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Who’s the Expert with Hearing Loss?

When it comes to hearing loss, who’s the expert? 

Not long ago while teaching a class at a venue, I requested assistive listening for the attendees. The class was for Hard of Hearing people, giving them the opportunity to learn better communication strategies which also includes accommodations. Thirty minutes before the first class, I showed up to go over the assistive listening options. Present were 2 staff members and an accessibility person, who were all hearing. There was a load of devices on the table. There were 5 Roger Pens, a brand new FM unit for assistive listening and another dated, portable FM system. Together, we surveyed the devices on the table. 

They were proud of what they had but I already knew that they knew very little about any of it. They knew they had stuff for hearing loss but didn’t know how any of it worked. Luckily, I have some knowledge thanks to a series of presentations, my own curiosity to try technology and because I have a nice relationship with Listen Technologies. I have learned a lot from them over the years as they were the speakers of several presentations I attended. We are lucky here in Utah, as their headquarters is 20 minutes away. 

Grow the Know

It now looked like I’d be educating the staff. I said, “Phonak mics are awesome. They are great personal devices. However, they pair only with Phonak hearing aids. Most people won’t have Phonak hearing aids in which case, there needs to be receivers. Do you have receivers for the Pens?”

Blank stares, so I went on. “Even if you had the receivers, people would need to have a dedicated telecoil program in their hearing aids for the Pens to work. That means a trip to the audiologist to set up a program.” They looked at me like I spoke a foreign language. “We most likely won’t be able to use these as assistive listening, but I can use them for show and tell.”

Next we looked at the FM system. “This is an FM system unit that plugs into an A/V (audio/video) system. It will not work as a portable system.” There was a pause as they stared at me. The accessibility person said, “We just bought this. It’s brand new.” 

How can I say this gently?
Green background with green swirls. White font: Assistive Listening Symbol. Image: blue box with the white outline of an ear, a white diagonal line from bottom left to upper right through the ear. White text: Who's the expert? Black text: The installer? The accessibility officer? The user? How about going at it from a team perspective? White circular Hearing Loss LIVE! logo bottom middle and under it: @hearinglosslive

“Yes, I can tell it’s brand new. It’s a wonderful system and I have used it before. It is from Listen Technologies. Let me touch base with them and see if they can confirm if it’s for portable use or not.” I emailed Listen Tech with a picture of the unit and they emailed me back within 10 minutes. I was correct, it wouldn’t work as a portable system so I let the accessibility person know. “It will work really well with an A/V unit but it won’t work here.”

They stared at me in disbelief and informed me they would get me a microphone to plug into the FM unit for the next class. The next week they brought the FM unit back into the classroom and plugged a microphone in. It didn’t work, as I expected, but I let them explore the option. I also gave them an email to the appropriate Listen Tech person to learn how to use it. I really hope they put it to use elsewhere as it is a great system.

Checking the Box

Back to the first day before class… After the Listen Tech system,  we looked at the aged and well used portable FM system by another company. I have used this system before too but this was falling apart. Few of them worked as the battery doors wouldn’t stay on. A few were charged, or had a new battery, but only worked if the person held the door tightly closed. Hard pass. This is not a good introduction to assistive listening so I’ll share the symbol with them and suggest they use them while out. This is an example of checking the box, or ticking the box as they say across the ocean.

The experience left me feeling sympathetic toward people with hearing loss who don’t know assistive listening or accommodations. How often do people with hearing loss give up on getting accommodations? The Roger Pens prove some persisted in getting a device and I wondered how much work was it to get it? How many trips to the audiologist did it take and how many meetings with the accessibility crew? 

How could I, a person with hearing loss with knowledge and resources, teach the staff more? The accessibility person felt she knew more than me, she did not listen to me. She didn’t seem to want to learn more about the Pens and the FM system. This could have been an opportunity to learn more and help others with hearing loss. 

At least we requested CART/live captioning and had that available. This the accessibility person understood and she did an awesome job setting up several microphones around the room. This enabled the remote CART person to hear and capture all class participation. 

Another Box Checked Without Knowledge
A green background with various shades of green swirls. A vine with different Hearing Loss LIVE! logos as flowers; one white and circular, another as 3 green leaves, another is black circular and a tiny bright green one. Black font top middle says: Advocates grow the know. An outline of an ear with two lines behind it. Black font: Listen to them.

Another example was shared with me a few weeks ago by a woman who grew up with Hard of Hearing parents. She grew up with hearing loss, even though it wasn’t hers. She very much understands hard of hearing communication needs. A venue she frequents, got a new assistive listening system but failed to get neckloops. She informed them that the law requires a certain number of neckloops to be accessible for those with hearing aids/cochlear implants. The venue replied that the A/V company told them they met the basic ADA (Americans with Disabilities Act) requirements and wouldn’t budge. In other words, they checked the box and were satisfied. 

Immediate family members are often knowledgeable about ADA requirements and communication needs yet they get blown off as much as people with hearing loss. Julia is a hearing loss partner and she knows A LOT. I have a friend who has a son with hearing loss and she knows A LOT. Both are great advocates, along with the lady whose story is above. Family members (and friends)  can help when making decisions in regards to hearing loss. One thing I know is that all of them will also refer people to a person with hearing loss for questions and verification as well.

Diversity in Teamwork

The journey to wisdom in regards to hearing loss is arduous. Upon completion, those of us in this position know our stuff. We know what works and what doesn’t. We are the hearing loss leaders in our community. Seek us out, get our opinion. We have unique expertise. 

Wouldn’t it be wonderful if businesses and organizations contracted with people who have hearing loss on an “as needed” basis, such as the A/V team and the accessibility person? How about a once a year training contracted by the business or organization to improve communication outcomes and clear up misconceptions? There’s often new technology within that time span to share as well. Notice I said contract. People with disabilities have valuable information and expertise. Just like anyone, they can be paid for it. This is a great way to show diversity and foster inclusion. 

A Word on True Representation

Get true representation from a person with specific disability focus. Find a leader in the community who lives the life daily. Quite often the Deaf and Hard of Hearing communities are overlapped under “hearing impaired”.  While some of our needs are the same, many are quite different. There are some people who can jump back and forth between the communities. For the Deaf (capital D), true representation comes from someone within their community . They have a rich culture with their own language, American Sign Language (ASL), and different customs. They absolutely need representation from their own community. 

The same is true for hearing loss. Get true representation from someone who lives and speaks in the hearing world, with hearing loss. We don’t have a separate language, we continue to use spoken English, with certain modifications. We use some lipreading, some hearing, assistive listening and captions. If someone isn’t meeting you in hearing loss ways, you aren’t getting the best representation.

Learn more with our post on Defining the Hard of Hearing.

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Five Benefits of Diversity
  1. Creative problem solving. When working together, there’s more options on the table and more know-how. Together we can make better decisions before costly mistakes. 
  2. Skills and expertise can be shared for better understanding all the way around.
  3. With better understanding of hearing loss, you’ll get more engagement from the community. You’ll have more success with implementation. Your business, organization or agency, will gain a positive reputation for working with the Hard of Hearing.
  4. Because 20% of the population has some form of hearing loss, you will also better understand your employees. 
  5. Less risk for compliance issues. 
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Hearing Loss Strategy: Plan Ahead

Planning ahead is an important strategy for hearing loss, one we cover in our lipreading classes. It’s not just what we will wear to that event, it’s how we are going to hear. This strategy isn’t just for going out, it also works for certain chores when working with someone that requires too much distance for hearing loss communication. Planning ahead helps to reduce communication breakdowns. Notice we say “reduce”. Breakdowns happen from time to time. We are not always at our best no matter how experienced we are.

Planning Ahead at Home

Chelle: For example, trying to help install a ceiling fan with my husband last weekend. He had to go into the attic and he wanted to do it early in the morning. I couldn’t blame him, summer is here and it gets hot in the attic. However, this was before I finished my first cup of coffee. I am rarely at my best before 2 cups of coffee, let alone one. I’m not wearing my hearing aids at that time either because I like peaceful mornings. I could have put my hearing aids in before helping him but the morning caffeine hadn’t jump started my brain yet. 

Green and white background. Black font: Hearing Loss Strategy: Plan Ahead. Circular Hearing Loss LIVE! green logo of 3 leaves. Black font along the roof of an outline of the house that says: hearing obstacles. An outline of a man wearing mask near the roof inside the house with 3 questions marks above his head. An outline of a woman lower left with a dialog bubble above her saying: how can we do this differently next time?

There I was standing on the bed waiting to screw on two bolts, easy peasy!  He crawled into the attic wearing an N95 mask because insulation is not easy on the lungs. When the 2 bolts showed up, a side bracket was in the way on each side so I could not thread on the bolts. My hands got sweaty the more I tried. He’s yelling from the attic, through his mask. I barely hear his voice and can’t understand his words. I yell up at him that I’m trying and tell him the issue. It turns out, he can’t hear me very well either.  We abandon the bolts and he crawls back down into the house so we can discuss it face to face.

What might have helped: I could have put in my hearing aids but if he had a hard time hearing me, it was a far from ideal hearing situation no matter what. Also, I could have clipped my Roger On on him and put in my hearing aids. That might have helped me hear him but he had issues hearing me. Instead, we could have taken a moment to ask each other how to communicate if something goes wrong in case Murphy shows up. Murphy’s Law: Anything that can go wrong will go wrong. 


Driving is another good time to plan ahead, especially if the person with hearing loss is driving. Cars are always a challenging environment to hear in, even if we are the passengers. Mechanical hearing picks up mechanical and road noise all too well. Getting directions right while on the movie is especially hard. We all use lipreading to some degree and that’s difficult while driving not to mention unsafe. 

Are you going someplace new? Another strategy is to discuss the route before putting the car in drive. Who’s the navigator, the passenger? If we are with a passenger, they need to know that we need time to understand and process speech. Last minute directions do not typically go well for us. Give us time to process speech and then directions.  Without being able to lipread the passenger, right and light sound too much alike. 

Green and white background. Green circular Hearing Loss LIVE! logo upper left. Black front above an outline of car with two passengers: the car challenge. A dialog bubble coming from the drivers said: Thanks for planning the route with me beforehand.

Maybe using the passenger as the navigator is not the answer. Use your smartphone map instead which gives us a good visual. Sometimes the passenger wants to use their map and navigate. That puts us back in the scenario above. It’s best to use our own map and smartphone.  

A few more strategies for hearing in the car: Hand signals and gestures might work, as long as it’s not frantic. Try using your hearing aid remote companion mic. Be sure to adjust environmental/ambient noise to focus only on what’s coming from your mic, if  possible. You would find that feature in the mic and/or hearing aid app.

Phone Calls
Green and white background. Hearing Loss Strategy: Plan Ahead. A woman talking on the phone with a dialog bubble that says: I'm in a better space now so I'm calling you back.

Phone calls work best if you put a little planning into them too. Better communication happens when both people calling each other are in a quiet environment, even if captions are being used. Automatic speech recognition (ASR) hears better in quiet environments and so do live captioners. Strategies include turning off background noise like TVs and music. Don’t be double tasking, like cooking. Chopping veggies can be loud. Avoid calling from a car, even if it seems quiet to the hearing person. Being in a car with hearing loss is challenging, it’s even worse over the phone. Keep it simple and easy on the ears. 

Planning Ahead

Think about it. What can be done differently next time, in a similar situation, for a more successful outcome? Evaluate. Get feedback from the Hard of Hearing community. Get creative and make a plan. Then share what you did so others might learn from it too.

Note: If you don’t know about companion remote microphones, we have more information in this POST.

Accessibility Accommodations ASR (Automatic Speech Recognition) Assistive Listening Device Captioning CART (live captioning) Cochlear Implants Hard of Hearing Hearing Aids Hearing Loops & Telecoils Hearing Loss Hearing Technology Smartphones

When Hearing Loss Technology Goes Right

There are more options than ever for hearing loss thanks to technology. Having technology available gives us more options for living life than ever before. From hearing aids, to smartphones, assistive listening and remote CART/live captioning capabilities. We love technology.

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.

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.”