Talking about hearing loss

September 2023

The delicate art of talking about hearing loss

By Paula De John and Katie Cue

How do you let a new acquaintance know you can't hear them, and why?"Sorry, I'm a little hard of hearing," HLAA Denver Chapter member Barb Nguyen explains. Member Paula DeJohn is not so polite. "I can't hear you," she says, or, "I don't hear well." Member Alan Stanley is still trying to get out of the habit, from his military days, of saying "Do what?" "We're deaf," member Charlene Davis sums it up.

"Wait, is that deaf, or Deaf?" Katrina (Katie) Cue, Ed.D, might chime in. Katie is the outreach and consultative services manager at the Colorado Commission for the Deaf, Hard of Hearing, and DeafBlind. She wears hearing aids, uses sign language, and was in the "hearing impaired" program at her school. Her academic research and consulting experience have led her to explore both the ways people hear, or don't hear, and the words people use to express different ways of hearing, as well as the social and emotional impact word choices can have.

It seems "deaf" need not mean "totally deaf", as some deaf people have hearing aids, but still use sign language. Some people with little or no hearing loss prefer to sign with each other. Member Brian Monson, for example, has hearing aids but signs fluently. His parents were deaf, and that's how he learned.

So, what do we call our particular kind of hearing? What is insulting, what is patronizing, and what is just plain confusing? Take "hearing impaired." Once a common term for the less-than-deaf condition, it is almost cringeworthy now. Even "hearing loss" draws objections from people who were born without hearing, so could never really "lose" it. Katie shares her own experience below.

Katie's story: the meaning of "deaf"

This identity journey may change over time. Growing up, I claimed I was "Deaf" because I was proud to be deaf and it signified that I was a member of the Deaf culture and the Deaf community. And I still am (proud and a member). However, over time, I have come to use "deaf" because it feels more appropriate and inclusive to me. The more I dive into Deaf studies, the less I felt comfortable using a "capital D" designation as I am comfortably bicultural and bilingual; I have hearing family members and friends that I communicate with verbally and in sign, I wear hearing aids, I have a cochlear implant myself (that I don't wear often). I have colleagues that feel differently and use "Deaf" and that is fine. There is no right or wrong label to use; it is only what you personally prefer and feel comfortable with.

In fact, in my doctoral dissertation I studied how deaf people learn to navigate the hearing world as well as defining hearing culture. I even got so tired of having the "Do we capitalize "Deaf" or write it in lowercase "deaf" conversation every time we sat down to publish something that I suggested we do a research study on D/deaf—and the answer was as clear as mud.

Deaf on the phone

The paper I published with colleagues in 2019 in Scientific Research recounts how an earlier researcher, James Woodward, found a man using American Sign Language and asked him how he identified his hearing. The man replied, " I am Deaf, but I can hear and speak through a phone.”

I am also firmly rejecting those who "police" the labels that people prefer to use. In general, I find most members of the Deaf communities to be accepting and respectful of a person's preferred labels but there are always a few folks with extra-strong opinions. I have had people insist that I must have gone to a Deaf school because of my ASL fluency. I have also had some insist that I am obviously "hearing-minded" because I wear hearing aids. Ah well, you can't please everyone.

Basically, we decided to adopt using "deaf" (lowercase) unless specifically referring to Deaf culture, Deaf community, Deaf schools, or a person's preferred naming conventions.

It's your choice

Which leads me to... a person's preferred naming convention. I often tell people, deaf or hard of hearing, that it is absolutely up to them what they prefer to be identified as. It is a personal decision—along the lines of one's preferred pronouns, if you ask me. I have a colleague, who, when I first met her, did not sign, had two cochlear implants, and was identified as being hard of hearing. I asked her how she preferred to be labeled, and she answered, "Well, I can hear, so I am hard of hearing."

I explained that the hard of hearing label could refer to audiological status, yes, but I also knew plenty of people who prefer to be labeled as "deaf" despite hearing quite well and technically being hard of hearing. I also have hard of hearing friends who have "worse" hearing levels than I do and they label themselves "hard of hearing" because they wear hearing aids and speak.

The terms have two layers: audiological status, or how the outside world perceives and labels us, and the identity level, which is how we perceive and label ourselves. Some choose the label "hard of hearing" to firmly attach themselves to the hearing world. But there are others who sign and have deaf friends and refer to themselves as "hard of hearing". Meanwhile, I have seen people who label themselves "deaf" even though they hear and speak quite well and don't interact with many deaf people.

But...be kind

In the commission's Early Hearing Detection and Intervention program, we have tried to steer away from terms that seem negative or imply a deficit. We might tell parents of a newborn "Your baby has been identified with hearing differences."

We use terms such as hearing differences, hearing levels, and hearing status, which are more positive and neutral, so as to reframe being deaf as just a difference in a human experience rather than a medical calamity. And we always respect what people prefer to use and try to educate people on outdated terms when possible. The term "hearing impaired" seems to have simply fallen out of favor and come to be considered derogatory. It's a bit sticky, however, because many blind people say "visually impaired" and that's their preference. I know deafblind individuals tend to prefer "deafblind/DeafBlind/low vision".

Paula's view: Context matters

As a writer, I want to avoid embarrassing or insulting people regardless of their characteristics. As Katie points out above, terms go in and out of fashion and it can be hard to keep up. I myself have been introduced as "my friend Paula, she's hearing impaired" and I admit it stung a little. But I've thoughtlessly used it in an HAH story or two.

Because I joined HLAA when I was new to hearing loss, I followed their use of "people with hearing loss." However, like many politically correct terms, it can get awkward in writing. Sometimes if I try to replace a single noun or adjective with a four-word phrase, I may lose some readers.

When I want to communicate in person but keep it simple, I say whatever I think will get the point across quickly. I've told people I'm "deaf-ish." 

I will say this: Next to my front door is a sign reading, Firefighters please note: In this house are two adults (one is deaf) and a black cat. I do not want to burn up while a firefighter tries to figure out what "identified as an individual with hearing differences" means. <>

How do you hear?

By Paula DeJohn

One evening this summer I was getting ready for bed when a succession of flashes lit the window. I waited for the thunder, but no sound came. I had removed my hearing aids, and in a panic concluded that I must be finally and truly deaf.

Soon after, another storm came up. This time the lightening streaked out of a glowing cloud, and my naked ears heard (and felt) the sharp crack. Ok, so I'm not that deaf!

Other people have their own versions of this story.

Marilyn Weinhouse, the Denver Chapter's secretary, was napping when her husband began vacuuming. "I didn't hear it; I never woke up," she recalls. Without her hearing aids, she can hear speech—as long as the other person is facing her, no more than three feet away. "I never leave the house without my hearing aids," she notes.

Sally Hodge, who has cochlear implants, recently was at a block party with her hearing neighbors. Though she is a good face-to-face lip reader, negotiating an outside gathering was a different story. "That's a very, very bad situation for me," she says.

Hard to explain

It's likely that most people with good hearing don't consider the nuances of hearing loss. "Hard of hearing" supposedly means Grandpa makes silly mistakes between "Thursday" and "thirsty". Deaf means total silence.

People find it hard to explain exactly how well they hear in ordinary life—there are charts showing the difference between jet engine sounds and falling leaves, but that doesn't tell the more subtle story. To complicate matters, hearing loss is rarely static; it changes over time, sometimes imperceptibly. Researchers have lately come out with a system that assigns a number to a given hearing level—see more details below.

Comparing notes

A group of chapter members met recently to compare ways they describe their own hearing.

Alan Stanley attributes his ruptured eardrum to his days serving in an Army reconnaissance unit (not officially confirmed). He still does not use hearing aids, but has in-ear amplifiers that help clarify speech. "I have no problem at all in a group of hearing people—unless they speak softly," he says.

Jessi Nelson was born with mild hearing loss, which worsened gradually. She received her first hearing aids at age 8. As an adult, she continued wearing them, until recently, in May 2023, she could not hear at all. An infection was diagnosed and treated, and a bit of hearing was restored, but hearing aids were no longer sufficient. Now Jessi wears one in her left ear—"so I can hear my own voice, and not talk too loud."

She has a captioning app on her cell phone, and a portable microphone which lets her plug into conversations and read the speech. Holding up her phone she says, "This is mainly how I communicate."

Barb Nguyen loves her cochlear implants, which she has had for 30 years. "I can hear my husband speaking from the next room, and when I'm walking, if someone speaks behind me," she says. She also depends on captions, for TV watching. "I don't pay attention to the sound, just the captions," she adds.

Dick and Miki Seeley are both members, but their hearing history differs. Miki used hearing aids long before Dick began having trouble hearing speech. "Especially kids," he recalls. "Children are very hard to hear." He rates his hearing as "moderate or above," and is able to watch the TV news without any aids.

Dave Mitchell has a family history of hearing loss. He got his first aids at age 42, and progressed to severe to profound levels. "Even with my hearing aids, I hear speech, but have trouble understanding," he explains. His Bluetooth connection allows him to hear on his  phone.

One trend he has noticed is that in a group of hearing people, such as a classroom, it is of little use to ask for accommodation. "If I ask someone to please speak up, it lasts about 30 seconds."

One area of agreement is the need to be extra careful and observant. More than a few of us have discovered they have walked away from a running water faucet.

A way to keep score

Scientists at Johns Hopkins Bloomberg School of Public Health have tried to address the inconsistency of hearing perceptions by assigning each of us a "hearing number" for each ear.

As they explain on the website hearingnumber.org,

Many of us know our height, weight, vision, and perhaps blood pressure. But what about our hearing? Our ability to hear is foundational to healthy aging, and hearing loss is strongly linked to adverse health outcomes, such as dementia and depression. Yet, there hasn’t been a consistent metric that allows us to understand and talk about our hearing function.

The Johns Hopkins Cochlear Center for Hearing and Public Health launched the Know Your Hearing Number campaign to introduce a common metric for hearing. The Hearing Number is the four-frequency pure tone average, or PTA4, and it reflects how loud speech typically must be for someone to hear it. The Hearing Number ranges from about 0 to 100 dB and can be directly applied to the broad categories that health organizations use to define levels of hearing loss. These categories include:

·       Mild is a Hearing Number of 20 to 34

·       Moderate is a Hearing Number of 34 to 49

·       Moderately severe is a Hearing Number of 50 to 64

·       Severe is a Hearing Number of 65 to 79

This public health campaign aims to create broad acceptance of the Hearing Number as a tool for understanding and communicating about hearing. Embracing this simple number is a step toward:

·       Improving the way people understand and talk about their own hearing.

·       Increasing conversations about hearing among patients and health care professionals, as well as among loved ones.

·       Destigmatizing hearing loss.

·       Empowering people to adopt communication strategies and hearing technologies that can improve their hearing and quality of life. <>

From the archives:

How deaf people learn to communicate

By Barbara Nguyen

In the past, our society has referred to people who were born without hearing as "deaf and dumb." "Dumb" means not being able to speak, but informally, it also means being stupid.

Deaf people are not mute because they do have a voice but are not always taught how to use it. As for being stupid, many people probably hold this belief because they cannot communicate with the deaf. But whose responsibility is this? Deaf people learn to communicate with each other through sign language.

There are two schools of thought in teaching the deaf. One is the belief that sign language should not be used at all. It teaches only lip reading and the use of a powerful hearing aid to communicate and teach the deaf to speak. It is possible to teach babies and after as long as 14 years teach them to hear and talk on the telephone.

Other schools teach sign language only and this is a faster way for deaf children to learn. But this group has more problems communicating with the hearing world.

People who become deaf in later years, like myself, have an advantage because they have learned to speak and know how letters should sound. This makes it easier to lip-read also. But no one can lip read 100% because so many sounds are not on the lips. Many are in the back of the mouth or in the throat and others look and sound the same on the lips.

Communication is more than speech

Being deaf is not only not being able to communicate. Because many of our mannerisms, conventions and thoughts are learned from peers, parents, teachers, and others, if one has never heard these things, they will not know these as well as a hearing person.

It can be very embarrassing to find out you have laughed or talked too loud in a store or at a party. Also, many words sound and look the same on the lips so a deaf person can completely misunderstand a whole sentence and reply about something that has nothing to do with what the other person was talking about. This happened to me when I was working my first job at a bank. The president of the bank said something to me at a party and I thought he said my dress was so pretty. After I said "Thank you. I got it to wear for Christmas," I realized he had actually said something about my aunt singing a solo in the choir.

I also find myself mispronouncing names and words (especially French words like souffle and quiche) because I have not heard how other people say them.

Now you can see why deaf people have often been labeled "dumb".

The deaf also have a small vocabulary because they must learn words from a book, like we learn a foreign language. It is difficult for most of them to try and read one paragraph. There are also some deaf  people with college educations, like myself, who have to take lower-paying jobs because they cannot communicate well enough with the public or other employees. Other reasons are companies lack confidence in deaf people and deaf people lose confidence in themselves.

But deaf people have done all they can to communicate with the hearing world by learning sign language. It is up to the hearing world to learn to communicate with the deaf. <>

Barb Nguyen was a founding member and first president of the HLAA Denver Chapter. This story appeared in the chapter newsletter, which she also edited in the late nineties.

In other news...

Lunch Bunch

The Lunch Bunch met August 19 at Panera's Restaurant in Denver. This group is open to HLAA members and friends who like to gather periodically to eat, drink and socialize. Watch for the next email invitation.

New vice president

Board member Dusty Jessen, AuD, was appointed acting vice president, pending approval by the full membership at the January 2024 meeting. Dusty is an audiologist and owner of Columbine Hearing Care in Littleton.

Bernie Steinberg

Former Denver Chapter president Bernie Steinberg has moved to an assisted living facility in Denver, with his wife Kathy. A retired attorney who specialized in mediation, Bernie advised and advocated for the rights of people with hearing loss. In 2013, while he was vice president, he pursued an Americans with Disabilities Act complaint with a local theater, Su Teatro, and convinced its board to install a loop system. He also led our campaign to tone down noisy environments.

Young hard of hearing group 

We are starting a social group for young people with hearing loss. The definition of "young" is flexible, but we are thinking around ages 20 - 40.  If you would like more information or want to join, contact Victoria Rivera victoria.rivera@colorado.edu

Next meeting

Saturday, Sept. 23, 1 pm-3 pm, Koelbel Library, 5955 S Holly St, Centennial, CO 80121

Call for speakers

We'd like to hear from you about what type of speakers and presentations you'd like for our future meetings.  Please send ideas of topics or specific people you would like to hear to hladenver@gmail.com.

HLAA national convention

Guests show off their masks at the Welcome Back Bash—A Taste of New Orleans. The off-site event took place at The Presbytère Museum in the French Quarter, amid exhibits on Hurricane Katrina and the history of Mardi Gras in New Orleans.