For My Summer Vacation, I Went to Hearing Camp

Who says only kids get to go to summer camp? Last week I went to hearing camp. We didn’t sleep in bunks, but we did have sing-alongs, games and picnic lunches. And we spent a lot of time talking and, more importantly, listening.
 Hearing camp was a four-day program at the University of Connecticut at Storrs, sponsored jointly by the university’s Aural Rehabilitation Laboratory and photo-HRFthe Hearing Rehabilitation Foundation, run by Geoff Plant in Somerville, Mass.

Most people may know UConn because of its championship women’s basketball team, but the school also has a well-known Department of Speech, Language, and Hearing Sciences, of which the lab is a part. Four of the lab’s graduate students, who are earning dual degrees in audiology, led the one-on-one aural rehabilitation exercises — 90 minutes in the morning and afternoon daily. The warm-up for the morning sessions was rollicking sing-alongs, led by Plant. Even for an aging cynic like myself, it was fun. And combined with plenty of coffee, it did get the brain working.

Aural rehabilitation, in the broadest sense, teaches you to listen better. It is often used for people getting cochlear implants and sometimes for those getting hearing aids for the first time. It can take many forms, from computer programs to group sessions to individual sessions with an audiologist or speech-language therapist. The American Speech-Language-Hearing Association (ASHA) has a good description of auditory rehabilitation.

For this camp, four people with severe hearing loss (three of us with cochlear implants, one with two hearing aids) worked with the four audiologists. Each camper and each audiologist had at least two sessions together.

The technique that was used is called KTH speech tracking, a program originally developed by Swedish researchers. The version we used was designed by a team at Gallaudet University, a Washington, D.C., institute of higher learning for deaf and hard-of-hearing students.

Here’s how speech tracking works: In alternating five- and 10-minute sessions, the audiologist reads from a prepared script, stopping at the end of each line whether or not it’s the end of a sentence or even makes sense. The client repeats what has been read. The audiologist’s computer keeps track of how fast the client is responding. This is done with the speaker’s face visible, and with it covered. Not surprisingly, most everyone does better when the speaker’s face is visible. The exercises are designed to enhance the speed and agility of the brain to hear sound and repeat exactly what was read.

Program director Plant wrote the text we listened to — a supernatural suspense story about a boy and his mother from Australia. You might not want to sit down and read it, but it was effective for this kind of training.

If you’re new to hearing aids or a cochlear implant, auditory rehabilitation helps your brain adjust, which ultimately helps you hear better. The result is improved, faster, more accurate word recognition. If auditory rehab isn’t offered in your area, there are lots of ways to create your own version.

The easiest is to have a companion read to you from a book, stopping at the end of a line and having you repeat the words back. You can also listen to a recorded book, pausing it every few minutes to look at the written text to see how much you understood.

There are also several computer programs available online. The best-known of these is the L.A.C.E. program, which uses increasingly difficult exercises, usually with an increase in background noise. Background noise is the one thing, more than any other, that stymies people with hearing loss. There is also a fun computer game called Read My Quipsthat is designed to challenge you to understand speech amid noise.

So how did I do? I don’t know yet. The audiologists will enter the KTH results in a computer, along with the results from a speech-in-noise test (QuickSIN) conducted at the beginning and end of camp to measure my improvement. I am hearing better anyway, because I recently got a new hearing aid, but hearing camp gave me an excellent chance to try it out. I look forward to getting my results.

But I’m not finished yet — and I never will be. As Plant says, auditory rehab is an ongoing process. He likens it to going to the gym to stay fit. If you stop, it doesn’t take long for things to go back to the way they were.

 

Photo Courtesy of the Hearing Rehabilitation Foundation

This post first appeared on AARP Health on August 25, 2016

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

The Hazards of Driving While Deaf

The death last week of 29 year-old-Daniel Harris, who was Deaf,  is a reminder for all of us who are Deaf and Hard of Hearing that we need to be extra cautious when pulled over by a police officer. Here’s a link to the New York Times article, which also includes heart-breaking photos of this very young man.image3-1

The risk is even greater if you’re black, as the Pearl Pearson case in 2014 showed. Pearl Pearson—a grandfather (with both a son and son-in-law in law enforcement), who was Deaf and black—was pulled over by a highway patrolman. When he failed to respond properly, the patrolman handcuffed him and put him in the police car. The incident was videotaped, and he was treated roughly enough to require medical attention

What should you do if you’re pulled over? This can be difficult and even dangerous for someone with hearing loss. Even if you tell the cop you have hearing loss he’s still going to expect you to answer his questions. Remember, you don’t <I>look<I> deaf. “Lady, do you know how fast you were going?” The correct answer is not to reach over to the glove compartment for your registration.

This situation is even more difficult at night, when the headlights from the police car behind you may blind you. What if the officer doesn’t even get out of the car but blares through his loudspeaker “Get out of the car!” Or was that “Don’t get out of the car!” That kind of misunderstanding can get you killed, or at least roughed up. This is even more of a possibility if you also happen to be young, male, or black. Add hearing loss and the situation is even more likely to escalate. (Harris was white.)

The Pearl Pearson case got a great deal of attention among the Deaf and HOH community, and a fund-raiser was held to help with medical and legal expenses. The local law enforcement community also paid attention. Pearson had a note on his car visor saying he was Deaf, but unfortunately he didn’t get a chance to show it before he was handcuffed and bundled into the police car. That visor message is something that all of us with hearing loss should have. You can download a copy and print it out from Google images.

Neil Baumann offers a visor card you can order for $4.95 that is laminated. His 2005 column on visor cards relates some alarming instances of people with hearing loss being pulled over and having their hearing loss misunderstood. Get yourself a visor card.

Then what? If you’re pulled over, the first thing you should do is unclip the visor message and place it on your steering wheel. Tell the officer that you are Deaf or hard of hearing and point to the visor message. Watch the officer closely as he gives you instructions. If you don’t understand the officer’s words, repeat “I am deaf (or hard of hearing). I did not understand what you just said because I couldn’t hear you. Would you please write down what you just said?’

Make sure the visor message is on the visor, not somewhere in your purse or the glove compartment where you’re going to have to shuffle around looking for it. The ACLU and the actress Marlee Matlin teamed up to produce a video on how to handle a traffic stop if you are deaf or hard of hearing. It has useful advice for both those with hearing loss (and those who hear perfectly). Matlin uses ASL in the video, but it is also captioned and there is a voice-over for the hearing.

As the Harris case shows, law enforcement didn’t learn much from the Pearl Pearson incident. Those of us with hearing loss need to be very very cautious when you’re pulled over. The visor card is a good place to start.

 

*This essay is adapted from “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids.”

How Dogs Can Help with Hearing Loss

One of the dangerous side effects of hearing loss is isolation. You have trouble hearing in social gatherings, so you tend to say home. Isolation can lead to depression, and depression is a risk factor for cognitive decline. Cognitive decline can end up being dementia.

Max in snow
It was a very cold day!

You can’t cure hearing loss, but you can treat it. The most direct way is with hearing aids, but sometimes hearing aids aren’t enough to make socializing easy, and so the threat of isolation, depression, cognitive decline and dementia is still there.

Here’s another way to treat hearing loss: Get a dog!

I don’t mean a service dog — though they can be very useful for people with hearing loss. I mean a pet.

I’ve always liked long walks, and for years I distracted myself over three- or four-mile jaunts with recorded books. I listened to everything from Moby-Dick and Anna Karenina to novels by Carl Hiaasen and Elmore Leonard.

But then I went deaf. Or, more accurately, my hearing declined to the point where I could no longer hear with headphones. I had sometimes walked with friends, but around the same time they dropped away for one reason or another. I was often left walking with my thoughts. Nothing wrong with that. Sometimes I’d even take a notepad along in case I thought of something particularly brilliant.

But thinking — brilliant thoughts or not — was not enough to get me out day after day. So I got a dog, a puppy. At first I was out four or five or six times a day, for short puppy-relief walks. As he got older, we resumed my long morning walk.

A dog is not for everyone. Weather is no deterrent to a dog’s need for a walk, as you can see in the picture of my dog Maxie on a sub-zero day. If you are unsteady on wintry days, you might want to consider a small dog. Or even a cat.

I like all kinds of weather, and I appreciate the push out the door on a cold day. A dog prompts conversations with strangers, and over the years I’ve made new friends, whom I know mostly by their dogs’ names, and a slew of casual acquaintances. It’s easy for me to hear in the open air, and I often have conversations at the dog park, or sometimes stopping for a chat mid-walk. We would talk about dogs at first, but as time went on, some of my dog friends became real friends, and then we talked about everything.

Plus, a pet has other health benefits. It can lower your blood pressure and cholesterol, says the Centers for Disease Control and Prevention, and — thanks to its boundless, unconditional love — help reduce your stress. Also, dog owners get more exercise than non-pet owners, and the physical activity helps older dog walkers have greater mobility inside their homes than others, according to studies funded by the National Institutes of Health.

I miss listening to recorded books, but on the other hand, walks with my dog have helped me become much more aware of the sights around me — cherry trees in the spring, branches glittering with ice in the winter, a hawk soaring, a raccoon in the crook of a tree — and the sounds as well, including conversation.

A baby probably would have the same result — everyone talks to parents with babies — but I’ve had my babies, and my babies are not yet ready to have babies of their own. So for now I enjoy the benefits of a different kind of child — a furry, four-legged one.

 

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

This essay first appeared on AARP Health, August 17, 2016.

No Wheelchair Ramp for the Deaf

Getting hearing access for those who are deaf or hard of hearing is a little more complicated.

No Wheelchair for the Deaf

One accommodation for the hard of hearing is an American Sign Language interpreter. But only a small minority of those who need it, use it. — Getty Images

 

 

Trying to get accommodations for those of us who are hard of hearing or deaf can be a long, tough slog.

Two years ago, the U.S. Equal Employment Opportunity Commission (EEOC) filed a lawsuit against shipping giant FedEx Ground, charging it with discriminating against its deaf and hard-of-hearing employees and job applicants for years.

The EEOC alleged that the company violated federal law by failing to provide needed accommodations, such as closed-caption training videos, scanners that vibrate instead of beep, flashing safety lights and American Sign Language (ASL) interpretation.

FedEx filed a motion to dismiss the suit, but this year a federal judge denied the motion. The case is still under litigation.

All of which brings me to the sticky issue of accommodations — namely, that no one type works for all. There is no wheelchair ramp equivalent when it comes to hearing loss.

Although the FedEx case involves the specific needs of a particular workplace, the problems of hearing access challenge all of us and make asking for hearing access — even for something as simple as a better-equipped lecture hall — complicated. Which access do you ask for?

One accommodation that is routinely offered is an ASL interpreter. The problem is that only a small minority of those with hearing loss (less than 5 percent) use ASL. It’s no more helpful to most than an interpreter speaking Hungarian would be.

Among the most widely used accommodations, found in theaters, houses of worship and public gathering places, are infrared or FM headsets. The person with hearing loss borrows a headset from the venue. Sound, which travels through the regular sound system and then wirelessly to the headset, is amplified. Sometimes these systems work well. More often they are helpful to those with milder losses but not for anyone else. They also work only as well as the microphone. It the microphone is badly positioned, the headsets won’t deliver clear sound.

The technology that gets people most excited is induction looping. (Here’s a short video about it.) This, too, works through the venue’s regular sound system, and the sound quality is often excellent. It consists of a wire run around the perimeter of a room that transmits a signal, again wirelessly, to the audience member’s own hearing aid or cochlear implant, set to the telecoil setting. If a hearing aid does not have a telecoil, or the user doesn’t have hearing aids, headsets similar to those used for FM devices can be worn. Sometimes hearing people use them, just to hear better.

For some, the best option is captioning. This can be open captioning on a shared screen, similar to the captions on your television or subtitles on a movie. Or it can be closed captioning, sent to your personal device (an iPhone or iPad) or one provided by a theater. Generally this kind of captioning, called CART, which I described in some detail a few months ago, is live.

Scripts can also be scanned or typed into a new device being tested by Globetitles. It sends prescreened captions to personal devices, including computer and television screens, tablets and smartphones. The captions appear as red type on a black background, so they don’t bother others. You can see a sample by clicking on the Globetitles link.

Unfortunately, no single system fits all needs. Some think captioning serves the largest number of people. Others like looping because you don’t have to do anything except change the program on your hearing aid. Live captioning could be adapted to the kind of Sony glasses used in Regal Cinemas, or something like Google Glass could put captions right before your eyes.

Most venues will probably continue to offer one form of listening assistance (or none). But if that assistance does not serve a person with a hearing disability when another type of assistance would, that person can bring a lawsuit under the ADA.

As Lise Hamlin, the Hearing Loss of America Association’s director of public policy and state development, emailed me in a discussion about accessibility: “You might be able to make a case for both a listening system and captioning under the ADA. The relevant phrase is ‘effective communication.’ The key is providing effective communication to each person who needs it. If even one person is denied effective communication, they can file a claim.”

Most of us don’t want to get involved in a lengthy lawsuit — we just want to understand the play or the sermon or the mayor’s announcement or the community meeting or the visiting candidate. Is that so much to ask?

This post first appeared on AARP Health on August 10, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

Join the Fight for Affordable Hearing Aids

H

Now, more than ever, we have an opportunity to change the face of hearing health care in America. The Health and Medicine Division (formerly the Institute of Medicine – IOM) of the National Academies of Sciences, Engineering and Medicine issued a groundbreaking report on June 2, 2016.

Our goal is to raise awareness about the report, build a community of consumers to share their unique story about their hearing loss, and ultimately, to lead the way in making hearing health care affordable for the 48 million people in the United States with hearing loss. The time has come – join HLAA and help us lead the way to affordable hearing health care.

HLAA is proud to be the only consumer organization for people with hearing loss to sponsor the study, Hearing Health Care for Adults: Priorities for Improving Access and Affordability.  

Here’s what you can do:

  • Read the 12 recommendations in the report which documents the critical nature of hearing loss; the recommendations underscore hearing loss as a significant public health concern. See also: Report in BriefAction Guide for Individuals and Families, Action Guide for Hearing Health Care Professionals
  • Spread the word about the Academies report – tell your primary care physician, your congressman and senator – don’t be shy! The more people who know about the report, the more likely we can affect change – help HLAA lead the way in implementing the 12 recommendations.
  • Seek help for your hearing loss; you are not alone, 48 million people in the United States have hearing loss, yet 67 to 86 percent of adults (50 years and older) who may benefit from hearing aids do not use them. We need your help to change this statistic. 
  • Share your hearing loss story here and on theHLAA Facebook page and on @HLAA on Twitter. HLAA CAN impact change with your help. The time has come – people need to be able to get the hearing health care they need, including hearing aids, at an affordable price. Can we count on you?
  • Become a member of HLAA – there is strength in numbers and we have a network of chapters across the country where you will find support and camaraderie.

Give That New Hearing Aid a Chance

Don’t reject a device too quickly. You need time to adjust.

Give Time to Adjust to Hearing Aid

             Don’t give up on hearing aids. There’s a right one out there for you.                              — Phanie / Alamy Stock Photo

I’ve been wearing hearing aids for almost 20 years, so you’d think getting a new one wouldn’t be a big deal. But it is! It can take weeks to adjust to a new level of sound.

I’m now approaching the 10-week mark, trying out my third device. Most hearing-aid manufacturers allow a 30- to 45-day fully refundable trial period. (The audiologist may charge a small nonrefundable fee for expenses, usually about $100.) If you don’t like the first aid you try, try another, and then another.

When the audiologist first tested my hearing this spring, she wasn’t sure a new hearing aid would help me enough. I fully qualify for another cochlear implant, but that’s a major decision. It involves surgery, and you never know how well it will work. It’s also an irreversible step.

So my audiologist, Ellen Lafargue at the Center for Hearing and Communication (CHC) in New York, suggested I at least try a new hearing aid. She fitted me with a powerful type known as an RIC (receiver in canal). A soft plastic mold fits snugly in your ear canal and is connected by a tube to a behind-the-ear component, which holds all the mechanics.

The RIC felt tight, and I also wasn’t used to something completely blocking my ear canal. But I know it takes time to adjust, so I wore it. Less than 24 hours later, I had a vertigo attack. Out of the blue as I was walking to meet a friend for lunch, I suddenly saw the world spinning around me. I’m no stranger to vertigo, so I recognized the symptoms immediately. I staggered to the nearest bench and texted my friend, and she helped me into a cab and got me home before I passed out or vomited. I had two more attacks in subsequent days.

I took the hearing aid back to CHC, and they punched a hole in the ear mold — a vent, to allow the air pressure to escape. They also ordered me a smaller ear mold. Two weeks of my trial period were up before I even started wearing the new aid.

At first I hated it. Everything sounded so loud! But I persisted, and although everything stayed loud, I realized voices were becoming clearer as the days went by. I did a little self-testing using my old hearing aid and the new one, and I realized I was hearing much better with the new one.

I was ready to buy it, but first I wanted to try one of the Made for iPhone hearing aids. I loved the idea that you could program the aid on your phone, and that you could save the programming that worked best in specific environments and automatically go back to that program later. Unfortunately, the Made for iPhone aid really didn’t help my hearing.

I was about to seal the deal on the $3,000 RIC when my audiologist received notice that a new Advanced Bionics hearing aid had become available. It’s intended to work with the Advanced Bionics cochlear implant in my other ear. The two devices “talk” to each other. So I agreed to try that one for a while. The “talking to each other” program won’t be available till September. Right now it’s just a plain old hearing aid.

Yesterday, the day I got it, I was ready to take it right back. The world seemed to be rumbling with thunder. My husband’s voice had gotten deep and husky. My car, even with the windows closed, was so noisy I couldn’t hear the radio.

But today the thunder is receding; my husband’s voice sounds more recognizable. I have a follow-up appointment with the audiologist next week. I have a feeling that by the time I get there, this hearing aid will be working fine for me. Especially because there’s a financial incentive: It’s $1,000 cheaper than the RIC.

The learning curve — for your brain, not your ears — is steep when you’re adjusting to a new hearing aid. But wearing the hearing aid as much as possible every day is the only way you’ll ever come to love it. Or maybe you’ll realize after two or three weeks that the world is still thundering. So send that one back. But don’t give up on hearing aids. There’s a right one out there for you.

This post first appeared on AARP Health, on Friday August 5, 2016.

Hiding Your Hearing Loss? Not Worth It

New York’s second annual Disability Pride Parade on July 10 included representatives of various national hearing loss associations. They marched because hearing loss is a disability, but more importantly, because hearing loss is a hidden disability. We can never remind people too often that people with hearing loss need accommodations as much as someone in a wheelchair.

unnamed
HLAA-NYC member Ruth Bernstein at the Disability Pride Parade, with an HLAA umbrella.

 

Like most hidden disabilities, hearing loss comes with baggage that contributes to people’s reluctance to be open about the condition. Historically, hearing loss has been considered a sign of old age, impairment and declining mental capacities. Those with mental conditions, even when those conditions are controlled with medication, face similar worries about revealing their hidden health issues.

But this secrecy can have a deleterious effect on professional and personal relationships, affecting job performance and mental and physical health. I wrote about this in 2013 in a New York Times article headlined, “Quandary of Hidden Disabilities: Conceal or Reveal.”

Keeping a secret like this, living every day pretending you’re something you’re not, is debilitating. It undermines your confidence. You wonder if the disability is affecting your job performance and, if it is, if you’re the only one who doesn’t know it. You worry your employer or your colleagues will find out and you’ll lose your job. Firing someone for a disability is forbidden by the Americans with Disabilities Act, but employers find ways around it.

There is also the stress of having a condition that may get worse. With hearing loss, the progression is often unpredictable. I first lost my hearing in one ear when I was 30. I never dreamed that by the age of 60 I’d be profoundly deaf in that ear and close to it in the other. Because the cause of my hearing loss is undiagnosed, I also live with the worry that it may be a symptom of an as-yet-undiagnosed larger medical condition.

Those with disabilities bear the responsibility to speak out, but others should be sensitive to the fact that they may not feel confident enough to do so.

There are ways professionals can avoid inadvertently discriminating against people with hidden disabilities. Medical professionals need to recognize that complaints about depression and anxiety, as well as memory loss, may reflect an underlying, unacknowledged hearing loss.  Psychotherapists need to recognize the symptoms of a hidden disability with new patients, draw them out about it, and then confront the issues that the disability contributes to.

Finally, those who work with the elderly have a special responsibility to recognize hearing loss. Fully 50 to 80 percent of their clients will have hearing loss. It’s easy to mistake unrecognized — or even acknowledged — hearing loss for cognitive decline or even dementia.

 

This post first appeared on AARP Health on June 27, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.