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Advocacy Cochlear Implants Communication Access Communication Practices deaf Hard of Hearing Hard of Hearing Defined Hearing Loss Hearing Loss LIVE! Talks Misconceptions Self Advocacy Sensory Loss Shame/Stigma/Denial Tribe

Hearing Loss as an Identity Crisis

When we think of hearing loss we don’t automatically think that we enter into an identity crisis.  For some, “The situation is very different for late-deafened adults. These individuals have developed a personality that does not incorporate hearing loss. They have jobs, families, and personalities and relate to those aspects of their lives as fixed. When hearing loss occurs, it is a very disorienting experience. Rapid losses are more disorienting than gradual losses. Late-deafened adults often report that their hearing loss robs them of an understanding of their identity and often initiates an identity crisis. They may manifest a “reactive” depression and/or anxiety in response to a typically external situation.”  The Psychology of Hearing Loss | The ASHA Leader

Black background. 
White text: Who am I now that I have hearing loss?
Picture: Bright green outline of person with short hair. Little bubble above and behind the person.
Green hearing loss live logo in the lower left corner. 
Green flames at the bottom, reaching higher on the right.
Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

When I had a large drop in my hearing, I no longer had receptive language. I was aware that something critical happened, I just didn’t know what. For many years, I stumbled around conversations without success. After each failure, I would retreat more into silence. Silence was my friend, my comfort.  It was also my enemy.  

The more I retreated, the more I lost parts of me until I no longer was actively involved in any social event. I had become lost to myself to the point that I would no longer communicate outside of my grandchildren. Conversations were so hurtful I did not engage anymore. 

For a social worker that is a tragedy. 

My whole life was communication. I spent years learning to communicate effectively with people and then lost my receptive language. Did this mean I could no longer be a therapist, a social worker, Mother, Grandmother, friend, advocate? My hearing loss held me hostage. Life as I knew it disappeared and it would never go back to the way it was. There were no programs to help me, there were no agencies to help me with rehabilitation, there was nothing. I felt lost inside myself with no way out.

What Happened?

Now I know that people with mild hearing loss lose the ability to hear certain sounds i.e. F, S, TH, birds chirping. (High frequency hearing loss-most common hearing Loss in America.) When I could no longer hear certain sounds they did not exist for me, except the consequences of not hearing them. 

Visual for a High Frequency Hearing Loss
3 separate boxes with text. Each box represents a different level of high frequency hearing loss.
The top box is severe and has several missing letters in each word.
The moderate high frequency hearing loss in the middle box shows  some missing letters in each word. The third box shows what a mild high frequency hearing loss looks like, missing the letters F, S and TH.
Underneath the boxes it says no hearing loss: When the pandemic started, it threw the hard of hearing off. It was upheaval. People with hearing loss had an extremely difficult time because of masks as it took the ability to lipread away.

(To see all sensorineural hearing loss visuals, go HERE.)

I didn’t know there were holes in words with a high frequency hearing loss. (This chart demonstrates how a person with high frequency hearing loss experiences sound.) Simply, I no longer experienced sound the same way that a hearing person does. If unaware of this dynamic, we compensate for the lost sounds unconsciously. The brain is trying to make sense of the sounds that it hears and fills in gaps of what it doesn’t hear.

Receptive language is:

“A foundational component of communication that refers to the ability to understand and process spoken or written language. It encompasses a variety of skills such as interpreting words, sentences, and non-verbal cues, such as body language and facial expressions.” The Power of Understanding: A Guide to Receptive Language in Early Childhood Education (readabilitytutor.com)

I was aware that something was wrong in the conversation because I was  not responding correctly to the cues or topic.The person talking to me was confused (we all pick up on body language), but they didn’t know what was wrong either. Now the hearing person wondered, “What happened?” The person with hearing loss may think: “I know I am not demented. I am competent. What is wrong with me? What am I missing in this conversation?”  

Mis-Communication

When this type of mis-communication happens several times a day, the person with hearing loss, who lost some receptive language, can no longer receive intended messages. Loss of identity is a normal result of these types of experiences. With a lack of understanding, hearing loss creates confusion. I experienced complete verbal failure.

How do I now exist with whatever is happening? Am I me anymore? If you happen to be older, the family may grab the most simplest answer – dementia; which my family did.  My children thought I had dementia because I did not remember conversations or events. 

If the hearing loss person does not seek the appropriate services this might be substantiated, because the real problem is hidden. I did not seek help, I didn’t even realize I needed help. Finally, I found Vocational Rehabilitation services when I couldn’t hear during a court case. When we have these experiences occur over and over, we become depressed trying to find stability in our lives. 

We no longer know who we are – identity crisis.

This ends part 1 of Hearing Loss as an Identity Crisis. Look for part 2 next week, The New Norm. Be sure to join us for our April 2, 2024 Let’s Talk Tuesday workshop at 6:00 PM Mountain time (adjust for your time zone). Have you already registered for a Let’s Talk Tuesday? You will get an email soon with the link. If you’re on our newsletter, you automatically receive the link. Not on either? Find the registration link for both on our home page HERE.

Learn more with Gloria Pelletier and Hearing Loss LIVE!

Use our Contact Us page if you would like to get in touch with Gloria.

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Advocacy Communication Access Hearing Loss Lipreading Lipreading Concepts Misconceptions Personal advocacy Self Advocacy

When Lipreading Doesn’t Work

Learning lipreading strategies and the visible lip shapes adds to our communication skills but it doesn’t always work. We’ll be honest; lipreading is not foolproof. There are conditions that go against lipreading which is why we lead the Hearing Loss LIVE! classes with Lipreading Concepts

In the Concepts class, we share the strategies that go with lipreading. Then, we teach people to evaluate the problems around communication and find the workaround. For those with hearing loss, these classes are a great way to level up for better communication outcomes. For those that have someone in their life who has a hearing loss, this class will help you too, giving you an understanding of the process. It teaches you how to set the stage for better communication, including how to become an advocate with your hearing loss partner. 

We all use lipreading to some degree.

We tend to forget how much visual information there is in communication; body language, facial expressions and gestures. Even hearing people will stare at mouths and faces more intently to find visual clues in noisy situations. We all recognize common words by the lip shape pattern (not the individual lip shapes so much). “Good morning” is a daily routine for many of us and something we can expect to see. We don’t have to hear “good morning” to recognize it. People with hearing loss navigate these simple routines like this on a daily basis. 

Lipreading Doesn’t Work on Bad “Hearing” Days
green background with green waves at the bottom. 
Text: Lipreading doesn't work when we are too tired to put it all together.
white hearing loss live logo of 3 leaves near the bottom right.
Text: @hearinglosslive.com

What if we had a bad night? Good lipreading depends on how tired we are. Lipreading has many working parts happening all at once. When we are tired, it’s harder to put two and two together. Brain power slows down. This is a good time to warn others, “This is going to be a bad hearing day.” Let them know your mind is mush and you need a quiet day, if possible.  

It also depends on if we are distracted. Does the other person have gum in their mouth? Are you following the blue piece of gum as it dances across their tongue and around their teeth? Yes, it’s that distracting. Noisy backgrounds can distract us from concentrating on lipreading/hearing/understanding. Is there a football game on TV while you’re chatting with someone else? That might pull away our attention too, especially if it’s our team. We can only do one thing at a time with hearing loss. Will it be football or listening/lipreading?

People Problems

Besides people chewing gum, lipreading varies person to person. Lipreading doesn’t work well if they don’t move their mouth. There are many mumblers out there! If they don’t move their mouth and articulate, it’s hard for us to find visible lip shapes and the pattern for common words. Some people might hold the corner of their mouth tight, like they have an imaginary cigarette there. Or a toothpick. Some people hold their hands over their mouth out of habit and others will bump the ends of their pens against their lips as they are thinking and talking. This makes it hard to lipread. (Hint: We can be proactive in our communication with them and ask them to lower their hands or their pen.)

Green background, green waves at the bottom. An outline of man in office attired, white eyes and big brown mustache. 
Text: Lipreading doesn't work with a mustache. Are there lips under that thing?
@hearinglosslive .com
white hearing loss live logo of 3 leaves right center.
Sorry guys, we know you love your mustache but it limits lipreading.

It’s also not our fault we can’t lipread when the person has a bushy mustache covering their upper lip and half their mouth. Lipreading includes tongue movement on and around the teeth. If all that is covered up by a lot of hair, bye-bye lipreading!

Another problem, people who minimize their facial expressions and body language. They are really hard to hear! If you don’t think so, ask another person with hearing loss for validation. Communication is visual and the less animated people are, the more we have to work. 

Lipreading Doesn’t Work When It’s Too Dark to Hear

Lighting makes a huge difference for lipreading/hearing. Some bars and restaurants like to dim the lighting to enhance the atmosphere. They think this is inviting but it can chase people with hearing loss off.  When it’s dark, there’s less visibility for facial microexpressions and lips/tongue/teeth placement. For better understanding, make sure the other person’s face is well lit.  

It’s Not Our Just ‘Our’ Hearing Loss

It takes two to communicate properly and it’s not always our fault we can’t ‘hear’. If the other person doesn’t do their part:

  • Move their hands
  • Spit out their gum
  • Articulate
  • Turn on the light

We can’t do our part. Our part involves a lot of focus with lipreading, watching body language and using our remaining hearing. Keep in mind, many people don’t know what they don’t know. We might have to educate others. (Do that in the nicest way possible.) Let them know what doesn’t work for you.

Do you want to double check what we are saying? Check out the WikiHow steps on lipreading HERE. Would you like to see Chelle & Julia in action? Watch this recorded video by the Peninsula HLAA Chapter in California. Chelle & Julia presented lipreading for them last November. 

Join one of our classes in April 2024. Two of our classes are also available in video format, if that suits your needs better. Here’s the LINK to learn more about our classes.

Learn More with Hearing Loss LIVE!

Here are a few other posts about lipreading:

Categories
Accessibility Accommodations Advocacy Assistive Listening Device Captioning Communication Access Hard of Hearing Hearing Loss Personal advocacy Public Advocacy

Going to the Movies with Hearing Loss

While our more experienced audience knows about accommodations at the movies, those new to hearing loss may not. Signage is usually not prominent nor do they advertise that assistive listening or caption devices are available. Most of the time, we find out peer to peer. 

Assistive Listening
Movies are a long standing family tradition. This is Chelle with her adult children waiting for a Star Wars movie to start.

Assistive listening has been available at movie theaters for many years. Chelle started using assistive listening in the late 90’s at her local theater. The large headphones helped her enough with the dialog that could watch movies without feeling like she lost too much. Her only issue was that it was an infrared system. She sat in a dark theater with a conspicuous red, glowing dot on the back of head. Talk about feeling signaled out! Her desire to hear was bigger than her embarrassment thank goodness. 

When hearing loss hits a certain point, assistive listening technology may not work well enough for watching movies. That’s when those with progressive hearing loss, and deafness, need captions. Chelle had a big drop in hearing in 2007 and assistive listening no longer gave her enough of the dialog. There was/is too much background noise, music and the actors are not always facing the screen so lipreading isn’t an option either. She stopped going to the movies for about 4-5 years because it was pure anguish not being able to understand the dialog. It was easier to wait for movies to come out on DVDs that had captions.

Foreign Films with Subtitles

With a severe hearing loss, even English speaking films sound foreign. Salt Lake City has a theater that features foreign films with subtitles. Chelle watched a few foreign films for the subtitles. The drawback here was that there would be no subtitles if the characters started speaking English. This experience left gaps in dialog as well.

CaptiViews
Text: CaptiView closed caption viewing system.
Image: red theater seats with the captiview in the cup holder. A closer image of the captiview display with captions.
Image is from Landmark Theaters.
Image is from Landmark Theaters https://www.landmarktheatres.com/httpswwwlandmarktheatrescomaccessibility-equipment/

It’s only been the last 12 – 14  years that CaptiViews became available. CaptiViews have an LED screen, a flexible arm which has an anchor that fits into the seat cup holders. Dialog and sound descriptions appear on the LED screen. Since Chelle was used to movies not being accessible to her, it took a few years to realize she could go to the theater whenever she wanted, sort of. There are frustrations with the CaptiView device.

This recent article by The Guardian (January 2024) I Miss Out on the Family Experience shares what it feels like when the CaptiView experience goes wrong. (Learn more about CaptiViews HERE.) There were many times Chelle had to go hunt down someone after the movie started because:

  • The CaptiView was programmed for the wrong movie. The captions did not match the movie.
  • The device wasn’t charged long enough and the battery gave out halfway through the movie.
  • The bendable arm was loose, making the CaptiView floppy. Once Chelle held the device up by hand throughout the entire movie because she didn’t want to miss anything.
  • It’s two different depths of vision; looking at the device to read captions and then adjusting vision to watch the screen. Back and forth, back and forth. Sometimes we miss the action while reading captions.

Every time she went to the theater for the first year or so of the devices, each time she wondered if it would work, or not. It was a 50/50 chance. Persistence paid off and eventually she had the staff/management ‘trained.’ Also, they got tired of giving her free tickets after missing too much of the movie. Not enough of us ask for the CaptiViews so they may not be well maintained. The more of us asking, the better it would be…but first we have to know about it!

Caption Glasses

Then came caption glasses at Regal Theaters. The glasses have a battery pack, with a wire leading up to the glasses. Captions could be adjusted through the battery pack to be bigger or brighter. No floppy arm to deal with! However, for those of us who wear glasses and hearing aids, it gets kind of heavy on the nose and ears.

Chelle wearing caption glasses over her glasses. A cord runs down from the glasses down her body. She is smiling. 
She has shoulder length brown hair with curls, she's smiling and wearing a purple shirt.
Caption Glasses at Regal Cinemas
Open Captions

Finally, at long last, open captions are catching on. In Utah, we are lucky in that the MegaPlex theaters offer several open captioned (OC) showings. With open captions, the captions are on theater screens, just like watching TV at home. Our eyes are in one place, on the screen. There’s no devices to pick up or return making the movie theater experience enjoyable again. 

At a movie theater in front of a movie poster. A man in a checkered mask, a boy smiling, a lady with a another boy in front of her and man standing off the right in a yellow jacket. There's a movie poster between the man on the right and the lady with a child. Two people in this picture have hearing loss.
Family togetherness, going to an open captioned movie.

Captions come available on all digital formatted films (most theaters have switched to the digital by now). It’s a matter of turning on the captions and MegaPlex does that for us. 

Navigating theater websites for accessibility can be tricky. As an example, the MegaPlex theaters say all movies have captions. This is true if you pick up the caption device. To find open captioned showings but we need to navigate their menu. To give you an idea, at the MegaPlex…

  • We choose the theater we want to go to.
  • Once at the particular theater site, we click on the “All Format Options” button.
  • Select “Open Captions” from the drop down menu. Then it shows which movies are captioned and when.
Chelle’s Experience

I’ve attended many open captioned movies. Never have I seen anyone walk out because of the captions. The screen is so big the captions don’t take over the screen. I’m fairly sure that even hearing people miss dialog with all the background noise, not to mention the *BOOM*BOOM* coming from the theater next door. 

Captions don’t just help the deaf and hard of hearing, they also help people with auditory processing disorder, English as a second language and they help kids learn to read. People with ADHD benefit from captions and so do those with autism and other disabilities. All 3 of my kids grew up with captions and continued to use captions when they moved out. Captions benefit everyone.

Learn More About Captioned Movie History
Learn More with Hearing Loss LIVE!
  • Meet our friend Maclain Drake. He makes music accessible and he also advocated with the local movie theaters for better accessibility.
  • Learn more about assistive listening with Listen Technologies. They manufacture assistive listening systems and provide a variety of systems. 
  • Live theater can have captioning as well. We talk to Vicki Turner who captions plays, music and more.  
Categories
Communication Access Communication Practices Communication with Family Connections Hard of Hearing Hearing Aids Hearing Loss Personal advocacy

3 Golden Rules

The 3 Golden Rules provide better communication outcomes for everyone with hearing loss. They improve communication if you have hearing aids, cochlear implants or no hearing devices. By following these simple rules, communication breakdowns would happen less often, hearing loss or no hearing loss. They make the difference between hearing and understanding.

A purple meme with a ring of gold that has leaves coming off it. White font. The 3 Golden Rules when talking to someone with hearing loss. Get their attention before speaking. Face them while talking. Be within 6 feet.

All 3 rules were considered a social grace but they have fallen by the wayside. We are distracted and multitasking. We are tired, hangry and have a lot on our plate these days. We could all learn to slow down and connect again, properly. The 3 Golden Rules require everyone to be present. With more intention, perhaps we will have less communication breakdowns in general.

For people who have hearing loss, these 3 rules are especially important. Let’s break them down from a hearing loss perspective.

Categories
Communication Access Hard of Hearing Hard of Hearing Defined Hearing Loss Lipreading

Lipreading “I Love You”

My earliest ‘lipreading’ moment came in elementary school when a kid ran up to me asking me to lipread him; it looked like “I love you”. I was startled with the idea of lipreading and the possible proclamation. He wanted me to guess. I was hesitant. I knew it had to be WRONG. He insisted so I said it, “I love you???” The kid laughed and said, “No! It was olive oil,” and he ran off. Ha ha ha, the joke’s on me!

green stripey background. 
Similar Visual Patterns:
I love you
Elephant shoes
olive juice
white hearing loss live logo with 3 leaves.

I love you. We see it all the time (hopefully). It’s easy to see on the lips, even for hearing kids, like I used to be. This proves that hearing people use lipreading to some degree also. For Valentine’s Day, I thought it would be fun to write about how “I love you” can look like different things on the lips.

There are more misinterpretations, I remembered from an unrelated internet search on something which led me to this discovery. “I love you” also looks similar to “elephant shoes”. Instead of the “olive oil/I love you” that I grew up with, there’s “olive juice” which looks closer to “I love you” than “olive oil”. 

Go ahead. Look in the mirror repeating all 3 phrases without voice. There’s not that much difference.