The Language of Disability: It Can Be Hard to Get It Right

Last week I went to a panel discussion organized by the New York Museum Access Consortium. There were four panelists representing different disabilities and a moderator from MAC. The audience was made up mostly of people from disability rights organizations and museum personnel.images

The evening’s topic was “Mindful Communication.” Avoiding hurtful or offensive language when talking about disability isn’t as easy as it sounds. “People first” is a generally accepted standard. To use hearing loss as an example, a person is not “hearing impaired,” because that suggests that the way he or she hears defines who he or she is. We prefer “people with hearing loss.” (For more on parsing terms for hearing loss see my post “Deaf, Hard of Hearing, Hearing Impaired? Be Careful What You Call Us.”) It took me a long time to realize that “hearing impaired” is a distasteful term to many with hearing loss – and I have hearing loss! So I’m relatively easy on others who slip up on the politically correct terms.

After the panelists introduced themselves, with visual descriptions for the blind in the audience, the moderator led the discussion with a variety of questions. I can’t do justice to the full hour’s discussion but a couple of comments stuck with me.

The panelists were asked what kind of language they found offensive. I expected to hear them say that casual ignorant slurs were hurtful. Instead, the answers were much more complicated.

Ansel, who has visible disabilities and uses a wheelchair, said he dislikes it when someone trying to be kind says: “God bless you.” He doesn’t feel the need to be blessed, and finds it condescending. But he doesn’t get angry. “If it makes them feel good, it’s okay.”

Nefertiti, who is blind, dislikes being called “amazing.” When she was growing up, people were always saying how amazing she was. “I was such an amazing kid just for getting up in the morning! It gave me a little bit of an ego.” She prefers to think of herself as “just a human being doing what I do. It doesn’t mean I’m amazing just because I’m blind.” Of the term “disabled” she said cheerfully, “I feel pretty abled.”

In the question and answer period, one museum employee spoke about the difficulty of using correct and acceptable language in written literature like museum guides. “We’re working with a staff with a fear around language,” she said, to nods of agreement from others in the audience. Another of the panelists, Madison, suggested that staff take their lead from the community in question. Nefertiti similarly suggested listening to the person or group and then mirroring the language they use.

This brought the conversation back around to the panel’s topic: Mindful Listening. Mindful Listening is always important, as Nefertiti pointed out. If, for instance, a sighted person offers to help a blind person cross the street, and doesn’t listen to a polite “No thanks,” nobody wins: “The blind person is offended and the sighted person is baffled.”

Some of the more digressive responses were also insightful. One of the challenges Nefertiti faces as a blind woman was something I’d never considered. Being blind, she said, means that she misses the culture of body language. Someone will say “She’s a nice girl but….” Think of all the ways you could end that sentence without saying another word:  With a shrug (suggesting “… she’s not very effective at her job”), with a roll of the eyes (“…. the clothes she wears make her look like a slut”), with a shake of the head (“… not for me!”), with raised eyebrows accompanied by a shoulder hitch (“… who knows what she’ll get into next”). Etc.

A full transcript of the discussion can be found here. 

Coincidentally, this week Major League Baseball announced that it would discontinue use of the term “Disabled List” for players who were injured. The change came about after advocates for people with disabilities complained, according to the New York Times. The Times quoted Jay Ruderman, president of the Ruderman Family Foundation, which encourages greater inclusion of people with disabilities in society: “The disability community identifies with the term ‘disabled,’” he said “When it’s used incorrectly, when someone is injured, not disabled, that’s offensive.” He went on: “People with disabilities do not consider themselves injured….Someone who tears an A.C.L. is not permanently disabled.”

It’s true (usually) that they are not permanently disabled, but should they happen to use a wheelchair for a period of time, they are entitled to the same rights under the Americans with Disabilities Act as people with more permanent disabilities. Nobody ever said the ADA was restricted to those with permanent injuries. In any case, goodbye to the DL and welcome the “Injured.”

Most of my readers have hearing loss. I’d love to hear your comments about terms and comments that offend you.

For more about hearing health, my book “SMART HEARING.” will tell you everything I know about hearing loss, hearing aids, and hearing health. Available online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or NOOK.

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Is it OK if I Leave Now?

Whether or not you are open about your hearing loss, there often comes a point at which you just can’t try to listen anymore.

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Photo by Evonics on Pexels.com

I’m very open about my hearing loss. At this point, in fact, my hearing loss practically defines me, since I write and speak about it. The other night at a dinner party in a restaurant, the woman sitting next to me said she’d heard I was some kind of disability guru. A slight distortion but I like it.

There were seven of us at dinner, the others were in couples, I was on my own and knew only the hosts. They had told me in advance who would be there, so I didn’t have to struggle with names. The specials were on a blackboard, so I knew what I was ordering. The restaurant was reasonably quiet. So far so good.

The woman on my right was a well-known feminist scholar and I was slightly intimidated. But she was funny and friendly and very interesting. She was on my good side so I heard her her well.

After a while it seemed only polite to turn to the people on our other sides. On my left, my bad ear, was a man who was also hard of hearing. His bad ear was facing my bad ear. By twisting and leaning in and trying not to fall into my dinner plate, I caught enough for a reasonably coherent discussion.

Towards the end of dinner, over dessert and coffee, the conversation got more general, and apparently more hilarious, as everyone was laughing. It’s fun to watch people laugh – at least for a while. As it got funnier and funnier. I got more and more tired and stressed.

Under other circumstances- – with closer friends, if I were not a guest – I might have excused myself. But I didn’t know these people well and everyone had been very generous in acknowledging my hearing loss and speaking clearly. Now they were just enjoying themselves, and it seemed wrong to interrupt and ask that I be included. In fact, at that point there was probably no way I could have been included as the restaurant had gotten busy and loud.

The alternative was to excuse myself and leave. But I knew that would break up the conversation and probably end the evening. So I didn’t. Instead I relied on that old standby – faking it. I think it was the right decision.

What would you have done?

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health. Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

 

 

 

Holiday Gifts for the HOH

What’s an HOH? The acronym (pronounced ‘ho’) stands for Head of Household, House of Hades, Head Over Heels …. And Hard of Hearing.

This highly subjective list is for your favorite HOH, last definition. The books are some of my favorites, personal endorsements. The technology is randomly chosen. You may find a better or cheaper brand. Please share in the Comments section.

I’m not going to write about hearing aids, hearing assistive devices or PSAP’s (Personal Sound Amplification Products). Not that they aren’t great gifts: I know a man who gave his sister the hearing aids she couldn’t afford after he landed a new high-paying job.

Books

Here are some of my favorites, shamelessly starting with my own.

*Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss (2018). A primer for veterans of hearing loss as well as newbies – and for anyone who lives, loves or works with someone with hearing loss.

*Shouting Won’t Help (2013) Yup, also by me. A memoir of losing my hearing and — for a while, my sanity — as I tried to adjust to my new self. I did eventually find my way to acceptance, and I share that journey.

*Gael Hannan’s funny and wise The Way I Hear It (2018) is, like my books, a combination of memoir and advice from someone who’s been there.

*Deaf Sentence, (2009). David Lodge’s classic and hilarious portrait of a clueless professor of linguistics coming to terms with aging via his hearing loss.

*El Deafo (2014). Cece Bell’s graphic novel/memoir about a young girl with a great big hearing aid is meant for kids, but this adult loved it.

[These links are to Amazon but you can buy any of them — in paperback, e-book and in some cases other formats – at B&N.com or by asking your local bookstore to order them.]

 

Household Technology

*A sunrise alarm clock. There are lots of versions of this clock, which allows you to wake up to simulated sunrise (or a classic alarm). Wirecutter recommends the Philips Wake-Up Light HF 3520.

*TV Ears, an alternative to turning the set up to a volume that your next-door neighbor can hear. Williams Sound and Amazon both offer a variety of brands.

*A wireless strobe-light door chime. One of the more frustrating things about hearing loss is not being able to hear the doorbell. There are lots of brands, prices, and places to buy them.

*An ASL wall clock. Learn how to sign the numbers as well as what time it is. Available at Café Press as well as other retailers. 51CrF+bHS6L._SL500_

 

Protect Your Hearing

*Musicians earplugs. These allow you to hear what you want to while dampening loud sounds. Available at a wide range of prices, for professional musicians and anyone who loves music. Even if you don’t think it’s loud, it is.

*Noise-canceling earmuffs. Buy the kind made for yard work. They’re much cheaper than the $300 Bose, which is also excellent. Wear them to the stadium and they’ll protect your hearing and keep your ears warm.

 

Personal amplifiers.

*Bose Hearphones. These are $499, but people who use them say they are worth the price. Bose recommends them for “enhancing conversation.” Available at Bose, Best Buy and many other retailers.

*A Pocketalker. A simple and low-cost device for one-on-one conversation with someone with hearing loss. PocketTalker is the Williams Sound brand. Others are available.

Do something good for your favorite HOH and for HOH’s everywhere.

*HLAA Membership. Give your loved one a membership in the Hearing Loss Association of America, or make a donation in their name. You’ll be helping support HLAA’s mission of “information, education, support, and advocacy,” and introducing them to a world of people with hearing loss. “Hearing Life” magazine is a bi-monthly bonus.

 

Readers, what are your suggestions for HOH gifts you’d like to give or get?

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

 

 

 

 

 

I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

“Affordable” Hearing Aids

There’s a lot of talk about “affordable” hearing aids, much of it in anticipation of the Food and Drug Administration’s final approval of an over-the- counter hearing aid. We don’t know the specifics of the future OTC hearing aid but some have speculated that the cost will probably be around $1000.

Comparatively speaking, that is affordable. The cost of high-end hearing aids is approaching $4000 (for one). $3000 is not unusual. Costco’s least expensive hearing aid is $999.  There are less expensive devices, many available online, some of which use the term “hearing aid”, but buyer beware. For some people, they may work well out of the box. Others may end up with hearing aids that aren’t really right for them. As for hearing-aid like devices, PSAP’s or hearables, for some they will be adequate but for others not so good. And if they are too cheap, a 2016 Consumer Reports survey found, they can actually damage your hearing.

But these low-cost alternatives are still a major expense for many Americans, especially older Americans.  Earlier this year a Federal Reserve Board survey found that 40 percent of Americans could not cover a $400 emergency expense without selling something or borrowing.  A $1000 affordable hearing aid is not “affordable” for 40 percent of our population.

Medicare does not cover hearing aids. Some Medicare supplement programs do, as do some other insurance policies. But that 40 percent who can’t find a quick $400 for an emergency probably do not have this level of insurance. The V.A. also provides hearing aids to veterans with service-related hearing loss.

For many, Medicaid is the only solution. Medicaid covers hearing aids for adults in 28 states, including New York State where I live. For a complete list of states and of eligibility requirements for hearing aids, based on the severity of the loss, see this recent article in Health Affairs. Coverage varies widely from state to state, as does coverage for associated services like hearing-aid batteries.

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In this map, the dark red states have the best Medicaid hearing aid coverage. The pink states have no hearing aid coverage. The other states fall in between.

As the Health Affairs article concludes: older Americans “in states lacking comprehensive hearing health care coverage have few ways to access hearing aids or the professional services associated with hearing loss and hearing aid use.” As we know, untreated hearing loss is significantly related to other adverse health outcomes, especially in the elderly.

The Health Affairs study also found that over one-fourth of adults skipped necessary medical care in 2017 because they were unable to afford the cost.

So when we talk about “affordable” hearing aids, let’s remember that that is a relative term.

 

For more about hearing health, read my new book, which will tell you everything I know about hearing loss, hearing aids, and hearing health!Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.