Healthy Hearing

It’s Summertime and the Livin’ is Noisy

Katherine Bouton Healthy Hearing

It’s July 4th weekend and for many of us it marks our return to at least some degree of socializing. Picnics are good. But beware fireworks, marching bands, ceremonial cannon shots. These are all part of celebrating our nation’s birthday. They are also all hazardous to your hearing health.

Fireworks can easily be 150 decibels.

That may be even more true this year. Living in relative isolation, with quick trips to the supermarket, most of us haven’t been exposed to anywhere near the amount and intensity of noise that we encountered in everyday life pre-Covid. I wonder if this respite from noise now makes us more susceptible to noise damage.

Here are a few reminders of how you can protect your hearing.

Fireworks. Don’t stay home from celebrations, but do buy yourself a good pair of earplugs. You’ll still hear the boom, and earplugs won’t diminish the visual spectacle. A website called The Best Earbuds offers advice accumulated from readers and personal experience. This article from Healthy Hearing explains why fireworks are so loud, and also offers a guide to commonly encountered noise.

Yard cleanup. Don’t use that chainsaw to cut dead limbs without a good pair of noise-canceling headphones. I don’t mean those fancy Bose headphones that people wear on airplanes (which cost around $300). Headphones specifically made for yard work are much less expensive and better protection. A chainsaw registers at about 118 decibels. The Occupational Safety and Health Administration requires ear protection in the workplace at that decibel level for any duration of time.

Auto racing. You may be a diehard NASCAR fan, but auto racing is about the same noise level as a jackhammer — that is, LOUD. 130 dBs. The drivers and crew wear headphones. So should you.

Summer workouts. You want to get rid of the Covid 15. The weather finally cooperates. But if you’re motivating yourself with music coming in to your ears through earbuds, check the decibel level. You don’t want to improve your cardiovascular health at the expense of your hearing. Some experts recommend keeping the volume at 80 percent or below..

Outdoor concerts. What could the problem be? You’re in the great outdoors. But don’t forget that music (and sports) venues are designed to retain the sound. In fact, if the noise spills over into neighboring areas, the venue may have to be redesigned. There’s a reason so many musicians and fans have hearing loss and tinnitus.  Wear noise-canceling earbuds or headphones.

It’s summertime, and the livin’ is noisy. Hold on to your hearing so you can keep on enjoying it year after year. My iPhone has a decibel meter and I imagine other smart phones do as well. Check to see what you’re being exposed to. And if it’s too loud for too long, put on your noise-cancelling earbuds or headphones.

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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.

The Best Hearing Aids of 2021

Katherine Bouton #BestHearingAids, Healthy Hearing, Hearing Aids

Forbes Health has just published an excellent guide to hearing aids. Best Hearing Aids from Audiologists 2021.

Forbes assembled a panel of three audiologists to come up with a list of best hearing aids in a variety of categories, including best hearing aid overall, best hearing aid for low budgets, best for tinnitus, best for outdoor enthusiasts, and more.

Drop-down text boxes under each device provide further information. The listings are followed by some sensible advice about how to buy a hearing aid.

This seems like a very helpful guide for those considering hearing aids for the first time as well as for those who already have them but need new ones. It’s important to remember, however, that this is just a guide. It’s not a shopping list. Even though a hearing aid is ranked “best,” it may not be right for your hearing. Another hearing aid style or brand may work better. Cost is also a factor. The most expensive is not always the best.

The three audiologists are:

  • Abram Bailey, a doctor of audiology, Forbes Health Advisory Board Member and founder of HearingTracker.com
  • John Coverstone, a doctor of audiology in New Brighton, Minnesota, and host of the AudiologyTalk podcast
  • Lee Weissman, a doctor of audiology and master of science in biomedical engineering with Hear So Good in Novato, California

The package was edited by Kim Acosta, the lead editor at Forbes Health.

Another recent “best hearing aids” list was published by Explore Health, in 2020. Healthline.com also published a list in 2021. It’s interesting to compare recommendations.

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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.

Rain Delay

Katherine Bouton Healthy Hearing

Here on the East Coast, Memorial Day weekend was rained out. Not only rained out but chilled out. I am currently in western Massachusetts, where the temperature hovered at 45 or lower and the rain was incessant. I worried about my newly planted vegetables. Frozen eggplant?

But it was also kind of a relief. The governors of both New York State and Massachusetts had just announced that the shutdown was over. We could see friends and family, go to parties, barbecues, pools, the beach.

Apologies in advance to the person sitting on my left. There’s no way I”ll hear you. Maybe I’ll catch a few words from the person on the right. The green centerpiece will make hearing across the table impossible.

I’m vaccinated, doubly. I feel safe in a small group of friends. But do I feel comfortable?

No. As I wrote a few weeks ago (The Return of Social Anxiety), the end of the shutdown means a return to in-person life, in the real world. I’d been invited to a few small Memorial Day weekend gatherings, and I was looking forward to them. But I was also deeply relieved when they were canceled because of the weather.

The previous weekend, during a heat wave, I went to a birthday celebration for an old friend. There were nine of us around an outdoor table. The house was beautiful, the hosts were gracious, the food was delicious, and I was glad to be there to celebrate my friend’s birthday.

But I couldn’t hear. I was open about it. I used the captioning app Otter.ai. (If I had had an Android phone, I’d have used Google Live Transcribe.) I practiced mindful listening (see Learn How to Listen). I corralled a friend to be my interpreter. Thank you D. But I left feeling a little sad.

These were good friends, kind, helpful friends who did their best for me. I was younger than most of them but also deafer than all.

What a conundrum. I want to be invited. I want to see old friends and meet new friends and eat nice food and feel part of life. But it’s so hard.

I am privileged. I only have hearing loss. I can see (with glasses), I can walk (if sometimes unsteadily). I can taste (though spicy food makes my mouth hurt and dairy products make me sick). I have my garden, my friends, my children, my dog. I lost my husband last year, but we had time to prepare, and for me to move forward.

The only thing I lack – and have not come to terms with — is my hearing.

Thanks to technology, I even have way more of that – my hearing – than I would have just a generation ago. I’m not an old lady sitting in the corner with an ear trumpet. I’m still me. I’m still here.

But as I think of my new life, emerging from the Covid cocoon, I know I need to strategize about this reentry. Figure out what’s worth it and what’s not, and how to make the best of it.

Seeing my friends is worth it, even if I have to follow up with them individually the next day to ask what it was we were talking about.

Seeing my family is worth it, even if I have to constantly interrupt and say “What?” — or, my preference, “What are we talking about?” If I miss a name, I’ll interrupt and say, “Who?” and then if I still don’t get it, “Spell it for me.”

What’s not worth it? For me, going to a restaurant is not worth it. I can never follow conversations and I also have to monitor the food to make sure it doesn’t include dairy.

Going to the movies is not worth it. Juggling the cup-holder caption device, or wearing the glasses on top of my own glasses, returning the device if it’s incorrectly programmed. I’ll watch at home, thank you, with captions.

Parties. It’s fun to dress up, so I might go. But I won’t stay long because it isn’t fun to spend an evening befuddled.

Public meetings. Yes, if there is CART captioning. No, if there isn’t.

Religious services. Maybe, if there’s CART. No if there isn’t. But even if there is CART I still won’t hear the music properly.

Weddings and funerals. Yes, but. Under some circumstances I might ask for CART. Under others – the wedding is being held in an area where there aren’t CART providers – I’d go anyway. I might use my iPhone captions, but most people regard pulling out your smart phone at a wedding or funeral to be outrageously rude. It’s hard to explain what you’re doing, especially to people sitting some distance from you.

Graduations. Yes. Most schools and universities are way ahead in terms of providing access. Contact the institution’s disability coordinator.

Live sports events. Yes. Hearing doesn’t really matter.

There’s my list of wills and won’ts. I’m interested in readers’ thoughts. Please comment!

My fellow blogger Shari Eberts just posted on essentially the same topic. I guess it’s on a lot of our minds. Hers is How Will a Post-Pandemic World Look to People with Hearing Loss.

The New Bose Hearing Aid

Katherine Bouton Healthy Hearing

This week a new hearing aid goes on the market that costs a fraction of most hearing aids, has FDA approval, and can be bought directly by the consumer without seeing an audiologist. Moreover, it comes from Bose, which has a stellar reputation in the field of sound technology.

Three and a half years ago Bose announced that the FDA had approved a hearing aid that consumers would fit and program themselves, using an app on their smart phone. But no new product appeared, and some wondered if they’d given up.

Last week, surprising many, Bose announced that its SoundControl hearing aid would be available starting on Tuesday May 18th at a cost of $849 per pair. The hearing aids are intended for people with mild to moderate hearing loss. There’s a 90 day trial period. For now they are available only in five states: Massachusetts, Montana, North Carolina, South Carolina, and Texas, but distribution will cover all the states within a year. The aids have a behind-the-ear component and a dome in the ear, and look like a standard hearing aid. For photographs and a more detailed discussion, read Karl Strom’s article in Hearing Review. The image below is from Hearing Review.

The consumer uses the Bose Hear App on a smart phone to personalize the sound levels. The Bose Hear App has just two controls: World Volume (how loud you need it to be to hear in your environment) and Treble & Bass, which allows you to refine the sound according to your needs. The app also allows you to change the direction of the microphones, from Everywhere to Front, which is helpful in noise. You can also change the Left/Right Ear balance.

The aids use standard 312 hearing-aid batteries, with a battery life of up to four days depending on how and how often the hearing aid is used. (If you are already a hearing-aid user, you know that some batteries seem to have a lifespan of about 10 minutes, but that’s the battery’s fault, not the device’s.) Many people prefer rechargeable batteries.

This hearing aid is not for me or for most readers of my blog, who tend to have more severe loss. But they may be for those who could benefit from a hearing aid but are deterred by cost ($2400 per aid, on average). You can go on the Bose product page and take a hearing test to see if the Bose aid is right for you. Consumers can also try out the hearing aid virtually, wearing headphones, and see how the fitting works.

Since the product is not yet available, there are no user reviews, but I’d love to hear from anyone who tries them out. Just add a comment to this post. A study done by Bose with Northwestern comparing the Bose to prescription hearing aids found that users were happier with Bose’s sound quality than they were with prescription aids.

The Northwestern study also found no difference in hearing-in-noise performance and customer satisfaction in those using prescription-fitted hearing aids and the Bose. Abram Bailey of Hearing Tracker noted that the product used in the study had closed earbud-like tips. The marketed product has tips more like a standard dome that fits loosely in the ear. Bailey wrote that open tips provide less bass, and a “fundamentally different sound quality.” He would like to see Bose replicate its findings using the patented SoundControl product.

Standard hearing aids offer many features that the Bose does not. These include Bluetooth compatibility. You program the hearing aids using Bluetooth (and the Bose app) but you can’t listen to phone calls or stream music or podcasts the way you can with Made-for-iPhone or Made -for-Android aids. Hearing Review suggested that this decision may have been made to provide for longer battery usage. They also have no telecoil, which means you can’t take advantage of hearing loops and other assistive listening devices without an additional streamer.

The Bose SoundControl is not an over-the-counter hearing aid. The FDA approved it under its DeNovo review pathway, for devices for which nothing like it has previously been marketed. OTC Hearing Aids have been delayed again and again, and are not on the 2021 spring regulatory agenda, which covers reviews scheduled through October. “If the FDA doesn’t address OTC hearing aids during the current session, wrote Abram Bailey, the timeline would be pushed back to mid-2022 at the earliest.(The original review period was supposed to conclude in August 2020.) See below for a more detailed analysis of how the FDA schedule might work.

I’m all in favor of hearing aids being as widely used as possible. Bose’s new hearing aid may be a combination of the right price with the right technology at the right time. Over the years, as the Bose consumer ages and experiences more severe loss, this hearing aid may turn out to have been a gateway device. But the earlier you treat, the better. If the Bose introduces hearing aids to people who then go on to need (and buy) standard hearing aids, that’s good for everyone.

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Footnote on FDA and OTC hearing aids, from Hearing Tracker:

“If the FDA doesn’t address OTC hearing aids during the current session, the timeline would be pushed back to mid-2022 at the earliest. Once the rulemaking meeting occurs, a ~60 day public comment period begins, after which FDA has up to 180 days to issue the final regulations. Conservatively, there is an ~8 month delay from rulemaking meeting to regulation issuance, so if FDA addresses OTC in the Fall 2021 session, we could expect to see new regulations anywhere from June 2022 to February 2023.”

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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.

The Mask Problem: Solved

Katherine Bouton Healthy Hearing

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.

Genius!

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.

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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.

Zoom Fatigue for People with Hearing Loss

Katherine Bouton Captions for hearing loss, CART captioning, Healthy Hearing, Zoom

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.

Back to Basics

Katherine Bouton Healthy Hearing ,

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.

My first blog post was published on February 11, 2013, on the Psychology Today website. I called the blog What I Hear, and it was intended both for people who had hearing loss and for those who didn’t. I didn’t realize how great the need for information was until I published my book “Shouting Won’t Help: Why I – and 50 Million Other Americans – Can’t Hear You.”

This was one of my very first readings, and possibly the first time I ever saw CART captioning.

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.

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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.

Seeing Hearing Loss

Katherine Bouton Healthy Hearing ,

This week I’m going to refer you to a post by my friend and colleague Shari Eberts:

A New Take on the Audiogram Designed by Someone with Hearing Loss.

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.”

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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.

“Crip Camp”: When Disability Rights Became Civil Rights

Katherine Bouton Americans with Disabilities Act (ADA), Healthy Hearing

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.”

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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.