Zoom Fatigue for People with Hearing Loss

Zoom fatigue is real, as an article in National Geographic lays out very clearly: “‘Zoom Fatigue’ may be with us for years. Here’s how we’ll cope.

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.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

Stigma: Why It’s So Hard to Talk About Hearing Loss

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.

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Everyone’s experience of hearing loss is different. I invite readers to share their experience with hearing loss in the Comments section.

Here’s a link to the WHO Report. If you click on the video at the bottom you can see my talk and those of others.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

What the ADA Means to Me

30 years ago this week, George H. W. Bush signed the Americans with Disabilities Act, which had been passed by a bipartisan Congress. Change for people with visible disabilities came quickly. Curb cuts became the norm, and allowed people in wheelchairs to cross the street. Wheelchair ramps aided not just wheelchair users but people with strollers or walkers. Braille became standard on public signage. Every governor and mayor had an ASL interpreter at his or her side when speaking in public.

Less easily or quickly addressed was the invisible disability of hearing loss. It is thanks to Rocky Stone, the founder of the Hearing Loss Association of America (then called SHHH), that hearing loss was included in the list of disabilities covered. One essential accommodation — in my opinion the most important for people with hearing loss — was the development of CART captioning. This photo shows one of my early experiences with it, speaking to a hearing-loss group.

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CART captioning.

On the 20th anniversary of the ADA, ten long years ago, I had recently quit my much loved job as an editor at The New York Times. I couldn’t hear well enough to manage the many meetings and phone calls and other requirements of the job. I could have asked to be transferred to a position which would not have required so much public and workplace interaction, but I was worn out from many years of trying to keep up. The obstacles seemed insurmountable. The technology was not very good.

Today, ten years later, the accommodations that would have made the workplace accessible to me exist, and I would have had the confidence and determination to ask for them and to use them.

I would have asked for CART captioning in all company-wide meetings. I would have asked for a conference room in our department to be looped, and for my department’s meetings to be held in that room. I would have asked for looping for the larger conference room, where Page One and other meetings were held. I would have asked for a captioned telephone. I would have used my own smart phone for calls, using the captioning app Innocaption+. I would have used speech to text captioning in smaller groups: Otter for the iPhone, Google Transcribe for an Android. I would have asked people – probably over and over and over again – to look at me when they speak, not to talk over each other, to repeat key phrases if I miss them or to paraphrase them.

Other benefits for people with hearing loss that stem from the passage of the ADA involve FCC requirements for cell phones and landlines to be compatible with hearing aids. Movies are captioned (usually via a device you ask for at the theater), television is captioned. The governor or mayor will include a CART captioner as well as the ASL interpreter for public events. Hearing loops allow people to hear in public spaces simply by changing the program on a hearing aid. This is really just a smidgen of the changes that have come about. Readers, please suggest others that have been meaningful to you.

In my term as president of the New York City chapter of HLAA, I was part of groups advocating for accommodations in the public and private spectrum. One of my proudest moments was the signing in 2016 of two bills by Mayor Bill De Blasio that advanced accommodations for people with disabilities. These in fact served people with hearing loss but also all New Yorkers, as many accommodations do. The first required all city agencies to have a disability-services facilitator on staff and to publicize the name of the person and contact information. The second required that meetings and other events must include information about accessibility on the announcement or invitation. (Prior to this bill, a person with hearing loss might go to an event that had been advertised as hearing accessible and find only an ASL interpreter.)

The picture shows some of the people who made those changes happen.

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Left to right, Katherine Bouton, HLAA member and advocate Ruth Bernstein, Co-sponsor of the bills City Council Member Helen Rosenthal, HLAA member and advocate Jerry Bergman, Mayor Bill De Blasio. (I can’t identify the  two men in the background.)

 

The following year the mayor signed a another bill, requiring installation of hearing loops in all new or renovated city buildings with a base cost of $1 million. And shortly after that, the historic landmarked City Council Chamber in City Hall was looped.

The fight for accommodations is in no way over, but it’s being waged. The pandemic has revealed the essential need for transparent masks in medical settings. Another of our chapter members, Toni Iacolucci, is working with New York City’s massive hospital system to make hearing accommodation available.

In 2016, at the New York Yankees’ annual Disability Awareness Night, our chapter received an award from the Mayor for our contributions to a more accessible New York.

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Left to right, Katherine with the citation, Toni Iacolucci, Deputy Commissioner for People with Disabilities Kleo King, Commissioner Victor Calise.

We have a long way to go in getting full accommodation for people with hearing loss. But the ADA gives us the legal means to continue our fight. Perhaps as important, the ADA has raised awareness of discrimination against people with disabilities and their rights for equal accommodation. Let’s hope by the 40th anniversary we won’t have to be working so hard to provide access to all people, no matter how severe their disability is, or how invisible it is. Thanks to HLAA for leading the way.

Communicating in the Age of Covid: An Unexpected Benefit

There aren’t many bright spots when it comes to Covid 19. The death toll is enormous, the financial impact is potentially catastrophic, the fear of what lies ahead can be overwhelming. Still, for many with hearing loss, this period offers an insight into what it’s like to have equal access to spoken communication.

Many of us “manage” our hearing loss as best we can, through hearing aids and cochlear implants, through assistive listening devices, through speech reading and attention to communication strategies. I have a cochlear implant and a hearing aid. As grateful as I am for their superior technology, they’re not enough for me to participate fully in the hearing world. I employ these various devices and strategies with somewhat limited success.

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Giving a reading in Seattle. Behind me you can see CART captions projected on a screen.

But in the age of Covid, the playing field has been leveled. It is often said that we hear with our brains. It’s equally true that we hear with our eyes.

As an advocate for people with hearing loss, I attend a lot of meetings. Most have to do with disability access and most offer live CART captions as well as accommodations for other disabilities. I’m able to keep up fairly well, although the effort of reading captions during an in-person meeting gets exhausting.

These days, however, all our meetings are virtual, and many of them are captioned. See below for instructions for getting captions.  With a Zoom meeting or Google Meet or any other captioned forum, an extra element is added that makes all the difference for me. These apps allow the speaker’s face to be isolated on the screen. (Click on the icon on the upper right of the app’s screen and then choose “Speaker View.”) That means that in addition to hearing the voice and reading the captions it’s very easy to read lips as well.

A good CART captioner makes the captions seem to synchronize with the spoken word. With my ears alone (plus hearing aid and cochlear implant) I miss a lot. With CART captions, the speaker’s voice actually sounds clearer and easier to understand. Am I hearing the words or am I reading them? I often can’t tell.

Add the visual element of the speaker facing you on the screen, and you’ve got triple input. Researchers call this multiple the McGurk effect, named after one of the British scientists who discovered in the 1970s that people comprehend speech better if they hear it in multiple ways. The scientists called it “hearing lips and seeing voices.” That’s why we need to see the speaker’s face clearly. A friend of mine likes to say, “Don’t speak till you see the whites of my eyes.” That is, she needs to see your lips in order to hear your voice. Adding captions to eyes and ears is an important third element. In a live gathering, adding hearing assistance in the form of a hearing loop is another way of improving the hearing experience through multiple inputs.

FaceTime also turns out to be an invaluable tool, although it doesn’t use captions. I always thought FaceTime was basically for fun, for talking to your grandkids or your boyfriend. But the McGurk effect applies here too. FaceTime isolates the speaker’s face close up.  This vastly enhances the ability to speech read. So, just as with good CART captioning, if I’m on a FaceTime call, I’m not sure if I’m hearing the speaker or reading lips. The input from eyes and ears are inextricably entwined.

In this time of social distancing, masks, self-quarantine, living apart from one another – we may feel isolated. I did at first, and I wrote about it in my column Coronavirus Concerns for People with Hearing Loss. It’s not just the disease. (As we learned more, I updated that column: I Take It All Back.)

But as I’ve become more comfortable with technology, everything’s changed. Eyes, ears and brain working in sync make me feel more connected than ever.

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To access Zoom captions: The person who initiates the meeting can either hire a CART operator to provide live captioning or can offer automatic voice recognition captions (which are generally less accurate). You, the guest at the meeting, click on “Closed Captions” on the very bottom of the Zoom screen. The captions will run just above that. You can adjust the caption size by clicking on CC and scrolling down. Sometimes “chat” interferes with the captions. If that’s happening, click on “chat” and the box with chat messages will appear on the right. You can move your whole screen to the right to get them out of sight. I know this sounds complicated but once you try it, it gets easier.

For more on the kinds of technology that are useful for people with hearing loss, especially now, the websites of both the Hearing Loss Association of America and the Center for Hearing and Communication offer good tutorials, including webinars.

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For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If they’re not there, ask for them.

Here’s a link to my most recent book: Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.