Young and Deaf: Lessons for All Ages

Bouton Blog - Young and Deaf

Boomers and millennials living with hearing loss experience similar and different challenges. — Shutterstock

At 33, Anna Pulley has already gone through a lifetime of what she wryly calls “adventures in deafness,” a litany of funny, frustrating, painful experiences that those of any age with hearing loss can appreciate.

Pulley recently wrote an essay about it for New York magazine’s website The Cut. Titled “My Ridiculous, Romantic, Painful Adventures in Deafness,” it’s been shared by 1,900 readers at last count, meaning that hearing loss is beginning to hit home not only for boomers but also for millennials.

I loved the piece. It was humorous and honest and painfully familiar to me, as I’m sure it was to other older people with hearing loss. We’ve all had  — and continue to have — these kinds of “adventures.”

To be sure, Anna’s  issues with dating and finding a job are ones I haven’t had in years. Still, the experiences resonate: “You have a seductive face,” her partner tells her in an intimate moment. “I crane my head slightly back to look at her mouth, and say, ‘I have a duck face?’ ”

Romance aside, daily life is a challenge: “I catch words but not sentences. I read lips but don’t know sign language. I’m worthless in bars, group settings, any instance where someone is not looking directly at me in a quiet room. Ordering a pizza over the phone has led to anxiety attacks…I repeat things that have already been said. I make guesses at conversations that are met with blank stares or outright laughter. I nod recklessly and make bold assumptions.”

She writes of the heartbreak of working as a teacher and being unable to understand the whispered confession of a student whose boyfriend was threatening her.

Like many, Pulley is lonely with her hearing loss. “I want to be around people,” she writes, “but it’s difficult to convince them to come to my house and sit in a well-lit, silent room with just me. My friends are sympathetic and they try. But there’s only so much they can do. Most days I vacillate between acceptance and a barely perceptible desperation.”

And then there’s the confusing, exorbitantly expensive world of hearing health care. Pulley writes about the frustration of being able to afford only one hearing aid. Many retirees on fixed incomes know exactly how she feels.

I also have to admit that I was gratified that she was helped by information in my book, Living Better With Hearing Loss. She had rejected a string of hearing aids over the years because the booming sounds they brought still made things incomprehensible. What “no audiologist or ear, nose and throat doctor had told me in the 14 years I had been trying and not trying to wear them…is that hearing aids take time to work. I had to learn about it from a book,” she wrote.

Here’s my advice to Anna and anyone losing their hearing: Find others like you. It’s great to talk to people who understand what you’re going through. You could try joining the Hearing Loss Association of America (HLAA), especially if there is a chapter where you live. (Chapters are listed on the organization’s website, hearingloss.org.) Or try ALDA, the Association of Late Deafened Adults. Or the Alexander Graham Bell Association, AG Bell, for families and children with hearing loss. Unfortunately, age-wise, you fall through the cracks: probably too young for ALDA and HLAA (although there are some dynamic younger members of HLAA and even some groups devoted to young professionals). It’s worth checking with these groups for education and support.

Pulley may have more company soon. Her generation is developing hearing loss from everyday noise exposure — earbuds, video games, sports arenas, concerts and plain old daily life. I hope young people listen. Her poignant observations nearly made me cry with sympathy.

I hope that Anna’s article is read by many young people. Her hearing loss is not noise induced but most is. Millennials, and boomers, this could happen to you, if you don’t take care of your ears.

Listen to Anna Pulley: Hearing loss is hard. And it’s not fun.

 

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.

This essay first ran on AARP Health on July 20, 2016

 

 

Deaf? Hard of Hearing? Hearing Impaired? Be Careful What You Call Us

Hearing blog

The debate over how to refer to those with hearing loss. —Illustration by Scott Davis/AARP

Recently, the headline for one of my columns used the term “the hearing impaired” to refer to people with hearing loss. As soon as I saw it, I knew there would be protests. The debate over what exactly to call people with hearing problems has raged for years.

Should we use the old-fashioned-sounding term “hard of hearing”? Or refer to the “hearing disabled”? Or maybe the cumbersome “people with hearing loss”? Even some of the major hearing associations can’t decide. The National Association for the Deaf, for example, is OK with the use of “hard of hearing,” while the Hearing Loss Association of America recommends “people with hearing loss.”

As for the headline — which was changed — calling a group “the hearing impaired” suggests that the hearing disability defines the person. Many of those with hearing loss agree that it’s fine to describe a person as having a hearing impairment but not to use “the hearing impaired” to describe a category of people. For the same reason, many people with diabetes don’t want to be called “diabetics.”

The emails we received from those unhappy with the headline touched on this and other points.

The AARP fact checker for my column, who was born with hearing loss, pointed out that the Merriam-Webster dictionary defines “impaired” as “being in a less than perfect or whole condition: as disabled or functionally defective.”

“Contrary to the definition, I believe that I am both whole and unable to hear,” she wrote in an email.

Several AARP readers with hearing loss had similar comments: “If I tell people that I am hearing impaired, they think something is wrong with me. However, if I tell people I am deaf, they say nothing is wrong with me except that I can’t hear,” wrote one.

But others saw it differently. “I don’t see why someone would object to the phrase, ‘hearing impaired,’ because that is what it is,” one reader emailed. “If they want to hide their disability, then why should they feel any entitlement to better services?”

On the other hand, many hearing-health professionals blithely and frequently use the term “hearing impaired.” And people with vision loss routinely use the term “vision impaired.” Go figure.

So what exactly do we call ourselves?

People with hearing loss

The only term that seems to be accepted by everyone is “people with hearing loss.” There are two problems with that phrase: It’s cumbersome and it has no easy singular. I don’t think many people would say, “I am a person with hearing loss.” You might say, “I have a hearing loss,” or, as I often do, “I have a hearing impairment.”

However, a number of national organizations have chosen to shift away from using hearing loss altogether in favor of more positive language. The Hearing Association of New Zealand began as the League for Hard of Hearing. Better Hearing Australia avoids any suggestion of disability. Britain’s Royal National Institute for Deaf People (RNID), founded in 1911, changed its name 100 years later to Action on Hearing Loss.

Hard of hearing

Several hearing associations, including the Canadian Hard of Hearing Association (CHHA) and the International Federation of Hard of Hearing People (IFHOH), use this term. The Hearing Loss Association of America was originally called Self Help for Hard of Hearing People, or SHHH. These days “hard of hearing” sounds old-fashioned.

Deaf

I often use this in casual conversation, but not in my writing, because in fact I am profoundly deaf in one ear and have limited hearing in the other. As I said in my book, Shouting Won’t Help, the term “deaf” is politically incorrect for someone like me, but I still like to use it. It’s blunt and sassy. It’s a way to talk back to my hearing loss.

Having disabilities, but not disabled

“People with disabilities” is the preferred term because it refers to people as people, not as their disability. But even some advocacy organizations use “disabled.” The newspaper Able describes itself as a newspaper “positively for, by and about the Disabled.” Disabled American Veterans has held onto its name despite the turn in fashion. But consider that the act that protects people with disabilities is called the Americans With Disabilities Act, not the Disabled Americans Act.

In other words, people with disabilities, including hearing loss, want to be recognized because they want equal access, but that doesn’t mean they want to be defined by their disability. When thinking about the language of disability, keep those principles in mind.
This article first appeared on AARP Health on July 11, 2016.

Relief from the High Cost of Hearing Aids?

Last month the prestigious National Academies of Sciences, Engineering and Medicine issued a report with a series of recommendations that, if adopted, could revolutionize the way consumers receive and pay for hearing health care in the United States.images

Unfortunately, this report was not widely covered in the mainstream press, and although I wrote about this at the time, I’m also addressing it here, for those who may have missed this important development.

About 30 million Americans have hearing loss, but 67 to 86 percent of those who could benefit from hearing aids do not use them. The report called hearing loss “a significant public-health concern.” It is of course also of significant personal concern for those with hearing loss.

The June 2 report by the Committee on Accessible and Affordable Hearing Health Care for Adults represented input from experts in hearing research, public health, geriatrics and audiology, as well as from industry and consumer groups.

Consumers hope the recommendations will ultimately result in relief from the high cost of hearing aids, little insurance coverage and the limited availability of hearing professionals.

The committee listed 12 recommendations, but here are the four I consider most important.

  • Make buying a hearing aid easier by removing the Food and Drug Administration’s regulation requiring a medical evaluation or a waiver before a hearing aid can be purchased.

    It’s not difficult for consumers to waive the medical evaluation, but many people feel they are required to see a doctor before buying a hearing aid. This is a stumbling block for many. As the report pointed out, the only time a medical visit is essential is if you display “red flag” conditions, including sudden or rapidly progressing hearing loss within the previous 90 days, acute or chronic dizziness, pain or discomfort in the ear, or a visible ear deformity.

  • Promote hearing screening in wellness and medical visits.

    Most primary care doctors do not conduct even a cursory screening for hearing loss, even among the elderly. Failure to recognize hearing loss can be a threat to quality health care. A patient may not hear the doctor clearly, for instance.

  • Make lower-cost, over-the-counter hearing devices more widely available by implementing a new FDA category for them.

    This refers to personal sound amplification products, or PSAPs, and other less costly over-the-counter hearing devices.

  • Improve the compatibility of hearing technologies with other communications systems.

    This refers not only to compatibility of hearing aids with other hearing assistive devices and technologies, but also to developing “open platform” hearing aid programming. This would allow health care professionals — or, eventually, the device owner — to be able to program the settings on any device from any manufacturer, which is currently not the case.

In many ways, the report echoes the highly critical findings of a White House advisory group’s report last October. The group, as reported in the New York Times , said that industry concentration and overregulation meant that hearing aids had “not experienced the dramatic reductions in price and increases in features that have been routinely seen across consumer electronics.”

“When compared in complexity to today’s smartphones costing a few hundred dollars each,” the report said, “even premium-model hearing aids are simple devices but can cost several thousand dollars.”

The response to the White House report, as well as to these new recommendations, has varied widely among industry, consumer and health care groups — “hailed by some groups and denounced by others,” noted audiologist Barbara Weinstein, writing on the website Hearing Health & Technology Matters.

But she urged all parties to work toward common goals. “It is a win-win for all stakeholders to close the gap between the proportion of persons with untreated age-related hearing loss and the proportion of those who enjoy a measurably high quality of life as the result of hearing health care interventions purchased through audiologists.

“We are part of the problem and part of the solution. Let’s change that balance and remain essential,” she said.

One group supporting the recommendations was the Hearing Loss Association of America HLAA, the largest consumer group in the United States representing people with hearing loss. You can read HLAA’s statement here.  Many of the recommendations in the report echo earlier HLAA policy recommendations.

You can read a summary of the report here. The full report — “Hearing Health Care for Adults: Priorities for Improving Access and Affordability” — is available from the National Academies Press online or by calling 202-334-3313 or 800-624-6242.

Click on the link to read.  New Report Pushes for Cheaper, Easier Hearing Aids.

 

This post first appeared on AARP Health, June 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 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

 

 

It’s Summertime and the Livin’ Is Noisy

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Monday is the 4th of July and possibly one of the worst days of the year for your ears. The 4th is a day of parades and picnics — but also fireworks, which are at the top of my list for damaging sources of summer noise exposure. Read here: HuffPost.

First posted last year on AARP Health. Thought readers might appreciate the reminder: take care of your hearing! And the noise thermometer.

 

A Weekend With “My People”

I’ve just spent six days in Washington DC with “my people” – the deaf and hard of hearing members of the Hearing Loss Association of America.uRLuPBWAxgnEBJT1a7h-oJduHnuj0stQ5l9xKf_TH6Ytf3O9TDtmEZ7X_EklCI6TDvDn=s170

It was our annual convention, held this year in Washington DC at the Washington Hilton, a short walk from the Dupont Circle Metro stop. Lots of restaurants and shops nearby for meals out, and the hotel had a big terrace and a gorgeous outdoor pool.

But I didn’t go out much because what was happening indoors was so interesting. First was a day of meetings with our HLAA board of trustees and our new executive director, Barbara Kelley, who has many excellent ideas for retaining and expanding HLAA’s place as “the nation’s voice for people with hearing loss.”  Then the convention got into full swing.

This year the event kicked off with a discussion of the long-awaited report from the National Academies of Sciences, Engineering and Medicine, which earlier this month issued its recommendations This was followed by a report from the President’s Council and Science and Technology. I’ve written about both on this blog: Good News for People With Hearing Loss. and New Report Pushes for Cheaper, Easier Hearing Aids. These reports are potential game changers for the hearing loss industry (including retailers and audiologists) and an encouraging step for consumers like me. Many of HLAA’s recommendations are reflected in the statements, and the organization strongly endorsed the findings.

Dan Blazer, chair of the NAS Committee, spoke about the committee’s deliberations, enlightening the audience about some of the thinking behind their decisions. Susan Graham, a member of the President’s Council, did the same for her committee. The two committees came to very similar recommendations but worked in parallel. PCAST, which was published first, had no idea what NAS would recommend. NAS did its best to ignore the PCAST report and make its own unbiased decisions.

The Friday morning Science Research Symposium is always a highlight of the convention. This year Dr. Frank Lin of Johns Hopkins Medical Center assembled a panel that included a number of prominent researchers. Hinrich Staecker of the University of Kansas Medical Center  spoke about the challenge of developing drugs to reverse sensorineural hearing loss. His discussion of the intricacies of this kind of drug development – including the challenge of finding a way to deliver the drug to the cochlea – was fascinating. Wade Chien, also of Hopkins spoke about research in stem cell therapy for restoring hearing.

They were followed by two audiologists who offered some innovative – and in some ways radical – ways of connecting audiologists with patients in underserved areas, where because of poverty and other health problems the incidence of hearing loss is especially high. Catherine Palmer of the University of Pittsburgh School of Medicine and Nicole Marrone at the University of Arizona  Department of Speech, Language and Hearing Sciences, offered similar solutions: if you can’t get the patient to the audiologist, take the audiologist to the patient.

The exhibition hall includes booth after booth of exhibitors offering devices and gadgets and services for people with hearing loss. If you’re a tech geek, you can get into some deep technical stuff here. If you’re like me, you may just want to learn about hearing rehabilitation or captioned telephones.

But perhaps the highlight of the convention is the gathering together of so many people with hearing loss from all over the country, and in this case all over the world, since the convention was held in tandem with that of the International Federation of Hard of Hearing.

Everyone wears name tags with their home towns, and it’s easy to strike up conversations. This is something many of us find difficult in the hearing world, because we always worry that we may not be able to hear the response. No one here minds repeating themselves four times until you finally get it. It’s especially fun for me because many of the attendees have read my books on hearing loss and are eager to talk – a writer’s dream!

If you have hearing loss and you feel alone and maybe confused, with no one around who understands what you’re experiencing, join HLAA. Come to our convention next year. Sit next to me at breakfast or in a panel discussion and introduce yourself. This convention is a wonderfully supportive environment where for once, we – the hard of hearing, the late-deafened adults, the hearing impaired (a term frowned upon), the people with hearing loss – whatever you want to call us, are in the majority. It’s fun.

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If you were at the convention and want to add your own impressions, please scroll down (way down) and comment.

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.

 

 

Not Just a Genius

This is from Arlene Romoff, to whom we all owe gratitude for her efforts on theater captioning. images
The tweet is great. Lin-Manuel Miranda is not only a genius but a genuinely decent human being.

“I posted this on Facebook – that Lin-Manuel tweeted about the great audience for the captioned performance of Hamilton.  Amazing!  They really wanted to do it.”

https://twitter.com/Lin_Manuel/status/741475233538924544