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Advocacy Cochlear Implants Communication Practices Hard of Hearing Hearing Aids Hearing Loss Hearing Technology Lipreading Mental Health & Hearing Loss Personal advocacy

Imposter Syndrome with Hearing Loss

Do people with hearing loss feel imposter syndrome? We do but before we get into that, let’s look at the definition for imposter syndrome. The Merriam-Webster’s Dictionary says it is a condition characterized by persistent doubt concerning one’s abilities or accomplishments. It is accompanied by the fear of being exposed as a fraud despite evidence of one’s ongoing success. 

Imposter syndrome fits in with our theme of the month, Hearing Loss & Identity Crisis. Though distinct issues, they often overlap. While we are figuring out who we are with hearing loss, we experience self doubt and seriously doubt what we can achieve. We feel like half the person we were because we can’t communicate like we used to. 

How does imposter syndrome manifest in the lives of people with hearing loss?

Sensorineural Hearing Loss Issues
Dark green and black background. 
White text: Am I hearing or hard of hearing? It's so confusing!
Being unsure of our position can create imposter syndrome.
Picture: white outline of an ear tilted to the lower left corner. Three lines coming out from behind the ear, then several swirled lines going out from there.
circular hearing loss live white logo of 3 leaves

Sensorineural hearing loss creates distorted hearing. We hear certain things well and other things not so well. We hear a lot of noise so how does that equal hearing loss? Hearing the garbage truck rolling down the street is no problem, however, hearing birds and crickets chirping are out. No problem, right? 

Except this affects certain sounds in speech. With a mild high frequency hearing loss, we start having troubles hearing the speech sounds for F, S and TH.  (Take a look at our Sensorineural Visuals HERE to understand this better.) There’s gaps in certain words, especially with higher pitched voices like those of children. 

Are we hearing or hard of hearing? We can say “hearing” because we heard that voice from the other room. Saying we are Hard of Hearing doesn’t fit when we can hear that airplane flying overhead, does it? But, understanding is a whole different thing. Where does that leave us? 

Feeling confused. Doubting ourselves which reduces our confidence. We are caught between hearing and understanding, another topic we explored earlier this year, read HERE. Saying that we have hearing loss makes us feel like an imposter because the typical understanding of hearing loss means a reduction of hearing on all frequencies, a common misconception. Saying we are hearing doesn’t fit either because we are obviously missing certain cues in life. Either way, we feel fake.

Hearing Devices

When hearing loss hits a certain point, we look into hearing devices. This will fix all the issues, we think. The general population tends to believe that our hearing devices, hearing aids and cochlear implants, restore our hearing. This is another huge misconception, even with those closest to us.

Most of the time we don’t learn the limits of hearing devices when we get them. Because of this, we can’t correct unrealistic expectations. When we get our hearing devices, we run into aspects of ableism. We hear things like, “You have selective hearing.” Hearing aids cost somewhere between $3,000 and  $7,000 dollars and we still have trouble understanding what people are saying. “What is wrong with me,” we might ask ourselves again, feeling like an imposter while wearing hearing aids/cochlear implants. 

Dark green and black background.
White text: Hearing aids and cochlear implants do NOT (word NOT in yellow) fix hearing loss. They help but they are not called "hearing miracles" for a reason.
These unrealistic expectations affect confidence and increase self doubt. This contributes to imposter syndrome.
Picture: An outlined figure scratching his head. A dialog bubble that says, "What's wrong with me?"

There can be years of this before we realize it isn’t our fault as hearing devices have limits. Hearing Loss LIVE! talks about these limits all the time. If you’re new, here’s a few quick tips:

  1. Hearing aids and cochlear implants work best within 6 feet.
  2. Though better at filtering out background noise than ever before, it is still an issue. Background noise still overrides speech.
  3. Acoustics affect hearing devices. Mechanical hearing has a hard time processing out reverberation. The harsher the environment (hard surfaces vs soft), the harder it will be to hear.

At some point, we learn from a peer, a support group or an article like this, that hearing devices help but they don’t restore natural hearing abilities.

Lipreading

Lipreading has several misconceptions and unrealistic expectations. The name ‘lipreading’ in and of itself is misleading. Lipreading is not all about the lip shapes, it’s only one of the tools we use for communication. It needs a whole new name. The term ‘speechreading’ doesn’t get it right either because we use logic, body language and more.

We all use lipreading strategies to some degree, unconsciously and out of necessity. If they face us and are within 6 feet, we all hear better. Yet, we are afraid to say we “lipread” because of unrealistic expectations that surround it. There are a few excellent lipreaders out there but most of us hit the average mark of 30% of what is seen. 

Saying, “I lipread” can give us a huge amount of imposter syndrome! Especially when people shut off their voice and use utter nonsense (ableism again). Or when they turn off their voice and use their mouth with exaggerated movements. (Come on people, that’s not natural!)

One way to combat this and restore confidence (achievement) is to say, “I use lipreading strategies with my remaining hearing.” Just so you know, here’s a realistic look at lipreading:

  • It’s not catching every word, it’s catching every 3rd or 4th word. 
  • We tend to recognize common word shapes/patterns that we see all the time. 
  • We fill in holes, within words and often whole words, with context, logic and guesswork. 

There are several more strategies we use. To learn more about realistic lipreading, you can take our classes. We have four classes and each class builds on the other. Strategies are reinforced throughout each class. Two classes in video format to watch as often as you want, when you want. 

Dark green and black background.
White text: Kick imposter syndrome to the curb by learning more about hearing loss, technology and accommodations.
White circular hearing loss live logo of 3 leaves.
@hearinglosslive

Our classes give you the information you need to help combat imposter syndrome and  ableism. Find out who you are with hearing loss by attending our free monthly workshops, reading our blogs and listening to our podcasts. Educate yourself. Build your hearing loss confidence and kick imposter syndrome to the curb by educating others.

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Accommodations Community Members Connections Education Hard of Hearing Hearing Loss Sensory Loss Tribe Vocational Rehabilitation Services

The New Norm with Hearing Loss

This new norm with hearing loss can and often leads to an identity crisis. Who am I now that I have a hearing loss? What happened to all my skills? Will I ever be the same? How do I find a path back to my level of skills prior to hearing loss? Can I even do that? 

What happens if one person didn’t understand the communication error? A whole cadre of mis-communication can happen very quickly and errors can result in some haunting experiences. These experiences become the new norm. 

Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

The New Norm with Hearing Loss themed meme:
Picture: Black background with green flames along the left side. The 3 leaf logo of Hearing Loss LIVE! cupped in a flame. A picture of stairs leading up to a light with lots of vegetation on the side walls.
Green text: Rediscovering Who I am with hearing loss. 
@hearinglosslive
Moving Forward

These questions become paramount in rediscovering who I was with hearing loss. The path is NOT back but forward. What are the skills I need to communicate now with hearing loss? How do I find those skills? Am I capable of using those skills? 

All of these questions lead to – “Who am I now?” The obvious answer to most people is – I was the same person as before hearing loss. That isn’t quite true. With hearing loss I lost receptive language, now I needed new techniques to become proficient at conversations again. How do I do that?

Communication is how we project identification of self.

 How does that change the understanding of ourselves? I no longer knew who I was or even how to communicate with others. It becomes a quest for understanding of loss and the effects it has on  communication. A search for new techniques and receptive language. I became so discouraged that I was enmeshed in anxiety and depression. 

A new identity develops during this time period. An identity with hearing loss and all of the consequences of not having receptive language. (The younger the person is when hearing loss occurs; the easier the adjustment. They are still exploring their own identities. Hearing loss is who they are already, it’s incorporated into their identity.)  For those who have already established their identity, it becomes a major life crisis.

The path is not easy. 

Some try on the identity of culturally Deaf, but that doesn’t fit a person who is English based in communication. They can feel ostracized by the very community they are trying to identify with. This identity crisis becomes worse when some individuals try to learn ASL and are unable to achieve proficiency for communication. This effort to fit in is another failure which can cause more confusion.  I tried all of these strategies:

  •  Private tutoring for ASL 
  •  Deaf organizations for assistance but was told they are only for Deaf, not HOH/deaf. 
  • The audiologist – they said they did not get paid for rehabilitation so they were not able to help me. 
  • HOH agency and they did not have programs for teaching me how to live with no receptive language. 
  • Classes for ASL, even graduate level ASL classes did not give me fluency. It should be noted that fluency in a foreign language is almost always achieved in childhood, not adulthood and not with classroom education.
  • Psycho-therapy. I was sent to a specialist for the “Deaf”; not the hard of hearing.  There were many mis-cues due to my mis-understanding vocabulary.  I heard the therapist say I was missing “intrinsic learning”.  For years I thought she was inadequate to the task only to learn I heard it wrong. (She said incidental learning.) I did not check my understanding with the therapist. Of course I THOUGHT I understood. 

I lost years in my struggles to understand with missing sounds.

In the most unlikely place, I found answers.

It was my vocational rehabilitation counselor who began teaching me how to live with hearing loss. It wasn’t an easy transition.  With no structured program it was a struggle to teach me how to communicate effectively.  Three years later with hours of teaching and technology I can now communicate.

Black background green flames along the bottom of the meme. A green hand drawn heart at the top outlined twice. 
Green text: People with hearing loss have big hearts. We want to see each other succeed. Find your people. 
@hearinglosslive

Two years ago, I met Chelle Wyatt, HOH Advocate, in person thanks to a mutual friend. That’s when I learned my confusion was normal. Here was someone who was HOH and had gone through much of what I had to endure. She  learned to thrive with hearing loss. I wanted to thrive so I began the journey to reclaim my identity and my life. Next, I took the Hearing Loss LIVE! lipreading classes. On top of that, I found a therapist who was willing to learn how to communicate with someone who has hearing loss – don’t look away, don’t say hmmmmmmm, correct any miscommunication immediately and stay within 3 feet of me. (See the 3 Golden Rules for more information.)


Re-finding our true selves

Compensation skills can be learned. Communication skills are learned skills, we can learn them! Communication is just one way we identify ourselves. It might be how we are judged by society but it is NOT who we are. I knew my skills were still alive, but I could not find the pathway to connect them from brain to conversation. Receptive and expressive language are directly related. If I can’t understand the conversation, I can not express coherent  ideas. I have knowledge, but no way to connect what I know with what I can’t hear.  

The New Norm

There wasn’t a program for rehabilitation for HOH. There were no agencies to teach me how to communicate again. I found my tribe. Chelle and Julia taught me how to do “workarounds.”  They accepted me as a HOH person and taught me skills to survive.  Jack Clevenger, another HoH advocate, supported me in my clumsy attempts to communicate. (He introduced me to Chelle one day.) A priest and I spent hundreds of hours explaining concepts and strategies for communication.

Black background. Green flames along the bottom. 
Green text: Hearing loss is not who I am. It's how I communicate.
@hearingloss live
3 leaf logo in lower left corner.

My VR counselor helped me find solutions and technology to use to communicate. She fought against the dominant paradigm for  me.  Dr. Ingrid McBride, Audiologist, found solutions to my assistive technology (AT) needs and made sure the accommodations were correct for my hearing loss. She assessed my hearing loss, ordered the right hearing aids and adjusted them so I was immediately successful with them. She and I began teaching skills to HOH.

With the help of an supportive friend, I learned how to be by myself at night with hearing loss. He kept me company the first few nights and helped settle my fears ensuring me I was safe with current technology. (Video calls are great for people with hearing loss.) Chelle, Julia, my vocational rehabilitation counselor, audiologist and friends, I learned to communicate again. With new strategies and technology, I was able to access my knowledge and use it.

Chelle and I just gave a workshop to NASW-AZ, a major achievement for me! I went from no receptive language, depressed, isolated, and no identity to being able to interact with an audience of many people.  

We can be who we  are – sometimes it just takes a village!

You won’t want to miss Hearing Loss LIVE!’s upcoming podcast with Gloria Pelletier. In this podcast, we discuss how it happens and how to proceed through this kind of identity crisis. It comes out April 11th on our YouTube channel and other podcast streaming platforms. It’s available for free for one week, then we mark it private for our Workbook Packages. You can find transcripts on our BuzzSprout site.

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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.

Categories
Accommodations Advocacy Captioning Cochlear Implants Hard of Hearing Hearing Aids Hearing Loss Misconceptions Self Advocacy Shame/Stigma/Denial

Ableism and Hearing Loss

Let’s talk about ableism and hearing loss. We face ableist situations and/or remarks weekly. Just so we’re clear, we’ll define ableism before we show how it applies to people with hearing loss.

Definition of ableism via Access Living: “Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.”

We constantly battle superficial knowledge about hearing loss. A few examples are: Hearing aids and cochlear implants fix the loss 100%. All people with hearing loss know American Sign Language (ASL); “We can give you an ASL interpreter but not CART/live captioning.” The truth is, 97% of us with hearing loss don’t know ASL. Our access to spoken language is captions. (For more Misconceptions, read our post from February of 2022 HERE.) Knowledge of hearing loss communication needs are so minimal we might encounter ableism several times a week.

That often?
Yellow and green blob with splatters out. 
Text: Turn up your hearing aid!
Ableism with hearing loss.
Picture of a woman with long brown hair yelling into a megaphone that's point up to the "turn up your hearing aid!"

Yes that often. Here are a few comments you may have heard lately…

  • Turn up your hearing aids!
  • Are your ears on?
  • Are you deaf or what? 
  • Pay attention!
  • You have selective hearing.
  • You need to put more effort into listening.
  • Why are you taking so long to answer me?

These types of questions and statements make us feel inadequate. “My hearing aids are in and I still couldn’t understand you.” Then thinking, “There must be something wrong with me.” The statements listed above come from people who have unrealistic expectations and no knowledge of hearing loss needs. They expect hearing miracles.

More examples of ableism…

Being asked to go to a movie (special showing) that isn’t captioned. But…we should go because we can hear some words and follow the action. How about people trying to talk around us to the hearing person because it seems easier? We’ve heard stories from others who said their significant other would say, “Don’t talk to her, she can’t hear. Talk to me.” 

green blobs and splatters.
Text: Don't talk to her. She's deaf. Talk to me.
Ableism with hearing loss.
Pictures of two men talking, walking away from a lady with her hands out.

Another pet peeve; people who hold their hand to their ear and say either “Huh” or “What” several times after telling them we have hearing loss. This also happens to people who work in the hearing loss field, by the way. Have you seen the social media comments under audiologist sponsored posts?

What about wanting to watch a video and it doesn’t have captions? There’s a podcast but it doesn’t have a transcript. Going to the movies and the caption device isn’t functioning. Going to a play with a friend to see a play and the FM system receiver isn’t working.  Another favorite: “You should learn ASL,” when we don’t have anyone willing to learn with us. How will that even help us communicate with them when they themselves do not know ASL? Or how about, “Go get a hearing aid,” when we can’t afford one. The message seems to be: “Fix your hearing loss so we don’t have to change our ways.”

This world favors the hearing.

We are very capable people given a few adjustments. But when things like this happen, we feel less than. We become a stereotype. When we don’t know ASL and we can’t hear, where are we? No man’s land. A vague space between the worlds. We don’t seem to fit in anywhere. 

It’s not that hard to accommodate hearing loss. Most of what we need to participate is a little understanding, better knowledge of assistive listening and/or captions. After that we’re all in!

Don’t Accept It

When ableism presents itself, take it as an opportunity to correct the misconceptions. Together, we can combat ableism with education. We can conquer unrealistic expectations.

Join Hearing Loss LIVE!’s monthly workshops to learn more about the limits of hearing devices, how to request captions and technology. Educate yourself so you can educate others. Start with a Hearing Loss LIVE! workbook in your area of need. We have several specific topics so you can choose the one that helps you most. (Each workbook comes with a private, captioned video and/or podcast.) Attend a Lipreading class because lipreading is all about advocating for yourself. Join a local hearing loss group. Find out if there’s an HLAA chapter near you, or an ALDA group. Invite a hearing partner to join you at these meetings. It will open up discussions about better communication practices. If nothing is near you, get in with the SayWhatClub, an online community. Join all 3 organizations to meet more people with hearing loss! The more of us in the know, the easier it will be for all of us. 

Stop Ableist Comments & Educate Now

By the way, you can counteract all the ableist comments listed above in the bullet points with the 3 Golden Rules. If you’re knowledgeable about hearing loss and hearing device limits, you can correct misconceptions. Changing a few small communication habits will go a long way, this definitely includes hearing people. They can change a few small habits as well. If you didn’t receive the spoken message, we are willing to bet they didn’t follow one, two or all 3 of the rules. 

We don’t need to be fixed (but we need to learn to manage it) and we don’t need to learn ASL. We need to be understood. People need to know hearing loss is no joke. It’s freaking hard… until we have that understanding. When people work with us, it all gets easier. Participation is easier. For them and for us.

I’ll leave you with one more example of hearing loss and ableism. Have you ever had anyone say:

green and yellow blobs and splatters.
Text: You talk well for a deaf person.
Ableism with hearing loss.
Hearing loss live black logo of 3 leaves
Picture of two men facing each other, one with 3 red question marks above his head.
  • “You talk well for a deaf person.” 
  • “You do all that by yourself, with hearing loss?”
  • “You’re inspiring.”
  • “You don’t look deaf.”

These too are ableist comments and make us feel, well, awkward. What does deaf look like? Losing hearing later in life doesn’t mean we lose speech. I’m not inspiring, I’m doing what I have to do to live my life. Here’s a TED talk video called, “I’m not your inspiration, thank you very much” by Stella Young.

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.