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.

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.

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

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.  
Accommodations ASR (Automatic Speech Recognition) Communication Practices Community Members Connections Hard of Hearing Hearing Loss

Toastmasters with Harry Wolfe

Audible Talkers is a hearing loss friendly Toastmasters group started by Harry Wolfe.  It’s based in Arizona but because meetings are online via Zoom, anyone from anywhere can join. (Several members have been from different countries.) Chelle was invited to attend an online meeting during the pandemic by a mutual friend who also has hearing loss. By joining this group, Chelle improved her speaking skills and made a valuable connection with the hearing loss community in Arizona. She appreciates Harry’s efforts to make the club accessible to those of us with hearing loss. He also advocates to help Toastmaster clubs to become more hearing loss aware. Today, we introduce you to Harry Wolfe.

Zoom gallery view with 14 Audible Talkers Toastmasters members present. everyone is smiling. Several members have hearing loss in this Toastmasters group.
Audible Talkers Toastmasters first meeting online.
Accessibility Accommodations ASR (Automatic Speech Recognition) Cochlear Implants Communication Access Hard of Hearing Hearing Aids Hearing Loss Hearing Technology

Smartphone Built-in Accessibility for Hearing Loss

Smartphones, both iPhone and Android operating systems, have come a long way in accessibility for those with hearing loss. There’s several great, built-in features on each phone with a variety of apps to make life easier. This post is only for quick reference. There are a few explanations and a link at the end of the sections to explore the features further.

*Note: Some features vary due to having an older phone, how often you update or the company you use.

Accommodations Advocacy ASR (Automatic Speech Recognition) Captioning CART (live captioning) Communication Practices Hard of Hearing Hearing Loss

Hearing Loss, What Did We Learn in 2023?

Every month when we close out a topic at Hearing Loss LIVE!, we ask ourselves – what did we learn? Usually, we’ve learned at least a few things, if not more. The discussions that pop up in our classes and workshops are fabulous! It can be someone new to the hearing loss discussion who spins us a new perspective. Maybe it’s someone with years of hearing loss experience who shared an offbeat tip or different strategy. The learning never stops and we all learn from each other. 

This is a good end of the year question for us at Hearing Loss LIVE!  What did we learn in 2023?