyle”?

The person assisting you should know about your lifestyle and where you especially wish you could hear better. If they don’t ask, tell them anyway. Do you spend most of your time with close friends in their homes or in yours? Do you enjoy or are required to attend large receptions and cocktail parties attended by many people? Do you wish you wouldn’t lose so much when watching TV? Do you want to hear better when you go out to lunch with two or three friends? This information will help them offer hearing aids with features that meet your needs, and offer auxiliary devices that, when paired with you hearing aids, enhance your hearing experience.

Keep it Real

When you have made your choice of a hearing aid, make sure that they perform a “Real Ear Measurement” to determine whether the hearing aid is working properly. A tiny probe/mic inserted into your ear next to the hearing aid determines whether the sound is getting to you properly. This would be a good thing to ask about when you walk in the door.

Add-0ns or Essentials?

Telecoils are tiny copper wires in hearing aids that connect with copper floor loops. Most hearing aids come with telecoils installed but you must ask if you want one, just in case, and have it activated. Some brands have eliminated telecoils in certain models.

Telecoils activated in one’s hearing aid(s) allow you to use hearing loops wherever they are found. Loops are installed in many public places in the UK and all over Europe. For more specific information, visit my Blog Post 2, Testing, Hearing, Hiding, posted in November 2025. I attended a relative’s funeral in the UK in a small Methodist church and heard everything because it was equipped (by law) with a hearing loop. They are increasing in the United States, especially in places of worship, libraries, public auditoriums, and live theaters. In New York City a law requires the installation of hearing loops in public assembly areas using public money in new buildings and the renovations of large buildings. The Center for Hearing Access has lists of loops in the US and Canada nationally and by state. Centerforhearingaccess.org

Auracast

If offered to you, it should not be a problem to obtain hearing aids with Auracast capability. It should not be included in place of a telecoil. Experts expect that Auracast will eventually be an excellent choice among Assistive Listening Systems. But Auracast is not ready for prime time. See the next three paragraphs if you want to know more about Auracast – or skip them. Auracast will come up again.

Some hearing aid manufacturers offer “Auracast capable” hearing aids, those that are equipped to connect with Auracast technology. The Bluetooth Special Interest Group (SIG) is developing Auracast, which may be the next generation of assisted listening systems, perhaps replacing loops in certain circumstances. The audio transmitter source will connect with all hearing aid receivers and will require less battery consumption. The receiver may eventually be your smart phone, but what is used now is a device that hangs on a neck loop, like an FM device. The device needs to “scan” for the transmission source, and then the user follows instructions. Auracast will make it possible for two or more people, using their cell phones, connect their hearing aids with a TV without any disturbance to the people around them, say, at a bar. Auracast can be added to an existing system, such as a hearing loop.

Auracast advertisers tend to minimize what needs to be done. International standards for Auracast installation won’t be released until 2027. Broadcasts must work with any hearing instrument, but demonstrations have only used one brand. Auracast capable hearing aids need a transmitter device, which may eventually be your cell phone, but it’s not that now. Also, the “latency,” or time it takes for the sound to reach your ears, still needs work.

A personal word – I recently attended a webinar at which Auracast representatives stated that Auracast will serve larger venues than that of hearing loops. I find this hard to believe. As I’ve mentioned before, I first experienced the connection between my hearing aid telecoil and a hearing loop at Yorkminster Cathedral in York, England. The square footage of that space is between 54,000 and 63,800 square feet. It makes me wonder about that claim.

A Final Word

You need to know that hearing aids do not replace normal hearing. People who use hearing aids and all the auxiliary devices they need may still have trouble hearing sometimes, and this can happen every day. Hearing aids, when prescribed, will undoubtedly help your hearing if you wear them all the time. Hearing technologies are improving and scientists are studying how to prevent or reverse hearing loss. But today we have what we have.

Resources

Center for Hearing Access (centerforhearingaccess.org)

(https://www.betterhearing.org/hearing-aids/hearing-aids-101/

Hearing Industries Association (betterhearing.org/hearing-aids/hearing-aids-101/)

Hearing Loss Association of America (hearingloss.org)

National Council on Aging (ncoa.org/product-resources/hearing-aids/best-over-the-counter-hearing-aids/)

National Institute on Deafness and Other Communication Disorders (https://www.nidcd.nih.gov/health/hearing-aids)

From Blog post 2: Testing, Hearing, Hiding

Under perfect conditions, the optimal distance for hearing with hearing aids is 6 to 10 feet. Do you often hear “She hears what she wants to hear”? Don’t believe it. Most people want to hear but may be stymied by:

· Assumptions about the effectiveness of hearing aids

· Ambient noise

· Bad Acoustics

· Inadequate communication strategies

A way to hear better in public is with Hearing (formal name: Induction) Loops - I first experienced the presence of an induction loop when I was in York England giving an academic paper. It was Easter weekend, and I went to church at York Minster Cathedral, the largest gothic cathedral in Northern Europe, trying to get there early for a good seat. Thousands of people got there earlier than I did. I sat halfway down the aisle in the nave and thought I might consider leaving if I couldn’t hear anything. Then I remembered that the UK is way ahead of the United States in providing loops, so I turned on the telecoil in my hearing aids. It was one of the most astounding moments of my life. I could not have heard better if the priest were sitting next to me.

Likewise, at a plenary session of the Hearing Loss Association of American (HLAA) annual conference, I experienced for the first time in decades the luxury of being able to go casually to the back of the ballroom during a conference plenary session to refill my coffee cup and still hear what the speaker in the ballroom was saying. During HLAA conferences, all rooms in the conference center are looped temporarily. It feels like magic. Loops are attached to the floors of the hotel. HLAA is always polite in thanking the hotel for its service, but the fact is that all conference centers could have loops installed in the ballroom and meeting rooms, thereby offering true hospitality to everyone and, for HLAA, avoiding a lot of work for a temporary fix.

From Blog Post 4: Listening for the Bears

Prior to getting an OTC aid, it’s best to get a hearing test from a professional. At-home internet hearing tests can be unreliable and start one off with a skewed perception of what you need. Then you will have a wide variety from which to choose. New companies have been created, promising innovative designs and improvements. If you have a mild to moderate hearing loss and would like to purchase an aid from a professional who will help you, you can do that instead of getting an OTC one. You will then be able to choose a telecoil and Bluetooth as part of your aid(s), which many professionals deem essential for optimum use. Look for a discussion of these must-haves in a future post.

From Blog Post 5: Not all Audiologists are Created Equal

I finally concluded that the brand of hearing aid I was using was incompatible with my hearing loss. But I couldn’t afford to buy new ones, and I felt guilty that the state had partially paid for the ones I had. I wore the new aids at big meetings while using the FM mic, and my old aids other times. When a meeting was over, I’d rush to the ladies’ room to change into my old aids. It was exhausting, but I soldiered on.

After about a year of this, a colleague with a hearing loss was raving about an audiologist she used, praising the professional’s ability to solve problems. I was skeptical but made an appointment and told my story. The brand was not the problem. She did a hearing test, connected my aid to her computer, and adjusted my aids while I answered questions about how I could hear at different frequencies. The whole thing took about an hour. The aids were “fixed.” When I drove away the aids were working perfectly for me. I learned a few things from this experience.

One thing I learned was to trust my own reality.

From Blog Post 6: Public Service Announcement: Sudden Deafness (possible remedy)

Everyone needs to know about sudden deafness, SSHL or Sudden Sensorineural Hearing Loss because it may be reversible. Anyone experiencing a sudden loss should see an Ear, Nose and Throat practitioner (Otolaryngologist/ENT) immediately because rapid treatment is essential. SSHL is an “unexplained, rapid loss of hearing either all at once or over a few days.”[i][1] SSHL happens because there is something wrong with the sensory organs of the inner ear and frequently affects only one ear. It usually occurs among people of ages 40 to 60. Such a loss can be caused by a variety of factors, including noise, an infection, certain drugs, blood circulation problems or neurological disorders. About 85 percent of people treated for it recover their hearing. If this happens to you, you know what to do.

From Blog Post 11: An Iconoclastic View of Bluffing

Bluffing, or pretending to hear when one cannot, gets a solid F in hearing loss expert circles. I am not an expert, and I grade on a sliding scale. My basic attitude is “It depends.”

From Blog Post 13: Cochlear Implants II or What Happens When you Get One? (See Blog Post 12 for implant details)

After the CI implantation, Susan reported that “At first, everything was one ball of sound.” What does this stuff mean? she thought. There followed a series of events such as: “This is the doorbell; this is a dog barking.” Once when driving, she thought her car was making a terrible noise. It was raining quite hard and “everything was horrible.” She drove under an overpass and the noise stopped. “It’s the rain!” She was hearing rain for the first time.

Susan shares that her implant has reduced her isolation, the isolation of deafness. “People can become isolated in their own families. I do too. I’m the only deaf person in my family and when we have family affairs, I don’t know what’s going on. We have 50 cousins on one side. They don’t sign.”

From Blog Post 14: The Emotional Side of Hearing Loss

Having an invisible disability is weird. Dr. Rachel Levin reported that once she was knocked to the floor by someone behind her who asked her to move and became angry that she didn’t. The other day, in a crowded restaurant where I was waiting for a table and others were getting take-out, a woman in front of me told me that someone behind me was asking me to move. I was enormously grateful. I can’t hear from behind, and neither could Dr. Levin.

There’s a Facebook group, The Emotional Side of Hearing Loss, to which I belong. People report shock and grief, especially in the face of sudden deafness or new, horrible “could hear nothing but cacophony” experiences. Many suffer from tinnitus. They get sympathy and advice and “I’ve been there” responses, which are good. Even though I might feel isolated sometimes, when I’m on this and other places online, I am not alone. That’s why I enjoy the Hearing Loss of America Association annual conferences. My people are there. All meeting rooms are looped and there is captioning for all presentations. We all need one or more of these accommodations. It’s not just me.

From Blog Post 17: What to Do and What Not to Do

“Never mind” is not a good response to say to someone who asks you what you said. What you said was likely trivial or silly or maybe profane and you don’t want to say it again. But it’s frustrating for us who want to hear. You can minimize it – “I was just saying that it’s hot in here,” or “Frankly, I was swearing at what happened.” When it’s the punchline of a joke, it’s harder, but please, just say it. It’s the human thing to do.

From Blog Post 20: What Were they Thinking? They Weren’t Thinking of Us (re new airports)

Once, while I was standing in a very crowded space around the gate desk, the airline personnel were announcing the group numbers for boarding. They picked up microphones and talked into them. I was surprised that I could hear nothing. Usually, I can hear a muddled voice. I consulted the person next to me who confirmed that the PA system wasn’t working. When I got to the desk I mentioned the malfunction to the attendant, who said “Yes, I know. There’s nothing we could do about it.” Instead of shouting into the crowd or even walking through the crowd, the two of them were pretending that the mics were working! As Dave Barry often says, I am not making this up. BTW, Dave Barry has a very funny Substack column.

From Blog Post 24: Hearing Loss Humor – Are We Laughing Yet?

I generally don’t like hearing loss jokes, but I do have a favorite one. This joke is ubiquitous.

Husband and wife are in their kitchen. Wife is preparing dinner and has her back to her spouse. He is convinced that she is hard of hearing. He is barely in the room when he asks, “What’s for dinner?” No answer. He moves into the middle of the room. “What’s for dinner?” No answer. Hmm. He stands about a foot away. “What’s for dinner?” His wife turns and says, “For the third time, it’s chicken!”

A friend who is also a reader recently mentioned to me that she can’t hear everything in the movies. She didn’t know about individual closed captioning devices that all movie theaters are required by law to provide – at no charge. They are free and you don’t have to prove that you need one. You might have to leave your driver’s license with them to get back when you return it.

The theater I frequent most often has a gadget that fits into a cup holder with a windy tube with a rectangular box at the end that one adjusts under one’s eyes. It’s awkward but worth it. Some theaters give you glasses that you can put on over your glasses if you wear them. The captioning appears on the lower part of the glasses. These are more convenient but sometimes the theater people neglect to clean them. All devices must be charged. I’ve encountered a few glitches but not many. If they don’t have a device that works, you can complain to the FCC. https://consumercomplaints.fcc.gov/hc/en-us/requests/new?ticket_form_id=36040 It’s easy and I’ve done it.

BTW, the New York City Chapter of the Hearing Loss Association of America is pushing for a law that would require all movies to be open captioned. The captioning exists in the movie but now can only be seen through closed caption devices, except for “special” open caption days. If they were open, everyone would see the captions on the bottom of the screen, as we do on TV (except that on TV some idiot sometimes places the captions close to the middle of the screen, blocking the picture!). Then we hard of hearing people could just walk in like everyone else. Imagine!

Here is what they look like:

Back to Humor

Years ago, I moved to Wichita, Kansas for a job, and spent 13 years there, loving my job and making good friends. Before and after I left, people around me often joked about my name, Dorothy, and my being in Kansas. Ha. Ha. No one who lived in Kansas ever mentioned this to me the entire time I was there. While the airport gift shop is full of Wizard of OZ merchandise, trinkets and tee shirts, for the people of Kansas the association gets old. That’s how I feel about hearing loss jokes. Enough already.

I generally don’t like hearing loss jokes, but the following is one I like. This joke is ubiquitous.

Husband and wife are in their kitchen. Wife is preparing dinner and has her back to her spouse. He is convinced that she is hard of hearing. He is barely in the room when he asks, “What’s for dinner?” No answer. He moves into the middle of the room. “What’s for dinner?” No answer. Hmm. He stands about a foot away. “What’s for dinner?” His wife turns and says, “For the third time, it’s chicken!”

A former academic, I generally go to the university library for research on my blog topics. The results of typing in hearing loss and humor were scant. One research study interviewed people with hearing loss and found that several use humor to introduce their hearing loss to others, in a way of softening the declaration, that is, not being too serious.

In another study, thirty hard of hearing people were asked to videotape conversations with others in which they revealed their hearing loss. In ways that were defined as “stigma management,” they often jokingly introduced the topic. This can translate to: No need to pity me. I’m fine. When the humor came from others, though, sometimes it came across as “teasing.” “Do you have your hearing aids in, Grandpa?” for example, bordering on insult or infantilization.

Asking a receptionist for size 13 batteries for my hearing aids, I once joked that it was easy to remember the number because 13 signals bad luck, mine being that I’m hard of hearing. She not amused.

Hearing jokes are easy to find online. I would love for readers to comment “funny” or “not funny” about them.

“I got a new hearing aid.” “What kind is it?” “Five o’clock.”

Crotchety woman: “I need a new hearing aid. I can hear people talking to me with this one.”

A group of HOH people protesting: “What do we want?” “Hearing aids!” “When do we want it?” “Hearing aids!”

4. A boy prays loudly “God, please give me a bicycle.” His mother says, “Why are you praying so loud? God isn’t hard of hearing?” He replies “No, but grandma is.”

I looked for some other disability jokes and found a website called wheelchairjohn.com. The moderator says that joking helps on the hardest days. I don’t know how it feels to need a wheelchair to get around. Some of the jokes seem to be a type of “stigma management.” Something like – I am comfortable with the way I am, so you can be too. Nothing to be afraid of here. No pity required”

“My chair only takes 3 seconds to go from zero to ‘sorry about your toes.’”

“My wheelchair came with a horn. I upgraded it to the Ice Cream Van tune to attract kids and watch the disappointment in their faces.”

“My cat Queenie thinks my wheelchair is a ride. Now I charge her Uber rates.”

When I looked for “blind jokes,” I found a Facebook Group with 4.3 thousand followers. Most of their jokes were stories of their experiences, in which they had sarcastic comments.

A woman despairs that there aren’t enough books printed in braille. When she asks for accommodations, sometimes people say, “Unfortunately, we live in a sighted world.” She replies, “Wow, I totally didn’t SEE that coming!”

A flight attendant tells travelers to read the instructions in the back of the seat. She says, “I’ll make sure to read it,” amid her companions’ giggles.

A woman is told that she will need a ride home after surgery since it won’t be safe to drive. She replies that it’s never a good idea for her to drive anyway, since she’s blind.”

On other sites I found blind jokes that were mostly puns. “My blind wife left me. At least she isn’t seeing anyone else.” Or “Why did the blind woman fall down the well? Because she couldn’t see that well.”

Many disability jokes are off-color, and I won’t repeat them here.

Amusing things happen to hard of hearing people every day, especially when traveling. People have been asked if they want a wheelchair when they have reported their hearing loss. One person told a flight attendant that she had hearing loss, and the attendant came back with a braille menu. Disabled people may make flight attendants nervous (maybe scared?) and so eager to do the right thing that they don’t pay close attention. This is where smiles and maybe humor from us may help.

Gael Hannan is a writer/hearing loss advocate with hearing loss who does stand-up comedy about living with hearing loss. She is very funny and on the mark. She has discussed hearing persons “super powers,” like hearing in the dark or knowing the direction a sound is coming from. You can learn from and about her on www.gaelhannan.com. She has also teamed up with Shari Eberts to write the book, Hear and Beyond: Live Skillfully with Hearing Loss, an excellent primer on navigating one’s loss.

I used to have a Phonak “Roger Pen,” a mic that looked like a pen that conveyed sound directly to my hearing aids. At book club I had it on a table and someone picked it up, thinking it was a pen. I rescued this expensive item. I got a new generation Roger that didn’t look like a pen. Then someone in book club asked me why I was recording the discussion. I held back from saying “Why would I want to record this conversation?”

By coincidence, an online newsletter for audiologists, The Hearing Review, arrived this week, featuring an article by Michael A. Harvey, PhD, “The therapeutic use of humor in audiology.” (Nov. 7, 2025). He claims that humor can equip patients with “emotional armor,” the ability to manage grief and trauma, sometimes with “gallows humor.” He also thinks that humor can build trust with patients and disrupt their negative thought cycles. I noticed that several of his examples were remarks initiated by the patients, which is quite different from having one’s specialist joke about one’s circumstances.

Often I tell new acquaintances that I have hearing loss. Frequently the response I get (usually from men, don’t know why) is “What?” followed by a chuckle. I chuckle back. This has happened many times and I have never found it funny. My friends would tell you, though, that I do have a sense of humor and can laugh at myself.

Occasionally I feel sad, mourning my lost ability. I can be in a crowded audience, hearing just about everything from the speaker, until I don’t. Everyone is laughing and I can remember a time when I would have heard the joke. But I know that I am way better off than the majority of people in the world. I have an excellent life and more than 90 percent of the time I hear what I want or need to hear. I do sometimes avoid occasions that I enjoyed in the past but now simply can’t deal with, given my inability to hear much. I perform stigma management with an open and friendly demeanor, indicating whenever possible that my loss is not anyone’s “fault,” and asking for accommodations politely. But I don’t see anything funny about it.

Sources and Resources

Eberts, Shari, and Hannan, Gael. Hear and beyond: live skillfully with hearing loss. Canada: pagetwo. 2022.

Katie Ekberg, Barbra Timmer, Carly Meyer, Monique Waite, Nerina Scarinci, Mansoureh Nickbakht & Louise Hickson (2025) A laughing matter? Managing hearing difficulties in real life everyday social interactions with adults with hearing loss, International Journal of Audiology, 64:sup1, S39-S47, DOI: 10.1080/14992027.2024.2389189.

To link to this article: https://doi.org/10.1080/14992027.2024.2389189

Hannan, Gael. The way I hear it: a live with hearing loss. Victoria, BC, Canada, Friesen Press. 2015.

Brittany N. Lash (2022) Managing Stigma Through Laughter: Disability Stigma & Humor as a Stigma Management Communication Strategy, Communication Studies, 73:4, 412-424, DOI: 10.1080/10510974.2022.2102668

To link to this article: https://doi.org/10.1080/10510974.2022.2102668

Recently I watched a video of a research symposium held by the Hearing Loss Association of America’s annual convention in June 2024, “Hearing Loss Stigma: Making the Invisible Actionable.” If you’d like to watch it too, you can go to the site listed under this week’s resources. I will be referring to it in this post and adding some thoughts that sprung to mind while watching it.

I’ve known about stigma for some time but thought about it as something imposed upon others that can be internalized or detrimentally affect the stigmatized person. Dr. Laura Nyblade defines it a “social process,” or “something we do to each other.” We recognize and label differences to which we attach negative qualities, and separate “us” from “them.” The result is “status loss and discrimination.” Dr. Nyblade has a lot of experience working on the concept and practice of stigma, having originally worked with stigma related to people’s HIV status. She mentions that even today, when we know how the HIV virus is transmitted, some health professionals continue to be reluctant to touch let alone treat patients who are HIV positive.

Most people can expect to have some hearing loss in their lives, generally hoping that it will occur very late in life. Those of us who have and have had “premature” hearing loss probably scare them. “Terror Management Theory” maintains that ageism is related to a fear of mortality among younger people, who are reminded of death when among the elderly. In any case, it’s easy to ignore hard of hearing (HOH) people. That puts all HOH people and elderly people with hearing loss, in some danger.

Researchers point out that the influence of stigma shows up from different perspectives. We may anticipate stigma (I’m not ready for hearing aids.), experience it (noticing negative attitudes toward me), perceive it (noticing negativity widely toward my group), and finally internalize it (accepting one’s lower place in society as justified). Stigma also touches those close to us. Spouses sometimes discourage people from getting aids. A woman I know told her spouse that she’d just found out that she is a candidate for cochlear implants. “You’re not getting them, though, are you?”, was the immediate response. I interviewed a couple of people with lifelong hearing loss whose parents refused to believe that they needed any hearing device, apparently appalled to find this “flaw” in their young child, thereby making things worse.

Most people in the US take about 10 years or more from recognizing hearing loss to doing anything about it. The cost is often cited as a factor for this delay and surely it is. Yet in the UK, where hearing aids are available for free from the National Health Service, the use of aids by people who could benefit from them is quite low. Smaller, almost invisible, hearing aids allow the wearer to “pass” for a hearing person and avoid the stigma. The hearing aid industry encourages their use, thereby enforcing stigma.

We HOH people are in a decided minority and hearing people generally assume that everyone can hear until they are told otherwise. Primary care physicians (in one study 80%) often do not screen patients for hearing loss, giving the impression that hearing loss is not an important health issue. One patient told his doctor that his wife thought he had hearing loss and the doc responded, “Wives say that don’t they?”, ending the conversation. (His wife was furious.)

Likewise, some audiologists tell older people that they detect some hearing loss but it’s not enough for them to bother about getting hearing aids, making the decision for them, and not bothering to find out whether the patient’s communication with others has been affected. Some tell their patients that “it’s just aging.” When an audiologist says this, s(he) clearly doesn’t understand the consequences and pain of not hearing. And it signals an acceptance of stigma with the unexplored conclusion that the patient “of course” wouldn’t want a hearing aid.

The failure to recognize hearing loss as an important health factor seriously impacts care of people who are dying. Studies have shown “compromised symptom assessment” in palliative care settings. Hearing tests are either shortened or not done at all. A misinterpretation of cognitive status, namely the assumption that dementia is present, can result if a patient fails to answer questions correctly. The patient may then be left out of determining the goals of care.

An extra component accompanies hearing loss in that hearing loss makes demands on hearing people. Even when the HOH person uses hearing aids or cochlear implants and assistive listening devices, none of them replace normal hearing and they don’t always work perfectly. Spouses and friends hear certain pleas all the time, and we must demand some responses from the commercial world. We say (often) “Please look me in the eye when I speak. I can’t hear you when you talk from the other room or behind me or with shining lights behind you. Could you not cover your mouth when you speak? Please slow down.” Could you repeat that? Could you repeat that again? Can we move to another room, away from the party, so that I can hear better? The responses we get can vary. With customer representatives on the phone, I find that they will slow down for about one sentence before rapidly reverting to their usual rapid pace.

We HOH people call upon hearing folks to help us communicate with them, almost every day. We advocate for ourselves, whether it’s to a restaurant server or a loved one at home. Over and over. As panelist Margaret Wallhagen remarked, “constant self-advocacy can lead to burn-out.” I know how this feels. Some days I can’t manage to talk back, especially to a health care provider who after all has some power over me and is under time pressure to do her job, or even to a server who got my order wrong.

This is where hearing people come in. Here are some things that the hearing people who love us can do, to advocate for us, once in a while.

· If you bump into someone you know who has hearing loss, take the time to chat with them. Look them in the eye, lean in closer so that they can read lips and hear better, and really listen to what they have to say. You may be contributing to their mental health.

· If you have a close relative who is hard of hearing, maybe your mother, go with her to the doctor and stick up for her, asking the health professionals to speak directly at her, louder and slower. Demonstrating to the health professionals the proper way to work with people will help enormously and save your loved one from repeated aggravation.

· With a friend who has better hearing in one ear, be sure to be on their better hearing side whenever possible. If you forget what side that is, ask again – they won’t mind. You are signaling that you care about communicating with them and can willingly accommodate their hearing needs.

· Consult with hard of hearing friends about where to eat out with them, since they probably know the least noisy places. Tell them that you’d like to go to a less noisy place too so that you all can connect. You’ll be indicating that the person is more important than the place. You can go to a noisy place with other hearing folks.

I realize that all this may seem like a drag. It never goes away and there are no in-your-face reminders of the disability, like wheelchairs. But it means a lot.

SOURCES

HLAA STIGMA SYMPOSIUM LINK (or go to their website and search for it: hearingloss.org

https://www.hearingloss.org/resources/hlaa-research-symposium-2025-hearing-loss-stigma-making-the-invisible-actionable/?_gl=1*y67lue*_up*MQ..*_ga*MTQxMzg2ODg0Ni4xNzYxMzM0NTgz*_ga_4GMB4VS26N*czE3NjEzMzQ1ODMkbzEkZzEkdDE3NjEzMzQ2ODckajYwJGwwJGgw

McKee, M., James, T.G., Helm, K.V.T., Marzolf, B., Chung, D.H., Williams, J. & Zazove. P. Reframing our Health Care System for Patients with Hearing Loss. Journal of Speech Language Hearing Research, 2022, Aug. 15, 65(10):3633-3645.

Stevens, M.N., Dubno, J.R., Wallhagen, M., and Tucci, D. Communication and Healthcare: Self-Reports of People with Hearing Loss in Primary Care Settings. Clinical Gerontology, 2018, Apr. 27, 42(5), 485-494.

Wallhagen, Margaret I. The Stigma of Hearing Loss. The Gerontologist, 2009, v. 50, #1, 66-75.

Wallhagen, Margaret I., Strawbridge, W. Hearing loss education for older adults in primary care clinics: benefits of a concise educational brochure. Geriatric Nursing Vol. 38, Issue 6, Nov.-Dec. 2017, pp. 527530

West, Jessica, Hearing Impairment and Mental Health Among Married Couples. Journals of Gerontology, Gerontol B Psychol Sci Soc Sci, 2021, Vol. 76, No. 5, 933–943, doi:10.1093/geronb/gbaa023

From HLAA I learned that researchers are looking at how the ocular hair cells in birds regenerate, since the deterioration of hair cells in the human inner ear, which don’t regenerate, causes hearing loss. From Hearing Tracker I learned the difference between hearing aids with domes versus those with custom ear molds. In the Facebook group, “Hearing Loss, the Emotional Side,” I have joined others to give sympathy and tips to someone recently diagnosed with hearing loss, sharing our stories.

From the Center for Hearing Access, I can get an updated list of places with hearing loops in Ohio and almost every other state. In an online listserv of the Say What Club, I encountered a member who cannot wear hearing aids but has mastered the art of lip reading to perfection. Just this morning I read on Facebook that a woman found out from her doctor that she is allergic to the chemical used to imprint a label on her ear molds. She got molds without labels, and they no longer bother her. Visiting websites and Facebook and getting listserv messages helps me to do all that I can to hear better and to know that I am not alone. People are out there, struggling with me and fighting for me. They reaffirm my right to an equal place in the world.

A Hearing Instrument Specialist once told me that he doesn’t mention telecoils and hearing loops to his clients because we don’t have loops in Cleveland. Au Contraire! There are lots of looped places in Cleveland and Ohio, but some professionals keep to what seems to be a very narrow lane. Luckily for us, there is plenty of accurate and helpful information to be had online.

Hearing advocate and lipreading teacher Chelle Wyatt recently wrote an essay about dementia and isolation. The association of dementia with hearing loss is becoming well known, but it’s only an association. Chelle discusses the role of isolation among those with hearing loss. Sick of going to meetings and social gatherings where we can’t hear, we withdraw. It’s so much easier, but it’s isolation that might lead to dementia. Socialization with others is an important part of life – the opposite can be loneliness, rampant in the US today. Socialization online is not the same as lunch with a friend, but an online community can help and even give us the courage to get out there.

The following resources are ones that I think are useful. But you may not. I use some of them. It’s clear which ones I like. I left out sources that seemed iffy to me as well as places that sell hearing aids. But I do not personally endorse any of them. Judge for yourself.

SAY WHAT CLUB – https://www.saywhatclub.org

The Say What Club members are people with hearing loss. The group is totally run by super volunteers. A nonprofit organization, they are all about peer-to-peer information, support, and community. Their website is comprehensive, including such topics as how to read an audiogram and how to cope with difficult situations. They have a blog and an annual convention.

The club sponsors two Facebook groups (one for people between the ages of 18 and 40), and five listservs. Their listservs include one for cochlear implant users and potential users, a general one that focuses mainly on hearing loss, a “forum” that includes “topical discussions of all sorts and interests,” a “world” listserv that includes members worldwide, and “Vistas,” a listserv with capital letters only for people who have Ushers Syndrome or low vision.

HEARING LOSS ASSOCIATION OF AMERICA - https://hearingloss.org

HLAA is a national organization based in DC, with chapters around the country. They have a blog, news alerts, a Facebook page and an annual conference. HLAA provides basic information about hearing loss and hearing loss devices, where to find help, and how to advocate for what you need. They have a public policy director who interacts with federal offices and lawmakers to advocate for the needs of deaf and hard of hearing people. They monitor the latest research about hearing loss and feature a morning research symposium at their conference.

HLAA has an online newsletter and a magazine, Hearing Life. A gift of any amount makes you an HLAA member, although a gift of $45 or more is required to receive the magazine which comes out three times a year.

HLAA chapters provide support, information and fun for members. They organize annual “walks for hearing” to publicize hearing loss as a public issue and to raise funds. Many chapters engage in advocacy work to promote public hearing accessibility. The New York City Chapter is an example of how successful advocacy can be. Go to https://www.hearinglossnyc.org/

HEARING LOSS LIVE – hearinglosslive.com

Created by Shelle Wyatt and Julia Stepp, Hearing Loss Live publishes a blog, podcasts and a YouTube page. Their resource page includes useful definitions as well as promoting other websites.

For a price, Shelle and Julia offer several series of lipreading classes, described in detail on their site. Yearly and quarterly paid “members” get classes that are member-only, but additional fees sometimes apply.

HEARING TRACKER – www.hearingtracker.com and Hearing Tracker’s Hearing Aid Forum, https://forum.hearingtracker.com

Hearing Tracker is an independent go-to place for hearing aid ratings. They have a YouTube channel featuring audiologist Matthew Allsop who rates hearing aids in general and in relation to a user’s particular needs. They also have an online newsletter and a hearing aid user’s forum, where one can discuss satisfaction or dismay about one’s hearing aids or components of hearing aids. To support themselves, they sell hearing aid accessories and ads to corporations without a promised quid pro quo of endorsements.

The Forum offers a “place for discussion and feedback about hearing loss, hearing aids, cochlear implants, bone-conduction / bone-anchored hearing aids, and other hearing devices.”

HEARING HEALTH AND TECHNOLOGY MATTERS – hearinghealthmatters.org

From their website: “Our vision is to provide timely information and lively insights to anyone who cares about hearing loss.” The site has a team of contributors, including Sherri Eberts and Gael Hannon, authors of Hear and Beyond.

CENTER FOR HEARING ACCESS – www.centerforhearingaccess.org

The Center for Hearing Access, located in Eugene, Oregon, is dedicated to increasing the provision of hearing access throughout the country, via loops and assistive listening devices and systems. I have discussed loops and telecoils in a previous blog but if you’ve forgotten what they are and how they work, their site will give you understandable comprehensive information. They describe how loops and assistive listening devices work, maintain an updated list of looped venues in the nation, and give advocates what they need to advance the work, including free graphics. I join a monthly national meeting via Zoom that they host to exchange information about advocacy and teach the group about new initiatives.

HEARING HEALTH FOUNDATION - Hearinghealthfoundation.org -

From their website: “The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. HHF is the largest nonprofit funder of hearing and balance research in the U.S.”

The foundation produces a free magazine, newsletter and research updates for the public that help the public better understand how scientists are looking for ways to prevent hearing loss and advance healthy hearing.

JULIETTE STERKINS TEDX TALK – WHAT YOU DON’T KNOW ABOUT HEARING AIDS – Juliette Sterkins, nationally known and admired audiologist and advocate for hearing access especially via hearing loops, gives an excellent TEDx talk on YouTube.

FACEBOOK GROUPS

COMMUNITY FOR THE DEAF AND HARD OF HEARING - 60K members

Congenial group sharing dilemmas and help. There seems to be more participation by deaf people and about deafness than with other groups.

HEARING AID AND HEARING LOSS SUPPORT GROUP – 51.9K members – Hearing Tracker’s Facebook page.

HEARING HEALTH MATTERS – Facebook page for the group, Hearing Health and Technology Matters

HEARING LOSS COMMUNITY – 25K members – This group is for people who are or identify as deaf. In their own words: “This group is for the majority who do not quite fit in with the “Deaf Culture” but are part of the “deaf community”. This group encourages open mindedness, support and a new kind of community. We want to get away from the tired idea that you have to be a part of one exclusive community. This group does NOT discourage ASL, Cued Speech, Oral or any approach that a person with hearing loss grew up with.”

HEARING LOSS-THE EMOTIONAL SIDE - 5.8K members - This group is a place for confusion, exasperation, anger, grief, and all the feelings that go along with having hearing loss. Members respond with empathy and support, and while this is not a “how-to” site, some suggestions for coping with difficult situations.

LIVING WITH HEARING LOSS GROUP – 11K members - moderated by Sherri Eberts, co-author, with Gael Hannan, of Hear and Beyond: Live Skillfully with Hearing Loss. Page Two, 2022 – Sherri posts often with helpful advice.

Let me know if this post has been helpful.

I am moving to bi-weekly posting, with diligent research and thinking in between.

Cheers,

Dorothy

The New York City law requiring airports to have loops was passed in 2021 and covers all new renovation. It thus applied only to Delta airlines’ Terminal C, which was not completed at the time the law went into effect. I was flying American in Terminal B, which had been completed enough by the time the law was passed. I found this out from Jerry Bergman, head of advocacy for the New York City Chapter of the Hearing Loss Association of America. They have done tremendous work in getting Assistive Listening Devices and systems mandated throughout the city. To find their accomplishments, go to: https://www.hearinglossnyc.org/advocacy-1

Celebrated as completed in 2024, the LaGuardia terminals look new. After check-in and security, I arrived via a long walk and several escalators. The signage, the carpets, places to sit, tables for sitting and eating, were everywhere, not to mention multiple places to order food or drink. Charging stations everywhere. Large windows for seeing planes take off. Play areas for kids. It’s a wow. But wait. Paid for by the Port Authority of New York and New Jersey and two “private partners” (Delta and American Airlines), it has won many prizes and been touted “The best new airport terminal in the world.” Some things were missing.

The airport requires lots of walking, to the gate and from the gate. The internet (AI) tells me that one reason for the long walks is to “allow passengers to spend more time browsing and purchasing from airport stores and kiosks, from which airports gain revenue.” When I arrived and followed signs to the baggage claim, each indicated the average number of minutes to get to…the next sign! I encountered only one moving sidewalk, which is quite short. I saw a few people in airport wheelchairs being pushed to their destinations. I expected to see open carts similar to golf carts, like we have in Cleveland, with 4-5 seats. (They are free but it’s good to tip the driver.) They are for people who don’t need wheelchairs but can’t walk as far or as fast as required – older people, permanently or temporarily handicapped people, people with large families. Once I got off a flight in Cleveland and found out that I couldn’t walk because of an excruciating pain in my heel – it turned out to be planter’s fasciitis. I immediately got on a cart, conveniently waiting near the gate.

According to the Census Bureau, in 2014 about 10 million people over 65 had difficulty walking, which was the most prominent disability among disabilities in that age range. Plus, approximately 15% of American adults (37.5 million) aged 18 and over report some trouble hearing. I’m not sure that the people who build, renovate and control airports take these stats under consideration. And yet, for now, the following still stands.

Reauthorization Act of 2024, Federal Aviation Administration (signed May 16, 2024)

p. 489-490

(e) AIRPORT FACILITIES – Not later than 2 years after the date of enactment of this Act, the Secretary shall, in direct consultation with the [US] Access Board, prescribe regulations setting forth minimum standards under section 41705 of title 49, United States Code, that ensure that all gates (including counters), ticketing areas, and customer service desks covered under such section at airports are accessible to and usable by all individuals with disabilities, including through the provision of visually and tactilely accessible announcements and full and equal access to aural communications.

A colleague of mine in the national group convened by the Center for Hearing Access has interpreted this law to mean that airlines must have captioning. I think that it could demand hearing loops, since captioning might be difficult in interpreting aural communications, which are quick and frequent. I am aware that currently we have a federal government that is operating differently from all that preceded it, and indeed at the moment the government, shut down, barely exists. Yet, I am hopeful that this law will stand, although it may take groups of people suing airports that do not comply.

Once, while I was standing in a very crowded space around the gate desk, the airline personnel were announcing the group numbers for boarding. They picked up microphones and talked into them. I was surprised that I could hear nothing. Usually, I can hear a muddled voice. I consulted the person next to me who confirmed that the PA system wasn’t working. When I got to the desk I mentioned the malfunction to the attendant, who said “Yes, I know. There’s nothing we could do about it.” Instead of shouting into the crowd or even walking through the crowd, the two of them were pretending that the mics were working! As Dave Barry often says, I am not making this up. BTW, Dave Barry has a very funny Substack column.

In writing this I thought of the phrase, “No one is coming to save us.” The original, “No one is coming to save you,” was coined by Nathaniel Branden, who worked with Ayn Rand. I personally object to her philosophy of objectivism and her rejection of altruism. I use the phrase out of context with her meaning. I do mean, though, that if we, the disabled and older people in the population, do not speak up, make our needs known, and assert our inherent belonging in society, no one else will do this for us. As for hard of hearing people, many of us pretend we don’t need any help, so we have some reckoning to do. No one is coming to save us, and my visit to the grand new $8 billion airport renovation, reinforces, for me, this belief.

RESOURCES

Mobility is Most Common Disability Among Older Americans, Census Bureau Reports, https://www.census.gov/newsroom/archives/2014-pr/cb14-218.html

The fact is that while countless physical and mental attributes can be influenced in some way, we often can’t change them. I may be born with a better-than-average eye-hand coordination that I use to develop athletic ability. Much will be due to my efforts. Yet the basic framework for this ability is not entirely due to my own efforts. Environmental circumstances may play a part, such as having a coach, being able to go to a gym, and affording nourishing food. Still, the physical potential has a role.

A friend of mine recently heard from his doctor that he has a hearing loss and could benefit from hearing aids. He is thinking about it and may not get them. I don’t know anyone who has been told that they can’t see properly who take time to think about getting glasses, unless they can’t afford them. My friend can afford top-of-the-line hearing aids.

Research affirms that people in the Western world see those with hearing loss as “unacceptably different.” To my friends, I am acceptable, but I may not be to others. Hearing aid manufacturers increasingly produce and advertise smaller hearing aids, promoting their invisibility, and consumers are responding well to the call.

In the UK, where hearing aids are available for free from the National Health Service, the use of aids by people who could benefit from them is low. Upon noticing a hearing loss, most people wait several years before getting a hearing aid. Smaller, almost invisible, hearing aids allow the wearer to “pass” for a hearing person and avoid the stigma. Stigma is a key term associated with disability

The idea of stigma began with the Greeks who used the word to refer to bodily signs that they associated with a negative moral status. David Owen tells us that people used to assume that someone who couldn’t speak or hear “must be unable to think,” and were therefore uneducable. In the United States it wasn’t until the 19^th century that things began to change.

Sociologist Erving Goffman’s 1963 landmark book about stigma remains the primary touchpoint about stigma for social scientists today. He defines stigma as the “situation of the individual who is disqualified from full social acceptance.” He calls discredited groups “the outs.” Society tends to associate additional negative attributes to the ones that “the outs” appear to have. Hearing loss, for example, may be associated with a lack of intelligence or even dementia. Bernard Henri, formerly CEO of Cleveland Speech and Hearing Center, has remarked upon how often people who are deaf are considered below par intellectually. He says, “People in general don’t know how to deal with people who have deafness and communication disorders.” People think that they are intellectually impaired.” Such thinking gives rise to stereotypes. Stereotypes strengthen the power differential between marginalized groups and the majority, allowing the construction of public policy that tends to ignore the former.

Hearing loss increases as one ages. Older people often say that they are “not yet” ready for hearing aids. The implication is that the hearing isn’t bad enough or that the person isn’t old enough. Most people with age-related hearing loss have mild loss but hearing aids do make a difference.

Some of the “outs” use “stigma management,” a term coined by Goffman, as a way of deflecting attention from the disability or to hide the discredited trait. Helen Treen says that her hearing loss is not the first thing she tells people about if it doesn’t seem necessary, comparing it with sharing one’s food allergies to people with whom she won’t be eating. For a long time, Jane Davis didn’t tell her friends, a group of mothers, about her hearing loss. Gladys Ashwood didn’t tell her college students about her loss, sometimes asking people to repeat “so that everyone can hear.”

Another aspect of stigma management is to avoid others who have the discredited trait, or at least to separate from them, even if psychologically. A very intelligent friend of mine with whom I often attended movies (where I use a rather bulky closed captioning device), told me about a device she bought that helped her hear better in the movies. “But it’s not a hearing aid,” she said. She had purchased a “personal sound amplification device” or PSAP, the precursor of Over the Counter (OTC)hearing aids. They were replaced by FDA regulated OTC hearing aids, making it easier to choose a useful and safe aid. I explained that even though they weren’t called hearing aids what she had was a kind of one, that is, a device that amplified sound. She persisted in telling me that they weren’t hearing aids. This friend was in her nineties and freely spoke to me about some of her ailments.

Sometimes I speak up at events to ask a speaker to use the mic or to ask if the chairs can be re-arranged so that I can hear better. People come up to me afterward and thank me for speaking up because they can’t hear either, even though they didn’t support my request openly when I was making it. While I know it isn’t personal, and very likely unconscious, their disassociation from what may be our shared disability is disappointing to me since it appears that I am asking for an accommodation for myself alone. It still takes courage for me to ask publicly for an accommodation.

I am the only member of my movie discussion group with a long-standing hearing issue. At first, we met in restaurants to discuss the movie we’d attended. We moved our meeting places from restaurants to people’s living rooms to members’ dining tables so that we could hear better (Not to mention the convenience in drinking wine and eating cheese.) At the movies I always get a closed captioning device. Two members of my group tentatively asked me about this very visible expedient. “Do you have to prove your hearing loss?” they asked. I explained that all one had to do was to ask for one. To date I am the only one using the thing. I suspect that the stigma of having a hearing loss is too much for some members of the group, but maybe not. My loss is worse than any of theirs.

I used to hide my hearing aids because I didn’t want new acquaintances to perceive my hearing aids before they knew anything else about me, lest they know me as “that woman with hearing aids.” Definitely stigma management. Stigma management can also mean staying away altogether, sitting by oneself at a party, or doing all the talking to avoid the risk of trying to listen.

I was confronted with my status as disabled when I asked a fundraiser if he knew of fund-raising groups that have taken up the cause of induction loops and other helps for people with hearing loss. He recommended a group that advocates for the disabled. In that single moment, after 30+ years of wearing hearing aids, I realized that I was “disabled.” I had never thought of myself as such, even as I told friends about my hearing loss, and even as I was eager to lobby for more attention to people with hearing loss. I know that hearing loss and the accommodations available are way more complicated than getting eyeglasses to improve one’s eyesight. Yet I’ve always thought of my hearing aids as akin to glasses, not an indicator of a disability.

Thinking of oneself as disabled may or may not be a good thing for someone personally. People get comfortable with the way they are. Research indicates that many people with what could be considered serious disabilities believe that most other disabilities are worse than theirs. If you’ve incorporated a bodily anomaly into your identity, then you might not think of yourself as disabled. I told the above story to a friend at lunch, and she was quite surprised that I didn’t think of myself as disabled as she had always thought of me that way in the ten plus years of our friendship. Another friend suggested that I put myself up for a City Council committee in the small city where we lived, pointing out that the committee had no disabled people on it and was in sore need of one. I was astounded.

Calling oneself disabled with hearing loss makes sense because people who are hearing impaired are still impaired, even with hearing aids. People may see themselves functioning very well compared to people who are disabled in other ways, like people in wheelchairs. Yet the fact is that much of the time hard of hearing people with hearing aids need more help. We hide it and conveniently claim not to have a disability, even when we quietly have given up going to the theatre because we can’t hear. There is stigma related to a disability identity that is unwanted and thus easily defined as unwarranted. This is dangerous.

Stigma management makes us, and our needs, invisible. If we insist that we are not disabled and don’t need anything to help us hear, people and institutions will believe that, and why shouldn’t they? Hearing aids are rarely noticed nowadays. When they are noticed, to the ignorant hearing world they may well represent perfect hearing.

Recently I contacted two well-known Cleveland organizations to ask about what assistive listening devices or systems they had available. Each had recently either renovated a new space or built a new building. They blew me off. One said that they bought some devices last year and are “all set,” neglecting to answer my question about what kind they are exactly and how people can know about them. The other said that they had spoken with the building people, and they are currently ordering devices. Now? My unspoken response was “Are you kidding me? Not knowing that the ADA requires them?” The response seemed unbelievable to me but, really, how should they know? Wheelchair ramps are ubiquitous and should be. They don’t remove the stigma of being disabled but at least their people can get into the show. “We” can get in but may not hear the show.

The stigma involved with hearing aids contributes to the lack of education about it in the hearing world. Nobody wants to talk about it because people with aids do not want to be among the ranks of the disabled. Hearing people don’t want to embarrass us by asking about it.

Can stigma change? The answer is probably yes. Dorothy Parker’s comment that “Men don’t make passes at girls who wear glasses,” is relatively outdated. Many movie characters wear glasses, and the eyeglass business seems to be flourishing. I have often wondered whether the hearing aid establishment ever tried to reduce stigma. As of now, the burden is on hard of hearing people to “come out” as disabled and educate the public. I want to go back to the theatre.

RESOURCES

Goffman, E. Stigma: Notes on the Management of a Spoiled Identity. New York: Simon & Shuster, 1963.

Joel Michael Reynolds, The Meaning of Ability and Disability. The Journal of speculative philosophy. V. 33, Issue 3, Sept 6, 2019, 434-447.

David Owen, Volume Control: Hearing in a Deafening World. New York: Riverhead Books, 2019.

Erler, S.F, and Garstecki, D.C. Hearing Loss – and Hearing Aid – Related Stigma: Perceptions of Women with Age-Normal Hearing. American Journal of Audiology, Am J Audiology, 2002 Dec;11(2):83-91. doi: 10.1044/1059-0889(2002/020).

A HOH person once said to me, “When you ask people to speak slower, it’s like your IQ drops 30 points or something. People unknowingly decide that you’re just not that bright because of it.” From time to time, I have found this to be true. Hearing people can hear us, but are they listening? Am I being discounted?

Hearing professionals sometimes think that they know better than we do. Doctors may overlook what we said. New acquaintances may be reluctant to get to know us. Stigma surrounds us. When we can’t overcome stigma, we need to develop ways to command attention.

The following “tips” are part of a presentation I did several years ago at a Hearing Loss Association of America meeting. They are not just for “you,” but also for “me.” I often lack the courage to speak up for myself when I should. And when I do, what I say is sometimes based on a misunderstanding. Then I need the courage to stand up and not slink away in embarrassment. When my mother got old and we went places together, she’d say, in a small “poor me” voice, to merchandizers and restaurants “Do you have a senior citizens discount?” Ordinarily my mother did not have a small voice. She was playing the victim role. My mother learned from an early age how to do this, and I have worked to unlearn it. It’s self-defeating in that you place yourself in a subordinate pitiable position. I have learned, and am still learning, to ask confidently for what I need and want.

There’s internal work to be done. First up, we belong. All people with disabilities belong. We can ignore or reject many people who think that we don’t, but sometimes we can’t afford to. We need to be taken seriously by people who affect our lives. Evoking serious attention is hard. Feelings can get in the way. But we are not our feelings.

Knowing that one belongs engenders confidence. Confidence is one building block of assertion. It means you know what you are doing and are sure of what you know. Assertion is putting forth that confidence. Confidence and assertion can be practiced. If you are a woman, it may feel harder because you are in danger of being called aggressive, which woman traditionally (way long ago, right?) aren’t supposed to be. NEVER apologize, but it helps to be assertively polite.

We can behave differently than how our feelings might “dictate.” We can give off confidence when afraid, just like salespeople and politicians. It’s like the song from The King and I, “I whistle a happy tune so no one will suspect I’m afraid.” Sometimes I fear making a phone call to someone I don’t know well and consider important (read: more important than me). I can usually put it off for a day until I’m feeling more confident, and I do. But I have to do this less and less because I’m not as afraid anymore. I belong.

Audiologists/hearing instrument specialists: Go to an audiologist that you trust. Leave if the audiologist shows signs of EGO (“I know best”). Be on guard if they sell only one brand of hearing aid. Note whether they are listening to you. or if they don’t listen. Tell them what you need in a hearing aid (e.g., if you are most challenged by noise, children, outdoors—where you work and what the conditions are in your employment). They should be asking you these things, but if they don’t, tell them.

At the doctor’s office: Announce your hearing loss and ask for an accommodation if you need one. The law (ADA) says that they must comply. If you need a signer, they cannot simply direct a friend or family member to sign for you. If you bring someone with you, both of you should insist that the person address you directly. Ask your questions, even if you must interrupt. If you are nervous about the visit, rehearse and write down questions beforehand.

For job interviews: Rehearse, look the part. I can’t count the number of job interviews I’ve flubbed. Now I know I should have investigated the employer, known thoroughly what they were looking for in a new employee, and learned to ask questions that would demonstrate confidence, knowledge and appeal. I should have rehearsed. Today, some people (if they can afford one) hire executive coaches to help them land a job and keep one. Barring getting a coach, a smart close friend may suffice for practice. Finally, remember to use the HOH “secret sauce,” hanging on every word and looking directly at the speaker(s). It’s a sign of true interest in what the other person has to say, easily forgotten by hearing people. For us, it’s easy to do. They don’t have to know that if you didn’t look at them closely you might not “hear” all that they are saying.

On the job: Do not isolate. Seek out others in ways that are part of the work culture, as much as you can. If everyone goes to lunch together and if it’s so noisy a crowd that you can’t possibly do it every day, do it once in a while. As you get to know people a few may be willing to lunch with you separately on occasion. Be open about your hearing loss, but don’t talk about it all the time. When socializing, ask friendly questions, particularly in situations in which you know you will hear the answer. Tell friendly people how they can help you. Laugh at yourself – if you can! If you can’t, don’t.

Questions: On the job or anywhere else, as one who belongs, you deserve to have your questions answered, for whatever reason, even if the information has just been announced over the PA system. Don’t assume you will figure it out without asking. Don’t assume that everyone knows the answer and you don’t. Consider whom to ask and how to ask. Specify what you want to know. For example, don’t say “Can you tell me what happened in there?” Instead say “Did Sally change the deadline for the project?” or “Did Dave say we’re scrapping option two?” Smile.

These suggestions are simple and maybe everyone reading this knows these things. For much of my life, I didn’t. Take what you like and leave the rest.

The Basics

Face the person to whom you are speaking.

If you generally speak fast, speak more slowly.

Simply speaking more slowly helps and maybe raising your voice a little. When asked to speak louder, some people don’t do it because it feels like shouting. I have trained myself to say, “I am hard of hearing so I’d appreciate your looking at me when we speak, and it would help if you spoke slightly louder and slower.” When I am out and about, though, and ask someone to speak more slowly or to speak up, some do nothing.

Stand or sit in light, not shadow, and try not to be where there is “backlighting,” such as sun coming through a window, behind you. That puts you in shadow. The HOH person is most likely to be reading your lips as well as listening and must see your face.

People in a group should speak one at a time, if possible. If you are in a noisy crowd and are speaking to a HOH person, suggest that you move to a quieter area or room.

“Never mind” is not a good response to say to someone who asks you what you said. What you said was likely trivial or silly or maybe profane and you don’t want to say it again. But it’s frustrating for us who want to hear. You can minimize it – “I was just saying that it’s hot in here,” or “Frankly, I was swearing at what happened.” When it’s the punchline of a joke, it’s harder, but please, just say it. It’s the human thing to do.

Arlene Tenant said: “’Never mind,’” is the most hurtful thing you can say to a person with hearing loss. Many times, I struggle to hear or understand what someone said. I ask them to repeat things more than once. They become frustrated and say, ‘Never mind.’ It is at that moment the gravity of hearing loss weighs on me heavily. I feel as though I am not worth their effort. I feel shut out. I know I am often frustrating to deal with but please, don’t give up on me.” Sandy Welches agrees. “I didn’t hear what you said. I know you think it’s trivial or may even be silly and perhaps you are embarrassed. But we are either conversing or not, right?” Linda Fowler says, “I ask you to repeat, and you say, ‘that’s not important.’ So why did you say it in the first place? That demeans me.”

For the public, Marianne Morgan has some suggestions. “Speak distinctly and improve the experience of the other person dramatically with a little bit of patience and paying attention to the exchange. ‘Pay attention’ would be very nice.”

To the parents of a child with hearing loss John Backus said: “Be patient, care about what the child is going through and have compassion.”

Kim Ingersol said: “You can have perfect hearing and be ‘hard of listening.’ If you’re talking with people, be present. Some of the best listeners I know have hearing loss.” Being present seems to be a problem for many people in this world. HOH people tend to be present for others. Someone once remarked to me that paying close attention to what others are saying is our “secret sauce.” We are looking closely at the person and are determined to hear them. We stand out as good listeners.

If he could, Ernie Swanson would plead with people to “keep the volume up - don’t let your voice drop off at the end of a sentence. Speak up plainly in the first place. Try to think in terms of what the guy in the back row is going to hear.” Good advice.

I recently attended a lecture at which the speaker showed a power point and was given a hand-held mic. It was hard to maneuver both the clicker and the mic. In no time, he put the mic down and asked the crowd if everyone could hear him in the back. When this gets said, most of the time no one will object, but the person rarely keeps the volume up enough for the back row. Although Ernie’s advice stands, the solution would have been for the speaker to have a lapel mic.

Let HOH people tell you what they need. When I tell a stranger that I am hard of hearing some respond as if I had said “I’m having a bad hair day,” as in “Yes, the weather is awfully damp this time of year.” Recently as I was about to explain my needs, a young, wanna-be male dental assistant interrupted with “That’s ok,” to my declaration of hearing loss, as if my assertion of hearing loss was an apology. He was very young, so I let it go, squelching my flash of annoyance.

People sometimes say, “no one can hear in this room,” (usually at a cocktail party/reception). The phrase “no one can hear” is not helpful and clearly not so since we are surrounded by people having conversations and we are having a conversation. It comes from kindness and means that conversation is difficult for everyone here and they want to make me feel better. But I don’t feel better. I feel as though my reality is being ignored.

Helen’s Treen has an expansive wish that could benefit everyone. She would like to see people in media, TV especially, speak so that HOH people can understand and at the same time be better speakers and models for the nation. She says, “My value system is that what you may think is an accommodation to me to speak more slowly, clearly or enunciate, will make you a better speaker. I think there’s a lot of work to be done in working with voice quality. I know that you sometimes must speak rapidly but there are machines that can clean up your speech—run it through a filter essentially - so that more people can hear it better. I’d like to see quality of speech developed to a higher standard. This would translate into everyday situations that are not on TV because people emulate those anchors. People value what they see. Radio, I think is a good example of higher voice performance. We could aspire to that.”

I would caution against saying, “He hears what he wants to hear.” I have never met anyone who is hard of hearing who admits to hearing something and pretending not to hear, even though they may joke about it. It’s too hard to hear in the first place. An HOH woman on Facebook recently posted that she felt great anxiety and exhaustion over “trying to hear” at a group gathering. I have often felt this way and it’s fruitless and self-defeating. I cannot “try” my way out of a physical condition over which I have no control.

There are numerous reasons why HOH people can hear at certain times and not others, even in the same place. Acoustics differ from room to room. Lighting changes during the day. People may be talking at different frequencies and may not be looking at the HOH person. It may be unusually dark in the room, precluding speech reading. Perhaps someone can hear something one time and not another just because of exhaustion. There are situations in which the comment needs to be registered in one’s brain, causing a delay between the words and the understanding. It takes intense concentration to hear. Finally, many of us have likely adopted the strategy of mentally recording people’s cadences, how they express themselves, and what they are likely to say, “around the corner,” and so, hearing perhaps one word, we “hear” more things from people we know and less, at first, from others.

What Friends and Family Members Can Do

Clearly there are almost as many ways of coping with hearing loss as there are people. What families of HOH people can do is explore how one’s loved one is coping. Maybe they need help with their strategies. Maybe they can expand their behavioral repertoire. My partner asked me to repeat whatever I heard her say when I didn’t hear something instead of simply saying “What?” I said I would if she would refrain from laughing at anything that I might have gotten wrong. I am getting better at laughing at myself but it’s hard. Last night at a meeting she said “managers.” I thought she said “badgers” and said so. We were all amused. The practice of repeating back works well because the other person can then make the correction very specifically and quickly instead of having to repeat the whole thing or guess what part wasn’t heard.

These pieces of advice represent a few issues important to HOH people, those with hearing aids and those with CIs as well. We live in a world in which not much attention is paid to improving responses to disabled persons, either individually or as a group. I hope this helps.

Major Federal laws and Regulations Covering Hearing Loss

The disability rights movement began in 1960s. In 1973, Section 504 of the Rehabilitation Act, protected, for the first time, the civil rights of persons with disabilities. In 1975, parents’ activism led to the “Education for All Handicapped Children Act,” renamed in 1990 as the “Individuals with Disabilities Education Act” (IDEA). Finally, in 1990, after much lobbying and countless demonstrations, the Americans with Disabilities Act (ADA) was passed. The three laws have direct impact on individuals with hearing loss in the United States. Two of them, Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act of 1990, are non-discrimination laws. The IDEA mandates accommodations for children in public education.

As I’ve mentioned before, these laws require victims to be the police, sort of. They are “complaint driven” as opposed to enforcement, such as random audits or requirements that institutions submit compliance reports. Complaint driven means that individuals or groups must complain to alert authorities to a violation. But we aren’t really the police. There’s no provision for a citizen’s arrest. Forgive the acronyms ahead, but if you plan to do more reading about this, they will come at you fast and furious.

Regarding schools, the 504 regulations are enforced by the U.S. Department of Education’s Office for Civil Rights (OCR). Although not required by law, it is common for educational institutions to have a written Section 504 plan, describing the aids and services the individual student receives.

The IDEA mandates free appropriate public education (FAPE) in the least restrictive environment (LRE) for students with disabilities from birth to age 21. (Private schools may receive funding to provide some services, but not as extensive as the public schools.) State Departments of Education oversee the programs and report to the Federal Department of Education Office of Special Education Programs (still on the web as of this writing, although we know that the Department of Education is being eliminated). The Federal office collects information that is submitted via a Report to Congress yearly, the last one being in 2024. You can find it online.

While a broad range of disabilities are included, most are specifically listed in the law, with a somewhat blanket term in the list of 14, “other health impairment.” The law requires an individual education program (IEP) for each student. Developed jointly by parents and school staff, it is more specific than a 504 plan and identifies the services that the student receives.

Section 504 tends to overlap with IDEA but can be separate. For example, students who use wheelchairs must be able to navigate them into the classroom, as required by the 504 non-discrimination statute. But if they are performing at grade level and don’t need special instruction, they are not covered by IDEA.

Easy Peasy, right? If you are a parent of a deaf or hard-of-hearing child, all you have to do is work with the school to develop an Individual Education Plan (IEP) and run with it. Not So Fast. As it turns out, not all professionals, such as audiologists and teachers, agree on what’s best.

Delving Further into the Conversations

Out of every 1000 children, two to three are born deaf or hard of hearing, and ninety percent or more of those children are born to hearing parents. It’s difficult for many parents to know what to do. The low incidence of deafness and hearing loss at birth increases parents’ dependence on professionals to guide them. They need information and probably think that they need it fast. Decisions about whether to get a cochlear implant for an infant child with a severe hearing loss may come first. Cochlear implants or not, parents of children with hearing loss must make multiple decisions affecting the development of language and communication skills.

The best advice I’ve seen is from the Ohio Coalition for the Education of Children with Disabilities – “If you feel that someone is pushing you to choose an option based on how things worked out for them and their child, find someone unbiased to talk with about your concern.”

Parents get information from doctors, audiologists, speech-language professionals, and teachers, all important but sometimes not in agreement. There may be choices between “an ASL-based bilingual-bicultural approach” or a “listening and spoken language approach.” It is my understanding that the spoken language approach for deaf children has been debunked in favor of “total communication,” which combines both ASL and spoken language. For HOH children, it may depend upon the degree of hearing loss.

Some researchers believe that professionals can be biased in one direction or another, primarily with a bias against ASL and in favor of spoken language across the board. The National Association of the Deaf (NAF) is uppermost among organizations that fight against “language deprivation.” There is a window opportunity for optimum language acquisition from birth to about 2 ½ years. The use of ASL can facilitate comprehensive language learning. NAF cites research that acknowledges the benefits of cochlear implants for young children but suggests that the benefits are not universal for all who get cochlear implants, citing the importance of deaf and HOH children with cochlear implants learning ASL as well.

IDEA mandates free appropriate public education in the least restrictive environment (LRE) for student with disabilities eligible under this statute. I suspect that this provision is an oppositional outgrowth to the former “warehousing” of disabled children in US history. Yet, in today’s world, there are meticulous choices to be made among well-meaning people. In last week’s blog I described the struggle that Carol Brown’s mother had to put her in an inclusive classroom, followed by further struggles to get that classroom up to par with suitable accommodations.

It’s hard to know entirely what’s happening “on the ground” right now. We can assume that middle-to-upper class communities offer more, and more distinct, educational services and accommodations. Deaf children and HOH children are about one percent of children nationally receiving IEPs via IDEA. Most children in the US served by the IDEA are served via inclusive classrooms, mostly full-day but some part-day when they are provided special services.

If that isn’t all a parent has to be concerned with, I should mention that some children who qualify may not be receiving any public school services at all. This is unacceptable and parents have a right to demand the services their children should have. My advice: love your kid, do your research, and stick up for your rights.

Resources

Parent Directed – If you are not in Ohio, you might consider checking out your state’s Dept. of Education and other advocacy groups.

My Child has been Diagnosed with a Hearing Loss. What do I Need to Know? Ohio Coalition for the Education of Children with Disabilities (OCECD) Newsletter April-June 2019. Excellent article about things to know and choices to make. Not outdated at all despite being 6 years old!

Dispute Resolution – Exploring Options. Ohio Coalition for the Education of Children with Disabilities (OCECD) Newsletter April-June 2018. With any luck, you won’t have a dispute, but this is good advice.

www.babyhearing.org - Parenting a Child who is Deaf or Hard of Hearing - Boys Town National Research Hospital

Your Child and Section 504 of the Rehabilitation Act of 1973. Ohio Coalition for the Education of Children with Disabilities (OCECD) Newsletter July-September 2021.

National Association of the Deaf. www.naf.org This is an advocacy organization that backs up its goals with valuable information. They are especially concerned with language deprivation among infants and very young children, which occurs more often among poor people and people of color.

Professional Directed

Golco, S. and Montiegel, K. Educators Perceptions of Supporting Parents of Deaf and hard-of-hearing children. Deafness and Education International, v. 26, 2024, Issue 2.

American Speech-Language-Hearing Association. (n.d.). Language and Communication of Deaf and Hard of Hearing Children [Practice Portal]. Retrieved August 29, 2025 from www.asha.org/practice-portal/professional-issues/language-communication-deaf-hard-of-hearing-children/. NOTE: This is a very deep dive, 53 pages long! It’s written for professionals, but available to all, so if you are curious, there it is.

Page, T.A., Harrison, M., Moeller, M.P., Oleson, J, Arenas, R.M., and M. Spratford. Service Provision for Children who are Hard of Hearing at Preschool and Elementary School Ages. Language, Speech, and Hearing Services in Schools. 2018 Oct. 24:49(4): 965-981. Note: This is a complex article about a research study that examined services of Speech-Language Pathologists, teachers of hard of hearing children, and the role of audiologists.

I interviewed parents Ann and Mike Brown in 2014 when Carol Brown was six years old. At 18 months, Carol received a noisy toy and ignored it. Her parents had her hearing tested and she was diagnosed with a bi-lateral hearing loss. From then on Ann sought and got lots of help for Carol, along with lots of frustration.

Preschool arrangements were available in the Brown’s middle-to-upper class suburban community, including speech therapy support and home visits from the County Department of Health’s Help Me Grow program. That fall, with her first hearing aids Carol delightedly heard the fall leaves crunch for the first time.

When Carol aged out of Help Me Grow at age three, the school district provided private preschool education plus a speech therapist with an Individual Accommodation Plan (IAP), required under the Federal Individuals with Disabilities Education Act (IDEA). The private preschool had an FM device that the school used with her. The microphone hung around the teacher’s neck and connected to receivers attached to Carol’s hearing aids. Such FM systems are not unusual in schools nowadays and sometimes the other children in the class also have microphones so that the children with hearing loss can hear classmates too. Carol did well in preschool, but Ann faced a dilemma when it came to kindergarten.

Carol has mild-to-moderate hearing loss and her doctor, a leading Ear, Nose and Throat (ENT) specialist, said that she did not need a class for deaf children. The auditory/verbal approach, which Carol would get in a regular public school, emphasizes listening and speaking rather than combining it with sign language (“total communication”) Ann thought that since they didn’t know if Carol’s hearing loss would get worse, and she is capable of hearing with hearing aids combined with assistive listening devices, they should go with auditory/verbal at the start. The school representatives were pushing for special needs classes.

The law was on the Browns’ side. IDEA regulations oblige states to develop rules that ensure "that to the maximum extent appropriate," students with disabilities are educated with children who are not disabled. Carol was placed in a regular class, without adequate equipment in the classroom for about a month. Her teacher was not using an FM mic. Carol began objecting to going to school because she couldn’t hear. The school said Carol had “separation anxiety,” but Ann objected to this explanation. The proper equipment was finally put in place.

Ann fought to get an aide on the playground with an FM mic since Carol couldn’t hear the aide calling the children back into the school. Carol couldn’t be allowed in the sandbox or near the water table so that no one—Carol or the other kids—could accidentally get sand or paint or water in Carol’s hearing aids. An intervention was needed regarding Carol’s speech therapy class. Placed with five other children from regular classes, Carol was unable to hear them all. Her doctor wrote a note requesting an adjustment and she was given one-on-one or one-on-two speech therapy sessions.

Linda

Older people’s stories of childhood schooling are markedly different. Linda Fowler’s parents never noticed her childhood hearing loss, even though her mother had a severe loss, because Linda helped her mother read lips and learned it herself at the same time. When Linda’s hearing was tested in school, there was hesitancy to diagnose a hearing loss. “Well, you must have a cold,” they’d say. She didn’t get hearing aids until she was in her late 30s and began suffering from tinnitus. Today Linda gives lectures far and wide to educate people about hearing loss.

Susan

Susan Bungard began losing her hearing when she was a small child, at age three or four, likely caused by a bad bout of measles. She spoke well in her toddler years, so her family denied the loss by convincing themselves that she simply didn’t listen. Susan got her first body aid with a clunky battery pack in first grade and learned to read speech very well. Yet by 6^th grade in a mainstream class, Susan was lost educationally.

Susan’s parents sent her to a school for children with hearing loss, where she learned how to sign, but she was very ahead of those students, so she went back to a regular school on a part-time basis. For three years she went to two schools, one mainstream and the other a deaf program, taking Greyhound and city busses to get to and from both places. When the deaf school lost some teachers, Susan ended up in a regular high school and eventually took summer school classes in order to graduate on time. But her school struggles hadn’t ended. When she went to get her master’s degree in social work, compulsory for retaining her job, she had to fight with the school to get interpreters in the classroom, even though it was then required by the Americans with Disabilities Act, passed in 1990.

Marianne

Some childhood school memories of a mainstream class are painful for Marianne Moore who got her first hearing aids at age 6. Children played a game called “whisper down the alley.” “I felt excluded and unable to play the game. It would have been helpful for someone to tell me to ‘make up something’ which was the point of the game. I tried to faithfully whisper what I thought I heard—psst kind of sounds. A little bit of adult support would have been helpful in that,” she says.

In a high school biology class, the teacher insisted upon putting Marianne in the back of the room with the other smart kids. She says, “It was fortuitous that I couldn’t bend the rules but still could be successful.” She loved biology. Hers was an individual success story, but it could have been quite different for someone else.

Marianne decided to become a nurse despite her parents’ wish that she be a doctor like her brother. She says “I think had the note takers been around, had apps been around to make the classroom easier to manage, even an app that turns speech into text, or someone to transcribe notes, I would have been a doctor. No doubt about it. Am I happy with what I chose? Yes.”

When she applied to nursing school Marianne was tested to see if she could hear needed sounds. Today many sound-related medical devices have special settings for hard of hearing health care workers. She would have benefited from the ADA requirement to have notetakers in the school, but the ADA didn’t exist then. She carried a heavy (5 lb.) tape recorder to her classes. “It was laborious as hell. I’d record the lectures from every class and then go home to transcribe them. I was afraid I would miss something. The professor would frequently turn to the board and talk at the same time, eliminating the possibility of lip-reading.”

Kim

Kim Ingersol, at 38, was the youngest adult I interviewed. Even though her hearing loss was detected by day care providers when she was five months old, her father thought that her hearing loss was “in her head.” He wouldn’t go anywhere with her if she was wearing her hearing aids. Her parents divorced when she was young. Kim’s mother tried learning sign language but found it too hard, so she determined that Kim should speak. For a while Kim’s brother (one year younger) let her mother know if Kim was upset or even hungry.

In school, Kim benefitted from informed instructional methods of teaching children with hearing loss. Placed in a school class for kids with hearing loss at all parts of the spectrum, she thrived. They started right away with “total communication,” which includes both signing and verbal training. Research shows that children who can’t hear advance more quickly with sign language while picking up spoken language alongside it. It is much harder for children with hearing loss at moderate levels or more to learn from verbal instruction alone.

Kim attended a mix of mainstream and special classes. She had notetakers, sign interpreters and a dedicated teacher who would “troubleshoot” for the hard of hearing kids in the mainstream classes. “They were our voice, basically.” Being with other deaf kids felt like a community. She knows deaf people who grew up never knowing any other deaf people and thinks of it as a loss for them. Had they grown up with deaf and hard of hearing people, they could have known for sure that there were other people like themselves, not to mention having the camaraderie that would allow them to compare notes about their struggles and successes.

In Kim’s high school one teacher refused to accommodate his teaching to her needs and eventually he removed her from his class. No action was taken because he was about to retire. Kim went on to attend a small liberal arts college that had about 800 students. She was determined not to depend on note takers or interpreters during college “because the real world, I knew, would not have that.” Nonetheless she was in an environment that fostered individual attention. There were very small classes, sometimes having only three students. She shared notes with other students and had many meetings with her professors who responded to her requests for help.

Community

Both Marge Logan and Susan Bungard treasured their experiences in higher education for the deaf. Marge transferred to the Rochester Institute of Technology (RIT) to be part of the National Technical Institute for the Deaf (NTID), a part of RIT. She learned sign language there, and even after mainstreaming into the hearing school at RIT, she still had the support of note takers and interpreters using sign language. It was a comfortable time that she missed when she graduated and moved away to join the hearing world. Susan also referred to a world opening to her in discussing her alma mater, Gallaudet University in Washington, D.C., a university for the deaf. Even though she had been deaf since childhood, only at Gallaudet did she learn to sign.

Next week: Laws and resources for parents & what’s happening on the ground today.

Resources

Americans with Disabilities Act (ADA) Guide to Disability Rights Laws. ADA.gov

Help Me Grow

https://www.helpmegrow.org/

Individuals with Disabilities Education Act (IDEA). https://www.ed.gov/laws-and-policy/individuals-disabilities/idea

The History of the Americans with Disabilities Act. Disability Rights Education and Defense Fune. https://dredf.org/the-history-of-the-americans-with-disabilities-act/ (A moving story)

Having an invisible disability is weird. Dr. Rachel Levin (see below) reported that once she was knocked to the floor by someone behind her who asked her to move and became angry that she didn’t. The other day, in a crowded restaurant where I was waiting for a table and others were getting take-out, a woman in front of me told me that someone behind me was asking me to move. I was enormously grateful. I can’t hear from behind, and neither could Dr. Levin.

There’s a Facebook group, The Emotional Side of Hearing Loss, to which I belong. People report shock and grief, especially in the face of sudden deafness or new, horrible “could hear nothing but cacophony” experiences. Many suffer from tinnitus. They get sympathy and advice and “I’ve been there” responses, which are good. Even though I might feel isolated sometimes, when I’m on this and other places online, I am not alone. That’s why I enjoy Hearing Loss of America Association annual conferences. My people are there. All meeting rooms are looped and there is captioning for all presentations. We all need one or more of these accommodations. It’s not just me.

Many times, I’ve asked for the use of a mic or ask that the loop be turned on in a meeting room at church. Most people assume it’s only for me. It’s my fault that the mic must be handed around from person to person during Q and A. Sometimes afterwards a friend will confess to me privately that they couldn’t hear either and they thank me for asking for the mic. I am a spokesperson for a silent group of hard of hearing persons who are content to rely on my…what? Courage? Humiliation? My age and my curiosity spur me to speak up. Why go to a lecture or meeting that I can’t understand? I want to know everything, and I want to know it now.

On TV I’ve seen people saying that they are grateful that they have [insert disability here] because they’ve learned so much and their lives are richer for it. “Really?” my cynical mind responds. I retain the right to feel sorry for myself, at least sometimes. And yet.

Gratitude for living at this point in history is always with me. A hundred years ago, I’d mostly be sitting in a room by myself, either well cared for or not, but still limited in my engagement with the outside world. Friends of mine with long-term loss started out as children wearing clunky aids attached to a neck loop. Before that, there were cornucopia horns held to one’s ear, humorously depicted in occasional cartoons today. I have Bluetooth in my hearing aids that enables me to hear quite well on my phone, a remote mic for lunches with friends, and an induction loop installed in my church. Plus, I can be useful about what I am passionate about. It may help me live longer.

A recent article in The New Yorker features scientists Paul Hewitt and Gordon Flett, who have collaborated throughout their careers in studying perfectionism. They went on to study the psychology of mattering. A perfectionist may find that whatever they do, nothing is ever good enough. Some people have committed suicide because they felt that they weren’t good enough. Flett “has come to understand mattering as a counterpoint to perfectionism, a more viable way to arrive at a sense of self-worth. One doesn’t have to be prefect; one just has to matter to someone. Just like perfectionism, one can work on this by focusing on doing things that matter in the world.

I used to teach about poverty, welfare, and women’s economic well-being, using statistics about what little could be bought with welfare benefits, the low poverty line, and public policies that could help. I scoffed at people who seemed only to care about groups they knew personally. Then the Altadena, California fire destroyed the house and belongings of dear friends of mine. I wanted to rush to them. I cried. I scoured all press reports about it. I called them as often as I could without annoying the hell out of them. As it is with any disability or other condition that begs solace and help from others, those closest care the most. Irritating but true. Progress toward accommodations for people with hearing loss usually comes from those who have it or love someone who does. Hearing loss and the things that both individuals and society can do to accommodate it matter a lot to me, bringing me closer to the state of being “grateful” for my hearing loss.

Recently I watched a recording of a research panel discussing the “emotional side” of hearing loss. Writer and comedian Gael Hannon acted out tiny snippets of hard of hearing people annoyed with other people’s responses to their hearing loss, especially the phrase “Never mind” when one asks for a repeat, a major pet peeve. The other panelists discussed mental health and hearing loss.

Researchers are looking at loneliness and isolation among people with hearing loss, the importance of communication and not just the “word recognition” that is part of the hearing test. The research reported didn’t touch directly the ups and downs of everyday hearing loss, the emotional side. For that, one needs resilience for what sometimes feels like a roller coaster. I have read that resilience may be a large factor in living a long life, sometimes regardless of eating habits and exercise and the like. Social contacts are also essential.

Dr. Rachel N. Levin, a biologist who studies bird song, lost the hearing in one ear suddenly 10 years ago and then in the other ear 3 years ago. Neither sudden deafness responded to steroids, the usual treatment. Sudden deafness in both ears is extremely rare, but it happened to her. Resilience may as well be her middle name. These are excerpts from a blog on the website of the Hearing Health Foundation.

Adjusting to this has been a painful, isolating journey of accommodation and mourning. If I can hear any part of birdsong, my brain has recalibrated to recognize it by its pattern, rather than its melody.

She goes on to say:

I have always loved figuring out ways of finessing around unexpected challenges (one of the many joys of fieldwork in remote places!), but in this case I deeply resented having to do any of this. Now, when I have met the challenge to the best of my ability, there are still the feelings of profound loss to be dealt with.

I have found some hidden surprises and perks to losing my hearing. I am taking American Sign Language (ASL) classes at a local community college as a preemptive strike against the profound deafness that I may experience in the future. I love learning new things and ASL is a beautiful, rich language. …. As important as it is to allow room for grieving and anger, I also find myself on a path to a new, rich life. I am humbled and excited by the possibilities this opens to me and grateful to those who are assisting me in this journey.

Dr. Levin brings both grief, realism and resilience to this piece in her discussion of how she approaches her hearing loss. Hearing loss is never easy. Day to day there are assaults, emergencies and what can feel like insurmountable grief. But we are all broken in a way and denial is a dead end that changes nothing. I still hate having a hearing loss, but I appreciate the gifts I’ve gained from living this way and the opportunity to do things that I hope matter.

Resources

Dr. Gordon Flett, “Why So Many People Don’t Feel Like They Matter,” Youtube.com – Passion Struck - @John_R_Miles. 2025.

Hochman, David. “A Tale of Two Grandmothers: My grandmothers lived completely different lives, yet they goth lived to be over 100 years old. How?” AARP: The Magazine. Vo. 68. No. 4C, June/July 2025, p. 50.

Jamison, Leslie. Enemy of the Good. The New Yorker, August 11, 2025.

Dr. Rachel N. Levin, On Losing a Sense, https://hearinghealthfoundation.org/hearing-restorationproject Rachel Levin is professor emerita of biology and neuroscience at Pomona College in California.

A colleague from what has become a national group within Loop Eugene/Center for Hearing Access in Oregon, called me on my statement that cochlear implant surgery no longer removes all residual hearing. I did read that but neglected to use enough sources. Remarkably, if you do research you’ll find different answers from different people. The answer appears to be “sometimes.” The variation likely is due to different surgery techniques, a person’s particular anatomy, and pre-existing conditions. My apologies for misleading you.

Susan Bungard, former director of the Center for Deaf and Hard of Hearing at the Cleveland Hearing and Speech Center, was born with hearing loss. She learned to sign and read lips. I had a signing class with her and didn’t realize that she wasn’t a hearing person until I was told. Later, because she had severe tinnitus and heard that a CI might alleviate the noise, she decided to get the implant. She had hesitated because the Deaf Community viewed implants as an indication that “you can’t accept us as we are.” But if it would stop the dreadful ringing of tinnitus, she was for it. The ringing stopped completely when she got the implant. It was replaced by a hum when the CI magnet is off, but for her the hum is nothing compared to the ringing.

After the CI implantation, Susan reported that “At first, everything was one ball of sound.” What does this stuff mean? she thought. There followed a series of events such as: “This is the doorbell; this is a dog barking.” Once when driving, she thought her car was making a terrible noise. It was raining quite hard and “everything was horrible.” She drove under an overpass and the noise stopped. “It’s the rain!” She was hearing rain for the first time.

Susan shares that her implant has reduced her isolation, the isolation of deafness. “People can become isolated in their own families. I do too. I’m the only deaf person in my family and when we have family affairs, I don’t know what’s going on. We have 50 cousins on one side. They don’t sign.”

After years of life with HAs and using sign language, Marge Logan’s hearing had deteriorated to the point where she was eligible for a CI, so she got one. With her CI, obtained much later in life, Marge heard cicadas for the first time and almost ripped off her connection because the noise was so awful. Other new noises included the beeping on her George Forman grill, the fizz in pop, the noise of the refrigerator, and the buzz of a bee.

Age is not a barrier to getting a CI. A woman in her nineties reported that she adjusted immediately after the implant was activated. She went shopping. Ernie Swanson was beyond 70 years old when he got his CI because he “couldn’t hear a thing.” With “upgrades” he has had 3 different models (tune-ups), and each was an improvement. He can now enjoy playing bridge and socializing with friends with what he describes as a “miracle.”

Sandy Welches got her first hearing aids in her 30s and having difficulty at work. Her hearing gradually deteriorated and by the time she was in her 50s she was “begging for an implant.” Sandy has a CI in her left ear and a hearing aid in the other. Keeping the low frequency hearing she gets from her hearing aid is a conservative approach that Sandy wants to keep going because she hears music perfectly, which is not always possible with two CIs. “I enjoy my hearing. Am I going to mess with that? Probably one day.” Sandy says that “These natural lows combined with my implant sound like normal hearing to me.” “I, of course,” she said jokingly, “have no idea what normal hearing is.”

The CI changed Sandy’s life “dramatically.” She says, “I can go to the movies now and I stretch myself by going to venues when I haven’t heard very well. When I went to see British films before I’d just get frustrated because of the accents. I talked recently [on the phone] with friends from Hawaii. We haven’t seen them for 5 years. They were amazed.”

Arlene Tenant had a harder time with getting a CI. Over a period of seven years in mid-life, her hearing diminished markedly. Finally, she says, her range of hearing was “about three feet.” Arlene took a hearing test, repeating words and sentences. The audiologist said she could hear too well and did not meet the insurance requirements. She says, “I realized I was an overachiever. I was used to testing well, doing my best, working hard. I was devastated.”

I recognized Arlene’s experience. There’s something about a hearing test that seems to bring out the striver in me as well. It’s a difficult situation and one wants to succeed. I was an A student after all, and anyway didn’t want to hear bad news. No doubt Arlene took many hearing tests before with the hope that her hearing was better or at least not worse, when in this case the opposite was the desired outcome. Six months later Arlene took the test again only this time eschewed guessing. She finally had the surgery. But things did not go well at first.

For six weeks Arlene experienced severe vertigo, taking Valium and Dramamine to help. She couldn’t drive or leave the house unattended. Finally, she had a “fistula repair.” Arlene explained, “When a CI is implanted, the doctor drills a small hole (fistula) through the skull. I guess the wire goes through that hole. They pack the fistula with tissue. During the six-week recovery time, to prevent the tissue from moving away from the hole, you are not supposed to lift anything heavy, sneeze with your mouth closed, or blow your nose on both sides at the same time. I must have done something that caused the tissue to move. Small amounts of fluid leaked through the fistula into the balance area of the ear thus causing vertigo. During the repair, they went in through the eardrum with more tissue to block up the leakage. That is my non-medical explanation of the procedure. Once I had the second procedure, I had a couple of minor bouts of vertigo but then nothing since.”

Arlene was pleased with the outcome after the initial difficult time. She said, “I had stopped going to large parties but recently, I could not avoid going. I was pleasantly surprised that I stayed at the party three hours longer than I planned. I could hear well enough to be comfortable. I was thrilled.”

From society’s point of view, it’s important to recognize Cis for what they are. As Susan Bungard said:

Implants are promoted as a cure for deafness and that’s not what it is. Implants are a piece of adaptive equipment. That’s all it is. Friends don’t understand that I am still deaf and neither does my family. I love my implant, but it is not the cure for my deafness. I am still a deaf person.

When the outside magnet is removed, sound is gone.

Cochlear implants have been approved for children over the age of nine months. The argument for early intervention is that language development occurs within the first four years of life and Cis will help children with spoken language and grammar. Children, and especially infants, who receive implants should receive intensive speech or auditory verbal therapy (called aural habilitation) to recognize speech and other sounds. As Dr. Jennell Vick, Director of the Cleveland Hearing and Speech Center (CHSC) explains, “You are not giving a child hearing; you are giving a child a synthetic-type wiring and they will benefit if you can teach the brain the relationship between the signal and the representation.” According to Dr. Vick, if parents do not follow through with services after the cochlear implant surgery is completed, their children will arrive at kindergarten with “no functional language.” For children, the American Cochlear Implant Alliance recommends 50 to 100 one-hour speech/language habilitation sessions per year for child cochlear implant users. Such sessions teach the child to recognize speech and language and prevent the brain from diverting language-related functions to other senses.

Deaf Culture

Many members of the culturally distinct Deaf Community (distinguished by a capital D) cherish the culture that has flourished among deaf persons who use ASL (American Sign Language). Most in the Deaf Community believe that getting a CI for one’s child is simply an attempt to make the child appear “normal” in society’s eyes when they are already normal. Some suggest that children be allowed to decide for themselves whether to get a CI when they are older and have a better understanding of Deaf life.

In an essay in the Washington Post in 2018, fourteen-year-old Juliet Corwin discussed her experience of being deaf and getting a cochlear implant as a toddler. At the time a Deaf ASL teacher was teaching her how to sign but abruptly stopped after the implantation because of her opposition to it. Corwin wrote, “I will always feel separated from the hearing world in important ways; I have also had to live with feeling excluded by a community that might have provided assurance that I wasn’t alone, that others felt the same way.” Her vocation as a poet was evident at the time when she described her situation: “There is a color between yellow and green that no one can agree on: I think of cochlear implants – hearing but deaf all at the same time.”

The Deaf Community argues that children can develop excellent language understanding skills with the use of American Sign Language (ASL). This is true. What gets addressed by CIs is the addition of spoken language. Evidence supports the claim that there is a “sensitive period” among children for language development, including spoken language, up to the age of four. Children who only use ASL require a different kind of learning to achieve literacy and to speak in a way that hearing people understand. Many hearing parents of deaf children want to enhance the degree to which their children will be able to communicate with them and most of the world around them. It’s a financial choice as well. A 2017 study of working age deaf people in the US found that, although deaf adults’ full-time median earnings were comparable to those of hearing people working full-time, only 53% of deaf people were employed.

ASL is expressive in ways that spoken language is not and is a language that can be chosen as a second language at colleges and universities. Yet it makes little sense to assert that the physical conditions that cause hearing loss and deafness are somehow different than those that cause other disabilities. Society works to alleviate these conditions.

We are all normal and in some ways we all have disabilities. Even though there is nothing “wrong” with any of us, most people seek ways to alleviate or eliminate their perceived shortcomings. In the case of Deaf Culture, the stakes are higher since the language of ASL is the expression of a culture. There is no easy answer

If you are contemplating getting a CI, I suggest that you get the names of a few people who have them or go to an email group such as Say What Club, or a Facebook group to get a sense of what people are saying. And discuss your expectations with the medical team.

Resources

Center for Hearing Loss, CHA.org

Corwin, J. Between the hearing and the Deaf. Washington Post, July 21, 2018.

Position paper: pediatric habilitation following cochlear implantation. https://www.acialliance.org/page/ACITherapyStatement Accessed on August 8, 2022.

Garberoglio, C.L., Palmer, J.L., Cawthon, S., & Sales, A. (2019). Deaf People and Employment in the United States: 2019. Washington, DC: U.S. Department of Education, Office of Special Education Programs, National Deaf Center on Postsecondary Outcomes

Hyde, M. and Power, D. Griffith University, Some ethical dimensions of cochlear implantation for deaf children and their families. Oxford University Press. doi: 10.1093/deafed/enj009, Winter 2006.

Nicholas, J.G., and Geers, A. E. Will they Catch up? The role of age at cochlear implantation in the spoken language development of children with severe to profound hearing loss. American Speech-Language-Hearing Association. Journal of Speech, Language, and Hearing Research, vol. 50, August 2007, pp. 1048-1062.

Position paper: pediatric habilitation following cochlear implantation. https://www.acialliance.org/page/ACITherapyStatement Accessed on August 8, 2022.

Szagun, G. and Stumper, B. Age or experience? The influence of age at implantation and social and linguistic environment on language development in children with cochlear implants. Journal of Speech, Language, and Hearing Research, American Speech-Language Hearing Association, Journal of Speech, Language and Hearing Research, Vol. 55, December 2012, pp. 1640-1654

Szagun, G. and Schramm, S.A., Sources of Variability in language development of children with cochlear implants: age at implementation, parental language and early features of children’s language construction. Cambridge University Press, Journal of Child Language, doi: 10:1017/So305000915000641. 2016, pp. 505-536.

Tomblin, J.B., Barker, B.A., and Hubbs, S. Developmental constraints on language development in children with cochlear implants. Child Language Research Center, University of Iowa, USA. International Journal of Audiology, 2007, 46:512-523

So, in terms of attitudes, the general public doesn’t understand what a hearing loss does to an individual, such as keeping them isolated, keeping them on the periphery, keeping them in such a way that they don’t get to participate in their community. Bernard Henri, former Executive Director, Cleveland Hearing and Speech Center

After my last hearing test, when I was informed that I have severe-to-profound hearing loss, my audiologist told me that I am a candidate for cochlear implants. Despite having interviewed many satisfied and happy cochlear implant (CI) users, I felt scared. I haven’t had to decide since I am fitted with good hearing aids that serve me well, now. But the time may come that I must decide.

Cochlear implants are complex electrical devices with two major parts, one that is surgically implanted into the area above the ear and another that attaches to the implant via a magnet on one end with a tube to an earpiece that fits over the ear on the other. They can restore hearing to people via a bypass of damaged cells, sending signals directly to the auditory nerve. At first, the brain may understand these signals as unidentifiable sound but not voices or other sounds. Repeated visits to an audiologist are required to “map” the device to correspond with one’s particular brain signals to achieve optimal individual hearing. Infants must have hours of training to attach meaning to the sounds that they hear.

The CI user may not recognize voices right away or may hear them as extremely distorted. Over time with training and mapping most people appreciate what they can hear compared with almost no hearing capacity before the implant. Once they can distinguish voices, a person with an implant must get used to the way voices sound with the implants. Some people have both a CI and a hearing aid, some have two CIs. Cochlear implants can easily be used with Assisted Listening Devices (ALDs). In some situations, involving medical complications “reimplantation” is required and most of these are successful. Overall, failure rates for CI devices are less than four percent and the medical failure rate is less than three percent.

I introduce this topic with John Backus’ story, which is not just about cochlear implants. He was born to hearing parents who didn’t understand hearing loss and tried to deny its existence, and a school system that was not designed to cope with hard of hearing students. I first met John when he was retired due to a disability but close to the usual retirement age.

In kindergarten John was hyperactive. He didn’t know what was being asked of him. After his teachers convinced his parents to have his hearing tested, he got a hearing aid, with ear molds attached by a wire to a clunky device in his shirt pocket. Then they transferred him to a special school for children with hearing impairment, where, in first and second grade, he thrived.

John but was sent back to public school for third grade, because, he surmises, his parents could no longer afford the special school tuition. Back in public school, John’s teachers encouraged children to overcome their handicaps, whatever they were, on their own. He became adept at reading lips. Still, he was accused by parents and teachers of “acting retarded” because he asked a lot of questions. Since school testing proved he wasn’t retarded, they would scream “Don’t act like it.” He was punished for his “childish behavior.” He says that fighting back “was the only way I knew how to defend what self-esteem and dignity I was trying to develop and hang on to. The result was frequent violent arguments and more punishments.”

In high school John got two new hearing aids after his mother had saved enough money for them. They weren’t clunky like his first one, but he still had to read lips and be close to speakers. He missed getting his picture in the school yearbook because he missed the verbal-only announcement.

Around that time, John’s father obtained a copy of the 1971 Zenith record Getting Through: A guide to Better Understanding of the Hard of Hearing, in cooperation with Zenith hearing aid sales. To this day, John talks about how this record helped his dad to understand. Now audiologists can replicate on a computer an illustration for family members what their hard-of-hearing loved one can hear and not hear.

John went to night school for electronics and became an electronic tech, but he was held back from advancement because he didn’t always understand explanations when he could not be close enough to read lips. “Don’t worry about it, we’ll tell you when you need to know,” was a common response to his requests for clarification. The company laid him off twice.

John finally got a job with a cable company in 1987 and worked there for 24 years. They eventually transferred him to warehouse work. Heavy lifting and stress led to back injuries, surgery, and disability benefits and finally disability retirement.

In 2004 John experienced the full loss of hearing in his left ear. After a great deal of research on his part, in 2010 John had a cochlear implant operation.

Here are John’s words about the surgery:

The surgery involved pulling back a flap of skin behind the left ear and using highly specialized microscopic x-ray equipment, drilling a small hole thru the bony structure behind the ear down into the space where the stapes bone contacts the Cochlea, then the 22 channel electrode was inserted thru this hole into the snail-shaped Cochlea, and the implant part at the top of this electrode was slipped into the space under the skin flap. This part has a coil and a magnet, which is used to hold the outer coil and magnet from the processor onto it on top of the hair and skin when everything heals up. It was sutured back and bandaged and healed in two weeks. I went back for the activation and received the new processor. After the activation and first mapping I noticed sounds in the left ear for the first time since that fateful day 6 years earlier.

The first sound was the high tinny metallic voice of the audiologist, then I was startled at the loud ness of the turn signal in my ca r! After that I started listening to the TV and radio but was unable to comprehend any speech the first few days. It all sounded like gurgling under water. A few weeks later I began to discriminate parts of the ballgame announcer on my car radio as I drove one evening, and that was a nice experience. Since then, I've gone back for several more mappings, each one improving the audio quality and range of frequencies the electrodes were able to transmit to the cochlea.

By summer of 2014 I could discriminate speech almost perfectly in the implant alone, without the right hearing aid. It's still a bit high and tinny, but I'm hearing low frequencies too like airplanes and thunder without any problem, although it all has a high tinny artificial feel to it, compared to the more 'normal' full bodied sound I still get in the right ear through the analog hearing aid, which just amplifies normal sound.

At home in a condo complex in suburban Cleveland, John has “looped” his home and installed mirrors at front and back doors to allow him to see anyone approaching. He pursues his hobby of photographing snowflakes and wildlife.

Cis and Residual Sound and Music

When I first started interviewing people with Cis, getting an implant meant that any residual hearing would be lost, leaving one without any hearing when not using the CI. Also, for many, hearing music properly was lost. Due to new surgery techniques, the CI operation no longer removes residual hearing. But the recognition and enjoyment of music, which requires a more complex auditory signal than speech does, is still in the process of improvement. After implantation, individual practice in music recognition, starting with the simplest previously known melodies, can help. Still, according to research conducted by the Hearing Health Foundation, “…CI technology struggles to accurately produce finer sound details such as pitch and timbre. For many CI users, music sounds inexpressive or even unpleasant.”

Next Week: Satisfied users, infant implantation, and opposition to cochlear implants.

Resources

Lane, C., Zimmerman, K., Agrawal, S. and Parnes, L., Cochlear implant Failures and Reimplantation: a 30-year analysis and literature review. The Laryngoscope 130, March 2020, The American Laryngological Rhinological and Otological Society, Inc., pp 782-789.

U. S. Food and Drug Administration, Benefits and Risks of Cochlear Implants. https://www.fda.gov/medical-devices/cochlear-implants/benefits-and-risks-cochlear-implants, February 9, 2021.

https://hearinghealthfoundation.org/blogs/personalized-cochlear-implant-care-grounded-in-music-based-benchmarks

In the excellent book for people with hearing loss, Hear and Beyond: Live Skillfully with Hearing Loss, Shari Eberts and Gael Hannon provide a lot of information and describe situations in which hard-of-hearing (HOH) persons can help themselves. They are forthright in their theme of insisting upon one’s rights, even if it requires a “MindShift.” My favorite, associated with not bluffing, is “I deserve to hear and be heard. I deserve to participate.” Although I partially disagree with them around the edges, particularly one edge regarding bluffing, I recommend this book.

This week I’ll share some of my experiences and those of people I’ve interviewed. Although I am quoting people as exactly as I can, choosing a few sentences out of an entire interview can be seen by the interviewee as a distortion. So, to be cautious, I use pseudonyms for everyone. But there is no “composite” person, and I do my best to tell you what they said.

My spouse has a large family, all of whom live in England. They are lively and fun and speak rapidly. At her sister’s house, six or more adults might be standing around in the large kitchen, a room popular for conversation. If I get close enough to one person to hear them, I can’t hear a response from someone else. I’m often just a bit too far away to speech read and then it’s sketchy since they speak rapidly and their English accents prevent me from doing it well, let alone understanding British slang. It’s common for someone telling a joke to lower their voice for the punch line, and in England the punchline often involves slang anyway. I probably look like a deer in the headlights much of the time. And yet we enjoy each other’s company.

Three of the people I met with mentioned notable instances of bluffing, two of them for the purpose of hiding their hearing losses. Social stigma is very powerful. Gladys Ashwood, a part-time university instructor, did not tell her university students about her late onset hearing difficulties and occasionally felt the need to bluff. She said “It wouldn’t be a problem to tell them because they are college students. I’m embarrassed now since I’ve never said I have a problem with hearing. Usually if I can’t hear I say, ‘Could you say that so that the whole class can hear?’ The kids do mumble and that can be the case. I feel awful when I can’t hear them and sometimes just nod and say okay when I haven’t heard. This year I’m going to tell them on the first day.”

As a young mother, Jane Davis consciously hid her hearing loss. Her behavior could be interpreted as “stigma management.” “Those years when I was spending time with other mothers, I wanted to remain normal,” she says. “I pretended [to myself] that it was just temporary, it was going to go away tomorrow. That it fluctuates, which it does. I worked harder to be part of the group. I was a little more out of conversations. Later, I told them. People were calling on the phone and I couldn’t communicate on the phone at all. When I got my book offer my husband took the call. I was very much in denial.”

Warren Newsome tries to be socially accommodating around people. Since his hearing worsened, he became good at bluffing. “I do not want to be a fake personality,” he says. But sometimes he’ll respond to someone with a phrase like “that’s the way it goes.” “It’s ruining my character, and I don’t want to do that,” he says, but for him sometimes it is better than saying “I didn’t understand a word you said.”

The most extreme example of bluffing I ever encountered was in the book, Shouting Won’t Help, by Katherine Bouton. She worked for 22 years at the New York Times as an editor and writer. Today she has a cochlear implant and is a leader in the “field,” as President of the successful and huge New York City Chapter of the Hearing Loss Association of America. Now she writes and speaks about hearing loss. As her hearing got worse Bouton’s hearing aids became less effective. She began bluffing in various ways at work, asking people to email their thoughts and conclusions after a meeting, reading lips as best she could, surmising what was said at large meetings, and using email a lot. On the phone, sometimes for an hour, she’d murmur things like “That sounds good.”

Bouton’s audiologist and psychotherapist offered solutions to help her hear better, but all required revealing her hearing loss, so she rejected them, one by one. Then she was assigned theater editor, requiring her to attend two to three plays a week and review them. She read the plays in advance and, having “the best seat in the house,” she could read the actors’ lips. But at musicals the music came across as cacophony. She did this for a year. When a new boss arrived and said she wasn’t a “team player,” she knew that it was the end. She could have been given accommodations under the Americans with Disabilities Act (ADA) but that would have required her admission that she had a disability. She left the paper. In the book she says, “I didn’t want my disability to define me.” I can identify (See blog post “Camaflage Hair.”)

At a party a party buffet table, I asked a friend how she was. I smiled and nodded at her response. My friend replied, “You didn’t hear what I said, did you?” True. She then faced me and told me that she’d been in the hospital having treatments. I was grateful that she saw my lack of sympathy as out of character. Likewise, once my sister-in-law reported very serious news about her husband’s health. When she noticed my mild reaction, she repeated her remarks to make sure I understood. People who know you may do this. But maybe not.

When I was growing up and my family gathered my grandmother never said much. I thought that she was just a quiet person. She was a heavy-set immigrant from Germany who wore old-fashioned clothing and her hair in a net. I always thought of her as old. Looking back, I realize how she was affected by her hearing loss. On a one-to-one basis, she could be talkative. With the family together she said little, occasionally checking to see whether her hearing aids were working by putting her hand over them and making them squeak. I felt embarrassed for her. I hated that. I see now that she was trying to hear, as are many people with hearing loss who find no alternative but to let themselves get lost in the crowd. My grandmother feigned quiet contentment.

Expert advice for coping with a crowd, such as a party in someone’s home or a reception, is to take a person into a corner, another room or quieter space to talk with them. I find that this tactic sometimes suggests, even with the hearing explanation, that the conversation is going to be way more intimate than appropriate for the moment. One or both people may feel trapped. When following this advice, I have occasionally subjected myself to conversations in which I had little interest and no polite way to extricate myself.

At a noisy wedding reception, held outdoors under a tent, I “listened” to an in-law’s plans for her daughter’s wedding. I could catch a word here and there, but extraordinarily little. Short of dragging the woman from the festivities to stand under a hot sun, I was at a loss. I didn’t tell her that I couldn’t hear and that it would be fruitless for her to speak louder in the noisy room. I couldn’t tell her that she should stop talking to me. In any case, many people do not stop talking when one tells them that you can’t hear. They think that they are talking louder. They sometimes say, “No one can hear in this room.” I know that they mean it’s hard for everyone. Yet it’s difficult to hear people say this, knowing that my experience differs greatly from theirs. Yet this memory is a sad one.

I try to avoid what I view as the most abhorrent phrase in the English language for people with hearing loss: “never mind.” Repetition of a trivial remark makes some people feel self-conscious, but I can’t know that. There are times that I don’t ask “What?” knowing that there is no hope in a temporary situation for understanding what was said, saving us both some excess energy. Short of isolating oneself or feigning distraction or disinterest, bluffing becomes a good defense mechanism—sometimes.

A few years ago, I asked my audiologist at the time whether I should take a lip-reading class (now called speech reading). He said that it would likely do me little good since I was probably doing it automatically already. So I didn’t. Now speech reading and “aural rehabilitation” have come up a lot. One online group acquaintance has told me that speech reading could drastically reduce or eliminate the need to bluff and thus remove what is perceived as the stigma of hearing loss. It’s all on us. So, I will take a speech reading class and report back. Aural rehabilitation has to do with focused listening despite distractions, among other things. If I can find an affordable class in that, I’ll pursue it and let you know how it goes.

Bluffing is tricky. Marge Logan, who has had a serious and worsening hearing loss her whole life, has a cochlear implant. She was surprised to learn that hearing people bluff. As a former hearing person, I know this. Late for work, a guy rushes to his car in the driveway and spies a neighbor a few houses a way, waving and saying something to him. He calls back “have a nice day” and drives off, not even wondering what the neighbor said. Maybe he should stop to find out. Maybe none of us pays enough attention to each other. But he drives off.

Resources

Bouton, Katherine. Shouting Won’t Help: Why I – and 50 million Other Americans – Can’t Hear You. New York: Sarah Crichton Books, Farrar, Straus and Giroux, 2013.

Eberts, Shari, and Hannan, Gael. Hear and Beyond: Live Skillfully with Hearing Loss. Canada: Page Two, 2022. (Look for Hannan’s other books too. In addition to being informative, she is funny.)

Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. New York: Prentice-Hall, 1963. Reissued by Touchstone in 1986. Goffman’s conceptualizations and theories about stigma stand today.