No question about it, masks have been a pain for people with hearing aids. The elastic ear piece gets tangled with the behind-the-ear hearing-aid component and sometimes pulls it off. Wearing a mask has been not only annoying but sometimes disastrous when coupled with hearing aids or cochlear implants. I lost a cochlear implant (found by a neighbor, thankfully).
But most of us wore them anyway, each figuring out our own imperfect solution. Take off the hearing aid? Anchor everything with a hat? Get new, completely in-the-ear hearing aids? Use a mask that goes behind the head rather than behind the ear?
My solution was to take off my c.i. when I wore a mask. The mask still got tangled with the hearing aid in my other ear, but it was easier to manage. Not wearing my cochlear implant definitely negatively impacted my hearing, and not wearing your cochlear implant is not a good idea. Nor is not wearing a mask until the CDC tells us it’s okay.
Last week I was at my audiologist’s office and I noticed she was wearing a headband with one large button on each side just behind the ear. Her mask looped over the buttons. She doesn’t wear hearing aids but her ears get tired wearing a mask all day, she told me, and the mask is much more comfortable with the headband, which goes over the ears.
The minute I got home I Googled “headband with buttons for mask” and up came dozens of choices. I ordered one headband to try it out. It was perfect. Soft, stretchy, tight enough to fit but not give me a headache. Then I ordered three more, in different colors and patterns.
I won’t name the brand because what works for me might not work for you. But Google “headband with buttons for mask” and take your pick. Or go to a store like Walmart.
I have no need for four headbands, but I love them. They’re fun. They’re also great for sports, and fit both men and women.
Pictured above are just some of the many choices. (Clearly I’m a bit late to this discovery.) Prices vary widely. Most expensive is not necessarily best.
But let me just say that the author of this article has no idea what Zoom fatigue is like for people with hearing loss. We don’t just endure those long sessions, we read them, one word at a time.
It reminds me of the Fred Astaire/Ginger Rogers quip: She did everything he did, but backwards and in high heels.
The image below is a screenshot of a webinar I attended this week. There was PowerPoint (the big box), the speaker (postage stamp, right), live captions (bottom three lines), and captions in context (called “full transcript,” box at the right). This is an example of good captioning — and it’s probably still making you feel just a bit dizzy.
Last week I was on a two-hour Zoom meeting with less than adequate captions. Bad captions, actually. The captions appeared — as these do — as three short lines at a time, at the bottom of a text-heavy powerpoint, but they were much shorter, and pretty meaningless. (I wish I’d taken a screenshot.) To provide context for those free-floating three lines, I clicked on “full transcript”. Full transcript was also three lines at a time, though it gave me five or six segments of three-line text. These three lines are not three sentences. They are arbitrary selections of a certain number of words that would appear on a screen. An arbitrary 10-15 words, whether or not they are complete sentences.
At the meeting last week, I supplemented the provided captions with my own IPhone caption app, Otter. (If you have an Android phone, you can do the same with Google Live Transcribe.) It was a little better, with enough text to provide context. But even Otter was not up to a speaker who spoke too fast, used too many unfamiliar technical terms and acronyms, and was not thinking about who was listening. This was a meeting for people with disabilities, so there was also an ASL interpreter on the screen.
Recently Zoom announced that it would provide free captioning if the originator of the meeting asked for it. This is thanks in part to Shari Eberts’ petition to get Zoom to provide captioning for people with hearing loss. Thank you again Shari. A host can also add Otter captions to a presentation.
Google Meet provides free captions, in a dedicated black box at the bottom of the screen. The captions appear in more or less full sentences. It’s a good ASR system. But Google Meet hosts only smaller meetings.
If a Zoom speaker uses PowerPoint, that adds to the burden for the attendee with hearing loss. The PowerPoint occupies most of the screen, the speaker is postage-stamp size and it’s hard to speech read. Often even after the formal presentation has concluded, the speaker leaves the PowerPoint up, on the screen. So there’s no relief for the hearing-compromised attendee.
Help! We need some new protocols for on-line presentations.
Here are some suggestions for speakers and hosts: Speak slowly and clearly. If you are using PowerPoint, make it text light, not text heavy. If you must repeat the words on the slides in your oral presentation, then make sure you say the same thing – otherwise our eyes are shifting back and forth between the slide and the captions. Provide key words and names to the CART captioner in advance of the meeting. Take down the Power Point when the formal presentation is over, so it’s no longer covering the majority of the screen. CART captioners should set their output directly to Zoom and (this is technical) not use the API third party token.
Despite these troubles, I love ZOOM. Even bad captions make meetings accessible to me that would otherwise not be. Any Zoom meeting is much easier to follow than an uncaptioned in-person meeting.
I want to thank Ann H. Logan for pointing out the National Geographic article in a post on her blog AbyCats’ Thoughts.
Several people have asked if I’ve seen “Sound of Metal,” a movie about hearing loss, which was released late last year. At first I avoided it. The trailer featured a metal drummer playing very loudly, and it didn’t look all that appealing. I finally did watch, with the sound turned way down and the captions on, and enjoyed it.
Riz Ahmed plays the drummer, Ruben, who experiences sudden deafness. The portrayal of the experience of hearing loss seemed very accurate to me. Too little comprehension, too much noise. Ruben’s emotional reaction to the loss – anger, depression, confusion – will also be familiar to many. Ruben is a recovering addict, which adds to the difficulty. Watching Ruben struggling to understand what is happening to him took me back to the days when I too experienced sudden hearing loss. Ruben’s sensitivity to loud noises reminded me of what felt like the physical assault of noise in New York City, where I lived. I was sensitive not just to loud sounds like a siren or jackhammer, but to less obvious ones, including the blast of a city bus braking or accelerating.
“Sound of Metal” is nominated for six academy awards this year, including Best Picture, Best Actor (Riz Ahmed) best supporting actor (Paul Raci), best original screenplay (Darius Marder, Abraham Marder, and Derek Cianfrance). Tellingly, it is also nominated for best sound. When you’re making a movie about hearing loss, sound is important.
The movie has generated controversy in the Deaf community. Neither Ahmed nor Raci is Deaf, although Raci is the son of Deaf parents. Ruben at first joins a Deaf community, where the group leader, played by Raci, welcomes him and helps him learn ASL. Riz Ahmed studied ASL for 7 months prior to filming. Some of the other actors, though not the principals, are Deaf.
The movie has also caused some consternation in the hearing loss community, in particular in its depiction of cochlear implants. The information is misleading and in some cases inaccurate. Ruben receives bilateral implants. We don’t hear any discussion of trying hearing aids first, in an effort to make the most of his residual hearing. In addition, bilateral implants are rarely done at the same time. Surgeons prefer to implant one ear, make sure the implant works for the recipient, and then go back later for the second implant.
We don’t see any of the evaluation process or any discussion that would ordinarily precede this surgery. A surgeon and audiologist would have talked about expectations, which shouldn’t be too high – and in fact Ruben’s first reaction to the metallic sound of the implant is distress. But he’s a quick learner. Some have also questioned this as well. As I can attest, learning to hear again with a cochlear implant takes hard work, if possible with a speech-language pathologist. But Ruben has been only recently deafened, and in real life he might quickly regain good speech discrimination. Ruben is also told that health insurance doesn’t cover implants, which range from $40 to $60,000. This is not accurate. Almost all health insurers will cover at least one implant, as will Medicare and in many states Medicaid.
Perhaps most alarming to me was the lack of any apparent reaction to the fact of his sudden deafness. Sudden deafness can be an indication of a serious medical condition and an ENT should immediately test for auditory nerve damage, auto-immune disease and other conditions. An MRI and a strong dose of oral steroids is also usually prescribed. His drumming would no doubt have contributed to hearing loss, but unless he was exposed to an explosion or other loud sound, the loss would have been gradual.
I liked the movie, and am sorry for the misrepresentations, though the depiction of the impact of hearing loss is valuable, and I’m not sure I’ve seen it so accurately portrayed elsewhere. So many people get their information from movies like this one, and it’s good to show the reality of hearing loss. It’s also a bit of a shame to have cochlear implants inaccurately portrayed.
I sometimes forget how surprised and dismayed people are by the loss of their hearing, how much of a hidden disability it remains. I was reminded of this when I attended a virtual meeting this week of the New York City Chapter of The Hearing Loss Association of America. The speaker was Michael A. Harvey, a clinical psychologist whose books include Listen with the Heart: Relationships and Hearing Loss and The Odyssey of Hearing Loss: Tales of Triumph. Dr. Harvey’s talk clearly resonated with a lot of people, and during the question and answer session I saw how many in the audience were struggling as I had back in 2009, when my hearing loss derailed me.
The response from the hearing community was gratifying. There was a lot of curiosity about the hearing-loss experience. I did many interviews and the book got good mainstream-media reviews. The response from the hearing-loss community was also gratifying but in a profoundly different way. People reacted to my book emotionally. My experience was theirs. We shared the confusion, anger, distress and depression of learning to live with hearing loss.
When I was writing Shouting Won’t Help, I interviewed dozens of people across the country with hearing loss, I talked to doctors and researchers about the causes and treatments for hearing loss, and to psychologists and psychiatrists about the emotional effects of hearing loss. Their stories — and their wisdom — complemented my own story.
The two most important things I learned were 1) Most people with hearing loss feel isolated and alone. And 2) Most people who know people with hearing loss have no idea what they are going through.
In recent years, I’ve lost sight of that basic response to hearing loss and I realize I need to go back to some of those essential issues, to help others with hearing loss understand that their experiences are normal and shared by many. And to offer suggestions for living with hearing loss — practical suggestions from how to explain your hearing loss to someone, to the many apps and devices that help minimize the affect of hearing loss, to asking for and getting accommodations in public places.
Hearing loss affects 50 million Americans of all ages. It’s not just for the old. Sixty percent of men with hearing loss first lost their hearing between the ages of 19 and 44, according to the National Institute for Deafness and Other Communication Disorders, the NIDCD. For women the peak age of onset is between 40 and 59. Even teenagers are affected at an alarming rate. One in five teenagers has some degree of hearing loss.
I began to lose my hearing at age 30, from unknown causes. Today I have a cochlear implant in one ear and a hearing aid in the other. I went through difficult times, and in fact my day still involves overcoming one hearing obstacle after another. But I’m no longer devastated by my loss, and most of the time I’m no longer angry. I live with hearing loss every minute of every day. But I’m no longer “hearing impaired.” It no longer defines me. Now I’m a person with hearing loss. A person first, who happens to have hearing loss.
I welcome comments and suggestions for topics readers would like to see addressed.
Her post is about Jay Alan Zimmerman’s new way of measuring hearing. He calls it the Hearing Visualizer. Jay’s idea is brilliant, simple, and emphasizes the positive. It focuses on what you CAN hear. Not on what you CAN’T.
If you’d like to watch Jay’s captioned presentation (it’s short and very entertaining, as well as informative. … Click on the video and then click on “Watch This Video on YouTube.”
Last July I wrote about the 30th anniversary of the Americans with Disabilities Act, signed into law by President George Bush in July 1990. I wrote about how dramatically it changed life for people with disabilities, and how fortunate I felt to be a beneficiary of this act. My post was called What the ADA Means to Me.
Now a stunning documentary, Crip Camp: A Disability Revolution, charts the origins of the disability-rights movement, which culminated (but did not end) with the signing of the ADA.
The story begins in 1971 at Camp Jened, a summer camp in the Catskills for teenagers with disabilities. Many of them had severe disabilities, but the loose, free spirit of Camp Jened allowed them to act like teenagers – dancing, smoking pot, making out. Their exuberance is contagious. It also gave them a chance to discuss the experience of disability in its many forms.
The opening scene of the movie is a home video of a toddler, James LeBrecht, born with spina bifida, literally catapulting himself around his parents’ home, throwing himself up stairs, metaphorically swinging from the chandeliers. We next see him in 1971 at Camp Jened, wheeling himself with the same jubilance he had as a toddler. LeBrecht, who directed, produced, wrote and is a central character in the documentary, is just one of the activists who got their start at Camp Jened and went on to change the world.
Judith Heumann lost the use of her legs to polio when she was two. Even at camp, she was clearly a leader. She would later become a noted disability-rights activist and was named Special Advisor for International Disability Rights by President Obama. (Barack and Michelle Obama are executive producers of “Crip Camp.”) Denise Sherer Jacobson, born with cerebral palsy, met her future husband, Neil Jacobson, who also had cerebral palsy, at Camp Jened. “Why do you have to marry a handicapped girl?” his parents asked when he told them he and Denise were getting married. “Why can’t you find a polio?” Heumann and the Jacobsons, as well as James LeBrecht, the force behind this film, are just a few of those whose independence and spirit were fostered by Camp Jened.
In 1977, Judith Heumann led a groundbreaking protest in San Francisco, called the Section 504 sit-in. Disability activists occupied a federal building for almost a month, demanding greater accessibility for all. Their victory was euphoric, but very soon they realized it wasn’t enough.
“I’m tired of being thankful for accessible toilets,” Heumann says. “If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”
Two years after the Section 504 sit-in, Judith Neumann led people with disabilities from all over the country to Washington D.C. to stage a protest at the Capitol. The footage of demonstrators pulling themselves up the Capitol steps, because there were no wheelchair ramps, made me gasp.
In a 2016 Ted talk, Heumann told some of the stories behind the protest, including her own. As a child who lost the use of her legs to polio, she was told by a school official that she could not go to school because she was a “fire hazard.” Don’t worry, the principal said, we’ll send someone to your home, which they did, for a total of two and a half hours a week. Judy was eventually allowed to go to school, but when she got to high school, not one New York City high school was accessible. Her friends carried her up the steps. After she got a degree in teaching, she easily passed the written and oral tests to apply for her teaching license. But then came the physical test. “How do you go to the bathroom?” an interviewer asked her.
In her Ted talk, Heumann reminds us that, 40 years on, there’s still work left to do. Denise and and Neil Jacobson are still married and still activists, whizzing around Oakland in their mobilized wheelchairs, Denise’s graying hair highlighted with purple. What an extraordinary group of people. The movie is nominated for an Academy Award for Best Documentary Feature. It’s now available on Netflix.
The fight for equality is not over. Last week, Edith Prentiss, a longtime advocate for people with disabilities, died in New York at age 69. A fierce activist, Edith seemed to be everywhere in her motorized wheelchair, making her voice heard – making all our voices heard. In the words of Victor Calise, New York City’s Commissioner for People with Disabilities, she was an advocate “for everyone and anyone, understanding that the disability rights movement was not just for people who use wheelchairs but for every person with every type of disability.”
On the one-year anniversary of the World Health Organization’s declaration of Covid as a pandemic, we are beginning to see the light ahead. Vaccine numbers are soaring, restaurants are offering indoor dining, people are traveling. Pandemic “pods” are expanding to include more than the two or three friends or family that many have depended on for company. Soon enough, there will be weddings, awards ceremonies, even private parties. Are you ready?
I’m not. But I’m working on it.
Re-entry anxiety is not just for people with hearing loss. There are dozens of Google entries discussing the phenomenon, some of them a little premature, like one back in August in Psychology Today, which suggested starting small and working with a re-entry buddy to help build confidence. Emma Warnock-Parkes, a clinical psychologist and researcher on social anxiety disorder at Oxford University, says this anxiety is perfectly normal: Quoted this week in the Guardian, she said, “We’ve all been social deprived this last year, and when you haven’t done something for a while, it can be a bit strange going back into it.” Don’t avoid social situations, though, she advises: “Avoidance incubates anxiety.”
But my social anxiety– and yours too probably, if you’re reading this – is compounded by my hearing loss. Even one-on-one conversation in a relatively quiet space can be difficult, especially if people continue to wear masks. For most of us, conversation of any sort in a group or social setting is a challenge, and an even larger one when we can’t read lips.
So what can we do to prepare?
I like the idea of a re-entry buddy. Take your first steps with someone you trust. That could be another person with hearing loss, or it could be a hearing person. But whoever the buddy is, and however well they hear, focus on your own ability to communicate. Don’t let them do it for you. They’re just there for moral support.
Use your assistive devices. If you have a Roger Pen or one of the excellent clip-on or mini-mics made by other manufacturers, don’t be shy about using it. If we are all still wearing masks though, the assistive device may amplify sound but not clarity. Masks muffle sound even when amplified by a mini-mic. See-through masks help with speechreading but also muffle sound.
Use a captioning app. Otter.ai and Google Live Transcribe are both free to people with hearing loss and easy to use. They’re also accurate. Show it to the person you’re talking to and briefly explain. Usually, “I don’t hear very well and this captioning app helps me follow conversation,” is enough. I find that hearing people are often fascinated by the app and want to get it themselves for recording conversations. Readers, if you use other captioning apps, please let me know about them in the comments section.
Start small, preferably with people who also have hearing loss. Practicing with people who know exactly what you’re going through may give you confidence to try out communication with a group of hearing people.
If you’ve been comfortable in your pandemic cocoon, re-entry may be hard. But it’s important. Isolation can lead to depression, and both contribute to cognitive decline. Those of us with hearing loss are already at higher risk of early onset and more severe cognitive decline. It’s important that we take the steps available to us – like being part of a close social network – to offset this risk.
If you’re concerned about re-entry, please share your thoughts. If you have ideas about how to make it easier, please share them too.
This week the World Health Organization asked me to speak at the launch of their global Report on Hearing. The audience, from all over the world via Zoom, were primarily hearing professionals and public health experts whose work is about hearing loss but who don’t have it themselves. I was asked to speak about my hearing-loss experience.
I described myself as a deaf person who lives in a hearing world. I was well into adulthood when I lost my hearing, and it happened overnight. I was 30 and healthy, with no family history of hearing loss. One morning I woke up profoundly deaf in my left ear. I went to a doctor, who did many tests and found no explanation for the loss. I still had one ear that worked, however, so I ignored the loss. I didn’t get hearing aids. I never learned Sign language
Over the next 20 years the loss became bilateral and more severe. I had to acknowledge it – to myself anyway. Telling others would come later. I finally got hearing aids when I was 52, 22 years after that first diagnosis. They worked well enough for a while. And when they no longer helped, after 10 years, I got a cochlear implant in my now nearly dead left ear. A stronger hearing aid helped in the better ear.
Why did it take me so long to get hearing aids? Why did it take me even longer to acknowledge the loss and ask for accommodations that would have helped me? I’m not alone in this delay. It takes people an average of 7 years from the time of diagnosis to treatment.
The answer is stigma. Stigma ranges from deep-seated fear and misunderstanding of deafness in some societies to an association of hearing loss with aging, and with cognitive decline and dementia.
The stigma of hearing loss has a long history, dating back to pre-Christian Hebrew law, which prohibited the deaf from participating in the rituals of the temple. Aristotle declared the deaf “incapable of reason,” and thus ineligible for citizenship. Jesus cast out the “deaf and dumb” spirit that possessed a child, and until quite recently some fundamentalist Christians cited that passage associating deafness with possession by the devil. Superstitions are still powerful in many societies.
The stigma of hearing loss is pervasive and hugely damaging.
Hearing loss is universally dismissed as a condition of aging. Millions of people simply retreat into isolation rather than take steps that would allow them to continue to be active members of society. That isolation leads to depression, depression contributes to dementia. A life lost because of the stigma of seeming old and useless.
Acknowledging hearing loss is not easy. Coming to terms with deafness can take a long time. Hearing-health professionals need to understand that, and to help their patients understand. Professionals and patients also need to understand that although hearing aids work well for many, they are not enough for people with severe loss. We need additional devices and accommodations. Cochlear implants are miracles, but they are not a magic bullet. It takes dedicated hard work to learn to hear again with a cochlear implant.
Despite my hearing aid and my cochlear implant, the best technologies available, I still couldn’t hear. I lost my job, a job I loved. I could no longer function professionally.
But stigma was at work here too. My employer would have found another job for me, one that didn’t require hearing well, and would have provided accommodations like a captioned phone. I was too proud to acknowledge my loss, too ashamed to accept a job that would have been an acknowledgment of my disability. So I quit. I walked out. And that’s when grief hit me.
Grief is a totally appropriate response to losing your hearing. I grieved not just the loss of one of my senses, but the loss of my work, the loss of my self, the loss of my identity. I retreated into isolation and depression, combined with anger and continuing denial.
But I was lucky. I found a support group, almost by chance, the Hearing Loss Association of America, #HLAA.
I made friends through HLAA with people who had gone through what I had. We shared stories and strategies. We supported each other. We found a safe space together for our hearing loss.
I went on to write a book about my experience and to become an advocate for people with hearing loss. I found new friends, a new profession, a new life. I defied the stigma, and now I try to help others to do the same.
Hearing loss is preventable and it is treatable. That’s what the WHO report is saying.
Once we begin to treat it — with hearings aids, yes, for those with severe loss, but for the far more numerous cases of mild to moderate loss, with direct-to-consumer hearing devices – once we treat it, stigma will begin to fade away.
Everyone wears things in their ears these days. Apple sold 60 million Airpods in 2019. Airpods Pro include many of the same features as hearing aids and cost a fraction of hearing aids. Other less expensive hearing devices look like fancy bluetooth mics or expensive earbuds. Once enough people are wearing them, young people as well as old, stigma disappears.
It won’t be easy. But acknowledging the toll hearing loss takes on individuals and societies is a good start. Then we need to invest in prevention, education, and better technology.
We need to make hearing loss a thing of the past.
Everyone’s experience of hearing loss is different. I invite readers to share their experience with hearing loss in the Comments section.
Today, March 3, is World Hearing Day. And today the World Health Organization released its first ever Report on World Hearing.
Awareness of hearing loss as a global problem has been slow in coming. That this is the first report on hearing loss from the prestigious WHO is evidence of that. One explanation for the delay is the invisibility of hearing loss – the vast number of people who hide it. And one explanation for the invisibility is the stigma of hearing loss.
And a powerful stigma it is. WHO predicts that if current trends go unchecked by 2050 (a date that used to seem so long ago and now seems perilously on the horizon) one in four people worldwide will have hearing loss.
That’s an alarming number, but perhaps even more alarming is that 430 million people right now have disabling hearing loss. “Disabling” — as I wrote in my previous post, quoting the language of the Americans with Disabilities Act — means that an impairment “substantially limits one or more major life activities.” Not all hearing loss is disabling. Disabling hearing loss does not include the signing Deaf, who have a perfectly good language, and are not disabled as long as society doesn’t throw obstacles in their way. “Accessibility alleviates disability,” as I wrote in a presentation recently. (I’m not sure I coined that phrase, but it’s a good one so I use it.)
But the vast majority of those with hearing loss are not sign-language users, and in many of them, including me, the loss is a disability.
The report notes that 60 percent of hearing loss can be prevented. In children, prevention includes immunization, especially against rubella and meningitis, and better maternal and neonatal care. In adulthood, it means limiting exposure to noise and ototoxins. There are other causes of course, including heredity, which can be exacerbated by these.
Universal vaccination and screening, better maternal and prenatal health care – these things are expensive, right? In the short run, yes. But in the long run it is money well invested. The report calculates that governments can expect a return of nearly $16 (US) for every $1 invested.
WHO invited me to speak at their launch ceremony this morning. It was a wonderful event (except that it was held at 5 am EST). Sandile Majola and the Ndlovu Youth Choir of South Africa kicked it off – and woke me up — with a rousing performance sung and signed in a sunny outdoor setting. I was asked to talk about my own loss and what role stigma played in how I dealt with the loss.
As I wrote my talk, I realized that stigma has affected me in ways I’d not realized before. I’ll post a version of that talk separately. World Hearing Day celebrates hearing, but it also is an opportunity to remind ourselves that hearing is easy to lose and hard to get back. As individuals and as countries, we need to protect this precious resource.