Memo to Airlines, from a Hard of Hearing Frequent Traveler

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Bouton Blog - Open Letter to Airlines

                                                                        Photo: Getty Images

Dear American Airlines, Delta, United, Jet Blue, and the whole rest of the pack:

I know you’re having a hard time this summer, what with three-hour lines at security and dealing with unhappy, cramped travelers.

I hate to burden you with another complaint, but really, can’t you do just a few small things to make life easier for travelers with hearing loss? I hope you realize that we represent 1 in 5 of your customers. Of the 50 million Americans with hearing loss, quite a few end up on your airplanes.

 I’m the first to agree that it is our own responsibility to notify everyone about our hearing loss and our needs and to prepare extra carefully for any trip. I made suggestions for hard-of-hearing passengers in a post earlier this year.

But airlines, you need to do a better job. And you can! None of my suggestions are particularly difficult to implement. Airlines like Emirates, with passengers speaking many languages, have been doing it for years.

In the meantime, here are things the airlines could provide right now to help us:

The correct disability service. When we reserve online, there is a space to note a disability and the kinds of services offered. Why, then, is someone who checks “Deaf and Hard of Hearing” offered a wheelchair? This has happened repeatedly to my hard-of-hearing friends. I also have deaf friends who have been offered Braille options. Please ask us to specify what services we need. How about someone to transcribe information? A sign language interpreter? Even assurance that a flight attendant will make a special effort to tell us anything we need to know about what’s going on?

Better phone reservations. Most of us with hearing loss are pretty adept at computers. It’s the easiest way to communicate. But sometimes a phone call can’t be avoided, and an agent with a heavy accent can make information even harder for us to understand. Please politely allow us to be transferred to an agent who speaks English clearly.

Captioned safety announcements. Delta, you’ve come a long way toward helping those of us with hearing loss with your captioned safety videos. They’re even funny, so they hold our attention. But midair, when the pilot comes on and says something over the speaker, unfortunately, it sounds like just one long incomprehensible garble. It could be anything from, “Hello, folks, we’re turning off the seat-belt sign now,” to, “Hello, folks, we’re about to encounter some turbulence that may knock you off your feet, so be sure to sit down and buckle your seat belt.” Why not live-caption this information on the screens right in front of our eyes? Voice recognition software is getting better and better.

Pre-boarding the plane. Lots of progress here with new electronic displays that tell you what zone is boarding, as well as information about upgrades and standby status, so the hard-of-hearing passenger isn’t left in total confusion. In the past I’d often been brushed off by a gate attendant and told to go take my seat until my zone was called. (This is against the rules, by the way. Under the Air Carrier Access Act (ACAA), when someone identifies himself as a person with a hearing loss, the gate attendant must provide equal access to the boarding announcements, even if that means coming over to where the passenger is sitting to repeat the announcement.) More experienced now, I tell the gate attendants before boarding starts that I’m hard of hearing and won’t hear the zones. They often offer me pre-boarding, which also means that I’m not battling for overhead bin space.

Menus for food service. When food service starts, have the attendant bring along a menu that describes our choices. Don’t just say “Chicken or pasta?” Some of us avoid certain ingredients, so it’s really helpful to know if there are allergens like nuts or dairy. I’d much rather find this out before it’s on my tray than after. It’s wasteful, as well. I know I can ask for a special menu, but I usually forget.

Captioned movies. Increasingly, some are captioned, even ones in English. Thank you for that. But they all should be.

In case you’re not willing to do this voluntarily, the U.S. Transportation Department (DOT) may soon be stepping in. This week the Hearing Loss Association of America (HLAA) announced that the DOT had invited Lise Hamlin of HLAA to be part of an advisory committee on accessible transportation, which is considering changes to in-flight entertainment and communication, as well as rules about service animals and accessible lavatories.

In an announcement to members, HLAA noted that the path may be rocky. “We apparently have our work cut out for us,” the group said, referring to challenges from the airline industry over DOT’s authority to make these changes.

Consumers, it’s your turn. The HLAA advises, “If you fly this summer and don’t get the access you need, please file a complaint.” The association also suggests letting Lise Hamlin (advocacy@hearingloss.org) know about the problem.

This article first appeared on AARP Health on May 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.

 

 

Yes, I Have Hearing Loss, Talk to Me Anyway

This bears repeating: It’s important to be included in the conversation.

True friends and understanding family will do that. They’ll repeat, they’ll rephrase, they might even spell it out. One friend pulls out a notebook and jots down the key words. It helps if I parrot back the parts of the sentence I did hear, so they understand what I missed.

But not everyone is as patient. How many times have I heard, “Never mind, it isn’t important”? Mimages-1aybe it isn’t, but I still want to hear it.

Nevertheless, constant repetition of something trivial does get tedious for the speaker — and for me! —  and so, sometimes in a social situation, I just let it go. I’d rather the person keep talking to me than understand every word.

(This is not something I’d do in a business meeting or in any important discussion, by the way. It’s just for social chitchat. And before you start lecturing me, I do use assistive devices, like an FM system or a Roger Pen. Sometimes I still just can’t hear.)

Is this wise? Do I really want to hear only part of a conversation? Maybe, depending on who the speaker is. What I do want is to be included in conversation. I want to be invited places. I want to be seen as someone fun and interesting, rather than as a constant drag on conversation. I know readers will criticize me for saying this. We people with hearing loss, especially advocates like me, are supposed to demand our rights, not lie down and surrender.

So why do I do just that — lie down and surrender? Why do I accept only part of the conversation? I think I have a good reason. A huge danger for people with hearing loss is isolation. Isolation is not good for your mental health. It can lead to depression and cognitive decline.

If I asked for clarification of every word, social chitchat would quickly bog down. As a result, I might not try again next time. That’s how isolation occurs.

For now, I listen closely, I try to gauge what I really want to hear and selectively ask the speaker for clarification. The rest of the time I smile and nod, or frown and sigh, or raise my eyebrows, or laugh appreciatively. How do I know to do this without knowing what was said? I follow the speaker’s face. The clues are all there. Of course I run the risk of a grossly inappropriate misreading of the speaker’s face. But that’s a risk I’ll take to keep people talking to me.

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For more about living with hearing loss, read my books “Shouting Wont’ Help “and “Living Better With Hearing Loss,” both available at Amazon.com.

 

This article first appeared in a slightly different form on AARP Health. 

Everything You Think You Know About Hearing Loss.

And Here’s Why.

May is Better Hearing Month and a good time to dispel some myths and misunderstandings about the deaf and those with hearing loss.

1. Hearing loss comes with age and there’s nothing you can do about it.

12 Myths About Hearing Loss False. This may have been true many years ago for some conditions, but with today’s advances, nearly 95 percent of people with hearing loss caused by problems with the inner ear can be helped with hearing aids, according to the Better Hearing Institute.

2. A little trouble hearing is normal. But wait until it really gets bad before going to a specialist.

False. The longer you wait, the harder it is to treat hearing loss. That’s because the auditory system in the brain stops recognizing sound as your hearing worsens. If you wear hearing aids regularly, your brain can learn to reprogram itself once its auditory system begins getting the proper nerve stimulation.

3. People with hearing loss will understand you better if you speak loudly.

False. I titled my book about hearing loss Shouting Won’t Help. It won’t. Shouting distorts the mouth and makes lip reading difficult. Speak in a normal tone of voice, look at the listener, and articulate clearly.

4. My primary care doctor will tell me if I need hearing aids and refer me to a specialist.

False, mostly. Studies show that only between 17 and 30 percent of primary care doctors do even a cursory hearing screening, even with elderly patients. Almost none do a full hearing test.

5. Providing a sign-language interpreter is helpful to people with hearing loss.

True, but only to a very small proportion of them. Of the 48 million Americans with hearing loss, only 500,000 use sign language. But because signing is a visual expression of deafness, and because plain old hearing loss is invisible, the perception is that most people who can’t hear are sign language users. And they’re not.

6. Classes in sign language can be very helpful for those with severe hearing loss.

True, but only in the way that learning the basics of any language is helpful. The truth is, to become fluent in sign language as an adult is very hard work. American Sign Language is a complex structure of images and letters. There is no direct translation of spoken English to signed English. This makes it especially difficult to learn later in life.

7. People with hearing loss can read lips.

True, to some extent. Some of us do it much better than others. Nevertheless, when speaking to someone who is deaf or hard of hearing, always make sure they can see your lips.

8. Hearing aids don’t work. Better to hold out for a high-tech cochlear implant.

False. Hearing aids work well for most people with moderate to severe hearing loss, and they are considered far more effective than a cochlear implant for these people. Experts recommend a cochlear implant only when hearing aids are no longer effective. If you’re holding off on getting a hearing aid thinking you’ll simply jump to a cochlear implant when necessary, don’t do it. The longer you delay getting your hearing treated, the harder it is to correct.

9. Hearing loss is most common in the elderly.

Wrong again. Hearing loss is most visible in the elderly because this is the group most likely to have severe hearing loss and to wear a visible hearing aid. But 65 percent of those with hearing loss are under the age of 65, and 60 percent are still in school or in the workplace.

10. The only way to treat hearing loss is with a hearing aid or cochlear implant.

False. A hearing aid may be effective, but it’s expensive, averaging $2,400. For some people a $300 consumer electronics device called a PSAP (personal sound amplification program) sold over the counter may be sufficient. If your hearing worsens, you can then move on to a hearing aid.

11. If hearing aids are needed, my insurance will cover it, right?

Unfortunately, no. Some insurers are beginning to include hearing coverage in their plans, but the majority of private and company-sponsored plans do not cover hearing aids for adults, nor do most state Medicaid programs or the Affordable Care Act.

12. Medicare understands the challenge that hearing loss poses to healthy aging and pays for tests and devices.

Hahaha. So wrong. By statute — which would have to be changed by Congress — Medicare does not cover hearing aids or services related to them.

To learn more about hearing loss, read my books: Shouting Won’t Help and Living Better with Hearing Loss, both available at Amazon.com 

This post first appeared on AARP Health: Conditions and Treatments.  Photo: Getty Images

Convention 2016!

It’s not too late to register for the Hearing Loss Association of America’s annual convention, held this year in Washington DC. from June 23-26.

imgresDon’t miss innovative Hopkins otolaryngologist/epidemiologist Dr. Frank Lin, who will update members on the latest research.

Get a first hand report on the influential PCAST and IOM Reports, both of which signal the possibility of significant change in the hearing-aid marketplace.

An Experience Room, new this year, gives you the opportunity to try out hearing-assistive products from many different manufacturers.

Dozens of workshops and lectures cover everything related to hearing loss.

Meet interesting people with hearing loss from all over the globe . Share tips and information. This is especially true this year, when HLAA is hosting the International Federation of Hard of Hearing.

Best of all, spend two days in an environment where you can hear every word! CART captioning, looping, and ASL interpreters are available at every event.

I hate conventions but I love this one. For more information go to HLAA’s website.

What Would Helen Keller Do?

 

“Blindness cuts us off from things, but deafness cuts us off from people.”

Bouton: What Would Helen Keller Do?

                                                                       Helen Keller — Pictorial Press Ltd / Alamy Stock Photo

Did Helen Keller actually say this? No one knows.

She did express the idea in different ways. In one letter she wrote, “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller lost her vision and her hearing when she was 19 months old, from an infection that was probably scarlet fever or meningitis. Like many toddlers at that age, she had some spoken language, which was presumably lost in the trauma of her illness.

Today Helen Keller’s parents would be offered the option of cochlear implants and speech therapy. Because she was also blind, conventional sign language would not be an option. The Deaf-Blind today use a form of sign language called fingerspelling,  or tactile sign language, which Keller herself used. She also learned to speak, although her speech was labored and difficult to follow.

Those with serious hearing loss often cite this quote. Although cochlear implants and hearing aids restore hearing, it may be to limited degree. Even with additional assistive devices and good lip-reading, a person with severe to profound hearing loss may still have trouble following speech in any but ideal circumstances. I know, because I’m one of them.

Nevertheless, I am certain that, given her blindness, Helen Keller would have embraced today’s cochlear implant technology. In a remarkable historic video, Keller speaks about the loss not of sight or hearing but fluid speech:

“It is not blindness or deafness that bring me my darkest hours. It is the acute disappointment in not being able to speak normally. Longingly I feel how much more good I may have done, if I had only acquired normal speech. But out of this sorrowful experience I understand more clearly all human striving, wanted ambitions, and infinite capacity of hope.”

When she died in 1968, at 87, the New York Times cited her many accomplishments: “she was graduated from Radcliffe; she became an artful and subtle writer; she led a vigorous life; she developed into a crusading humanitarian who espoused Socialism; and she energized movements that revolutionized help for the blind and the deaf.” She was a “symbol of the indomitable human spirit.”

It is hard to imagine that she could have “done more good” with the ability to speak. But her quotes suggest that she would have embraced the chance to hear “the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man” — and to respond with speech.

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 appeared in a slightly different form on AARP Health.

Scholarship Opportunities

Two scholarship opportunities:

The HearStrong Foundation is offering scholarships to two college-bound student athletes with hearing loss. For information, click on their  website. This is a national scholarship program.

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Hearing Loss Association of AmericaHLAA New York City Chapter

2016 ANNUAL SCHOLARSHIP AWARD

FOR NYC HIGH SCHOOL SENIORS WITH HEARING LOSS

Applications are time-sensitive. Late submission of materials will disqualify the applicant. Please act on this information as soon as you receive it.

The Hearing Loss Association of America—New York City Chapter is pleased to announce four $1,000 scholarships for high school seniors with hearing loss, to be used toward the pursuit of a college degree or vocational training.

Applicants must have applied to a college or vocational education program, be between the ages of 17 and 20, wear a hearing aid or cochlear implant, and have a grade point average of 3.0 or better. The scholarship is a one-time award given in recognition of academic achievement, leadership qualities, community service, and work experience. Financial need is not a consideration.

To apply for the scholarship, complete all parts of the 2016 SCHOLARSHIP APPLICATION FORM and send by email to borough supervisor, Karen A. Edwards, Manhattan.

DEADLINE FOR RECEIPT OF APPLICATIONS: May 10, 2016

Please write to Karen Edwards for an application: KEdwards9@schools.nyc.gov.