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Accessibility Accommodations Advocacy Assistive Listening Device Captioning CART (live captioning) Communication Access Hard of Hearing Hard of Hearing Defined Hearing Loops & Telecoils Hearing Loss Hearing Technology Lipreading Misconceptions Public Advocacy Self Advocacy

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.

Green background with green swirls. Quote in black font: Strength lies in differences, not similarities. Stephen Covey. Inclusion done right has diversity. When making decisions for hearing loss accommodations, have someone with hearing loss on your team. White circular Hearing Loss LIVE! logo to the left. @hearinglosslive
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. 
Categories
Cochlear Implants Connections Hard of Hearing Hearing Aids Hearing Loss Personal advocacy Sensory Loss Tribe

Pride in Hearing Loss?

Hearing loss is a huge challenge but we can share a list of ways to celebrate Disability Pride Month. See if you can celebrate a few wins with us. 

Background is large green triangles of various shades. Black font: Disability Pride Month. An image with of two people standing on either side of a wheelchair with smiles and arms raised. A man at the right next to them has glasses on and a hand in pocket.  Black font a quote by Chelle: "Without hearing loss, I never would have met the people I did or traveled to the places I've been."
Take Pride in Community

Getting to know others with hearing loss is invaluable! We basically have the same communication struggles and can help each other out with support. Not only that, but we can get validation on understanding certain people…because some people are hard to understand. They mumbled, they talked too fast and/or they didn’t look at you. No facial expressions. Yes, she/he was very easy to understand. We get to compare notes with each other! 

People with hearing loss have the biggest hearts. They want to help each other succeed. Join a local support group or join an online group to gain new strategies and learn more about technology. Subscribe to Hearing Loss LIVE!’s Let’s Talk Tuesday on our home page. We are an intimate group with so much knowledge between us. The next one is August 6th at 6:00 PM Mountain time. It’s online via Zoom and we have a real person providing captions to make sure it’s accessible. 

Hearing Aid Privilege
Background is large green triangles of various shades. Black font: Hearing Aid Privilege. Image of blue hearing aids to the left. We can shop in peace with a grocery cart underneath. Musical notes, we can use Bluetooth to tune into music without anyone knowing. Z's floating up, we can turn off our hearing at night.

Hearing aid privilege because when it’s a noisy environment, we have the choice to turn it down or off! Chelle enjoys a peaceful shopping experience while at the grocery store. She also totally appreciates the Bluetooth feature because she turns on music, blocking out the environment. This also happens to improve her mood while blocking not so friendly environmental sounds. With the ambient noise slide bar in her hearing aid app, she can adjust her hearing aids to hear some music and some environment too.

We also tend to sleep better because we take our hearing devices out/off. Did you hear the wind rattling things all night long? No, I didn’t hear a thing. Did you hear the rooster crowing at dawn? I did not. Did you hear the large animal sniffing at the tent? Nope. I only woke up because your arms were flailing, beating on the tent walls to scare it away. Hearing friends and family sometimes wish they could turn off their hearing at times too.

Creativity

We are creative people. Sometimes this is because we have to be creative to get around hearing loss obstacles. We have to think outside the box to get what we need. At times this is an unconscious strategy but once we realize what we are doing, we can maximize it. This creativity overlaps into other areas of our lives as well. How many of you are writers, painters, crafters? 

Great Listeners

What? That sounds odd, people with hearing loss are great listeners? You bet. If you’re following the 3 Golden Rules – getting our attention first, facing us and being within 6 feet – we are great listeners. We have to focus on you. Our minds can’t wander so you have our undivided attention. We are listening only and not thinking of anything else. Of course, we have to be up front about not hearing something and hopefully you patiently repeat. 

Hearing Loss is Not Who We Are

Above all, remember hearing loss is not who we are, it’s how we communicate. It’s a part of us but it’s not all of who we are. There’s so much to each and everyone of us. Allow yourself a little pride this month for how far you’ve come and what you’ve accomplished so far. It’s a journey! If you’re not feeling it, we get it. Hang in there with us and we’ll do our best to help you feel more confident and comfortable with hearing loss.  

The Struggle
Background is large green triangles of various shades. 3 Green leaves upper left. Black font: Disability Pride Month, July. Image of two hands holding a heart. Black font: Hearing Loss hits hard when it's sudden and when it drops into the severe stage. We know it's a journey and we see you where you are at. Hang in there and keep at it.

The struggle with hearing loss is real. Trying to figure out how to be in this world without hearing is a huge challenge. If you are deep in the struggle right now, we do not expect you to feel pride. Hearing loss is isolating and we lose our connection to voices, music, environmental cues and more. It’s a journey. Hearing Loss LIVE! recognizes you where you are at right now. Stay with us for support where and when you need it.

Learn more about Disability Pride Month:
  • Here’s a history of Disability Pride Month here.
  • Learn about the Disability Flag here.
Categories
Cochlear Implants Communication Access Communication Practices Communication with Family Hard of Hearing Hearing Aids Hearing Loss Lipreading Misconceptions Personal advocacy Self Advocacy

Conversation with Hearing Loss

Understanding a conversation with hearing loss is no easy task. It takes solid focus involving several strategies and self advocacy. Conversation is NOT casual for those with hearing loss. It is a process with our distorted hearing (read Sensorineural Hearing Loss Visuals HERE). This means we hear your voice but we can’t understand all of the words (see Hearing VS Understanding HERE). Even if we wear hearing devices, many people have unrealistic expectations (read more on that HERE) of what our devices can and can’t do. We all use lipreading to some degree but again, there are times when lipreading doesn’t work either (see this POST). 

With hearing loss, we won’t understand the message if we aren’t focused on you. If you don’t have our attention before speaking, it’s a guaranteed repeat. We have to clear our mind to be ready to receive your message. When we are focused on you, we then use the visual aspects of communication to fill in gaps. On top of that, we are using logic and what we know of the topic to fill in other holes.  

Conversation runs smoother when the speaker is focused and not multitasking as well.

The following story shows you what processing conversation looks like with hearing loss. It’s how we sort through what we can and can’t hear, while trying to find the topic.

The Hearing Loss Process:

The hearing wife is at the kitchen sink, dishes clanking while rinsing and setting them in the drainer. She says something, back turned to the Hard of Hearing (HoH) husband who is sitting at the table looking at his phone. The HoH husband hears the voice but doesn’t understand a single word. The noisy dishes override speech. He has no choice but to ask for a full repeat at that point. 

Green background that fades to blue. Black font: Moving targets are hard for people with hearing loss.
Image of an icon running.
Black font: WE can't use the visual components of communication.

His wife turns around to face him, sort of, but continues moving around the kitchen as she talks. This is a moving target which cuts down on lipreading abilities and visual cues. The husband asks her to stop, face him and say it again.

Maybe the noise and moving target rattled him a little. Even with her facing him, he cannot grasp the topic of the conversation which is key to lipreading strategies. This is a new conversation. Without knowing the topic, he has to pull random ideas of what he knows about her likes/dislikes and her typical conversation topics. He sees a word, he thinks, and takes a stab at the topic.

“Are you talking about your plants?” 

Plants is the word he thought he saw. She recently put her garden in so plants have been a big topic lately. He asked a specific question to gain clarity on the topic. If he can just figure out what the topic is, everything else tends to fall in place. 

“No, I’m talking about hiking to Lake Blanche.” 
Green background that fades to blue.
Black font: With hearing loss, we play  a lot with; it looks like, it sounds like, here's what I know. 
There's a hand drawn image of an eye, an ear with a hearing aid in it then a magnifying glass with a questions mark in it.

Now he has focus on the topic with the extra information she provided. It’s no longer random and it’s easier to follow the conversation. She slowed down with a simple, direct statement. Now he can fill the gaps easier with what he knows of the hike and the lake.  

Look Like, Sounds Like

‘Blanche’ and ‘plants’ look a lot alike on the lips. That is why hearing aids alone don’t always help, especially in background noise. Lipreading isn’t exact either. Understanding conversation with a hearing loss is a combination of strategies.

Learning better communication practices on both sides is a must to smooth out those conversations. Reduce background noise and movement, then follow the 3 Golden Rules

Look for our online, LIVE, lipreading classes which start again in September. We offer a ‘Buy One, Get One Free’ registration. Bring your partner because when you learn together, you grow the know for better communication for you both. We have two of the classes in video format if you want to start now. 

Get to know us through our short videos on YouTube HERE. We talk about about communication strategies for those with hearing loss.

Categories
Advocacy Community Members Connections Hard of Hearing Hearing Loss Hearing Loss Conventions Tribe

Build Your Hearing Loss Social Support Network

Having a support network of friends is crucial for resilience during tough times, as in friends with hearing loss and others within the community. We all have our best buds for support but having friends with hearing loss gives us instant empathy. Having connections in the industry gives us insight and valuable resources. Many parents of kids with hearing loss are fierce advocates and also excellent sources of support. 

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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.