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Accessibility Accommodations Advocacy ASR (Automatic Speech Recognition) Captioning College Disability Resource Center Communication Access Communication Practices Education Hard of Hearing Hearing Loss Misconceptions Personal advocacy Public Advocacy Speech to Text Captions Vulnerability

Accommodations: This is Good Enough For You

Requesting appropriate accommodations can be a challenge, especially if the entity has already decided what’s good enough for you. Educating others is fairly easy, usually, once the communication need is explained. Once in a while, however, they aren’t open minded.  When they won’t go beyond their current rudimentary concept of an accommodation, it is frustrating and heartbreaking. 

For National Speech-Language-Hearing Month in May, we chose resilience as a topic. What a timely topic. Chelle was reminded how ugly the process of resilience can feel. It’s mind consuming and exhausting, but in the end worth it. When we stand up for ourselves and our rights as a human with hearing loss, we help ourselves and we help others who come after us.

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White font: Accommodations are a bridge.
Picture of a white bridge with two white outlines of people shaking hands in the middle. The Hearing Loss LIVE! logo is underneath, @hearinglosslive.
White font: There is diversity in hearing loss. IT's not your job to decide what is "good enough" for us if you don't walk in our shoes.
Resilience, What it Means

Chelle: The last two weeks have NOT been fun. Last December, I signed up for an online course, asking if captions were available for all videos and they assured me they were. When getting an education, I do not want to be doing a lot of educating from my end so I asked about that before buying the class. The first class was great, the second class was video after video without captions. It was a woman’s faceless voice narrating.

My hearing loss is severe and it happens to be profound in the high frequencies. That means women’s voices are hardest for me to hear, let alone understand. This is especially true when I don’t have a face to use lipreading skills with. I contacted the necessary people and asked about captions, letting them know I couldn’t do this without them. Then I reminded them I asked about this before buying the class. 

Using ASR

Three different people told me I could use Chrome’s ASR (automatic speech recognition software) in place of true captions. I said I’d try that but warned them that ASR can go wrong quite often and gave them a few examples. After 3 short videos, I thought I’d lose my mind. 

  • ASR would get behind in translating, then speed up so fast I couldn’t read it.
  • ASR also constantly changes the words in a sentence while it’s ‘hearing’ and figuring out what’s being said via context. (Kind of like hearing loss.)
  • Some words can’t be heard well due to lack of enunciation, or when words are combined with intonation to imply meaning. Example: dropping down in voice at the end of the sentence to imply emphasis or combining words with a little laugh. (Kind of like our hearing loss once again!)

While ASR has proven to be a great help to those of us with hearing loss, when the information really matters, it’s not enough. I gave them examples of what I was running into with ASR and told them I wasn’t able to retain the information when my brain is trying to make sense of where the ASR is going.

That’s when someone suggested I go through the proper channels to get accommodations. No problem, happy to do so. In the form I checked captions and transcripts. The contracted class said, “Sorry there are no transcripts or captions. Use Chrome’s ASR.” No, that’s not adequate and I shared my issues again.

Read the Summary Instead

They came back with; try a different browser and “Use the summary of information you can download from the front page of the class portal. That gives you most of the information from the videos.” A little later, they let me know they reviewed the Chrome captions and they found it good enough. 

This has to be a hearing person saying this. I know plenty of people with hearing loss who will say the same thing I did, it’s not adequate. Don’t get me wrong, I like ASR and use it in more casual settings. Since this is a class, and an important one for me, I do not want to leave the information up to chance. Nor did I feel confident that a ‘summary’ of the videos would suffice. My class was being reduced to a summary for 3 lessons.

Fighting Superficial Knowledge of Hearing Loss
Green crinkled paper background.
White font: When it's not going to work, stand firm for your rights to participate like anyone else.
Yellow font: Educate to the best of your ability.
White font: Enlist support and feedback from your HoH friendly community. 
White cursive font: Keep the scaled balanced.
Yellow image of scales; left side has a black Hearing Loss LIVE! logo and the right side has a white Hearing Loss LIVE! logo.
White font: We know, it's anything but fun. In the end, it's worth it for yourself and anyone comes after you. @hearinglosslive

No, this will not work. I explained that I represent the HoH (Hard of Hearing) community, there’s 48 million of us in America. I’m taking this class to upgrade my knowledge so I can better serve my community. What kind of cheerleader am I when I won’t stand up for the very thing I need for effective communication?

In thinking about the whole ordeal, I realized we are very much fighting superficial knowledge. Does the general public feel that ‘captioned videos’ are using web browser ASR? Do they know this is not a substitute for the real deal? Do they really think this accommodation fills the gap and is good enough? I have broken, distorted hearing but that does not make me less than!

Ableism!

Julia: We talked about ableism in March and here it is! I can’t help but wonder how many students who purchased this program were made to feel less than or received a bad grade and/or did not earn the certificate that came with the class because not all the material was not accessible? Or asked for a refund and dropped the course and went elsewhere?

Higher education needs to hold their contractors accountable for providing full access to the programs they offer. There was absolutely no reason for this program to not caption their videos other than down right laziness. This program’s hope is you just give in. Accept what you’re given while they pocket the money.

When faced with these types of situations, our resilience can look a couple different ways. One, we can dig in and fight it all the way to the end, which may include legal counsel. Two, we can get our money back and find a program that is better suited for our needs.

Do the Right Thing
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White font: Maybe one thing won't work out exactly. Get creative and find an appropriate workaround. Do not leave the Hard of Hearing person feeling like have to accept less than everyone else.
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@hearinglosslive

If you are an educator, don’t leave people out. If your course offers video classes and you don’t have time to caption them properly, offer an alternative to videos. Meet with them in a video meet. (Be sure to follow the 3 Golden Rules and have good lighting on your face in the video meeting.) Take time to email and make them feel welcome. Don’t just say it’s in the summary because at that point, you’re cheating them of the class material everyone else gets.  

We highly recommend captioning all videos. There’s different ways to go about this: Use Otter.ai for a basic transcript, that’s what Hearing Loss LIVE! uses. Rev also works. Upload the transcript to the video and take the time to correct the captions. ASR comes up with some off the wall things at times, like we’ve seen cuss words go in and more.  

Captions not only help people who are deaf and hard of hearing, they also help people with auditory processing disorder, English as a second language, ADHD, autism and more. You help a whole group of people when you have captions. Be inclusive.

Learn More!
  • Read our Personal Bill of Rights for the Hard of Hearing when you feel yourself wavering.
  • Title II of the Americans with Disabilities Act (ADA): “The ADA is meant to ensure that people with disabilities can fully participate in all aspects of civil life.” Title II applies to state/local programs. 
  • US Department of Education on Auxiliary Aids and Services for Post Secondary Students with Disabilities (website); higher education’s obligation.
  • Another resource from our friend Terri with the HLAA-Boulder Chapter. It also lists ways to get video content captioned.
Categories
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. 

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White text: Kick imposter syndrome to the curb by learning more about hearing loss, technology and accommodations.
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@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.

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?
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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:

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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.