Category: Personal advocacy

Personal advocacy is centered around getting family and friends to accommodate your communication needs.

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Communication Access Communication Practices Communication with Family Connections Hard of Hearing Hearing Loss Personal advocacy Self Advocacy Setting limits

Communication & Boundaries

Fence with a green vine crawling up the furthest left post, some grass at the base. The Hearing Loss LIVE logo which is 3 green leaves. Birds flying to foreground.

Communication is a chore in general. Add hearing loss and it’s 10 times more challenging. At Hearing Loss LIVE!, we say this all the time in regards to communication: We cannot do our part, if others don’t do their part. The following 3 guidelines are for our hearing communication partners – this is their part of the communication equation:

  1. Get the hard of hearing person’s attention first, before talking.
  2. Face that person while talking the whole time. The minute you turn away, sound starts to fade a bit. We need sound coming right to us. Also, seeing is hearing. We use facial expressions, body language and minor lipreading to help interpret the spoken language. 
  3. Be within 6 feet because the closer you are the better the sound quality. Again, seeing is hearing. 

Most of us hear enough to know people are talking, which makes hearing loss so darn confusing. We hear your voice but every conversation is a puzzle for us. Many of us are missing certain frequencies in speech, as in we don’t hear some  consonants. Part of the puzzle is filling in the consonant gaps with what we know of the topic. When you face us, the sound comes straight to us and we can use facial expressions and body language to fill more pieces of the puzzle. Number 1 and 2 are easier when you’re within 6 feet. 

Those 3 rules should be boundaries for all hard of hearing people. It doesn’t matter if we’re wearing hearing aids, cochlear implants or nothing. Those 3 rules are how we hear/understand.   The general population does not understand hearing loss so it’s up to us to let others know what works best for us. Be proactive. The 3 golden rules set your stage for better communication.

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“When we fail to set boundaries and hold people accountable, we feel used and mistreated.” Brene Brown

Making Your Boundaries Count

Julia: When we say we need to set boundaries, everyone squirms in their seats. They roll their eyes. There’s a few big sighs. Boundaries feel like a difficult thing but it’s okay to respect yourself. 

Actually, we use boundaries everyday, we just don’t realize it.

  • Do you use boundaries with co-workers?
  • How about your boundaries with your children?
  • What are your boundaries with your spouse?
  • Think about your extended family, what boundaries do you have with them?
  • Do these boundaries involve communication?
  • Have you changed boundaries based on the situation, the person, the event or in general, over time?

Sit down with these questions, with pen and paper, and think about it. 

Boundaries are a part of our everyday life. We don’t have the same boundaries for our five-year-old as we do when they hit their teenage years. Boundaries for your coworker, Jan, may look different than your coworker Jill.

How many times have you adapted, changed, and/or discussed communication boundaries that worked best for all parties? The hearing person and the one with hearing loss?

Talk to Your Hearing Partner About Communication

Why would you not want to sit down and figure out the role hearing loss plays in communication? To me, it only makes sense that hard of hearing communication boundaries need to be talked about, possibly changed and worked on. At home, with friends and at your place of work.

Work together. Having clear boundaries helps every member know what’s expected. In the future, you may need to change some communication boundaries because circumstances change. Other boundaries will stay the same. Don’t squirm in your seat and say you can’t do it because hearing loss has entered the equation. Y’all got this! Hearing partners join in, encourage growth and change. 

Personal Bill of Rights

Chelle: Edmund J Bourne created the Personal Bill of Rights in his Anxiety and Phobia Workbook. During a tough period in my life, I read this list of rights to myself often. It reminded me that I’m a valuable person and deserve some respect and happiness too.

Then I started thinking there should be a personal bill of rights for those with hearing loss too. ASHA (American Speech-Language-Hearing Association) has something similar on their website which was a good start, yet it needed some tweaking from the consumer perspective.  Here’s a few of the things we came up with…

  • I have the right to express my communication needs. 
  • I have the right to change my accommodations as needed.
  • I have the right to take hearing breaks.

(You can receive the full list by buying us one cup of coffee on our Buy Me a Coffee site.)

What Communication Boundaries Look Like

We often don’t want to be a bother to other people so we keep quiet on our communication needs. (I think we have our fair share of anxiety with communication.) Using the Personal Bill of Rights and our Personal Communication Bill of Rights might look like this:

  • If I’m at a friend’s house and they want me to watch a movie, or show, with them: “I need captions on. It’s the only way I can enjoy the movie also.” Then I show them how to turn them on and off. 
  • Assistive listening devices worked great for several years. However, when my hearing took another dive so my communication needs changed. I now need captions to enjoy events like live theater/the lecture/the class, so I can participate fully. Both accommodations are needed. I like to hear what I can and read captions too. 
  • When my husband wants to go out in the evening: “I am too tired to go out tonight. All my energy is spent. I need a hearing break so I’m going to stay home tonight. It’s ok with me if you go out tonight without me.”

Drawing my communication boundaries helps me at work, at home and while out in public. It’s not always easy and sometimes it takes a few tries to find what works best for me. Then I need to let others know. If I don’t let people know how best to talk to me, they are going to make assumptions. (See our blog on Collateral Damage.) With all the misconceptions out there, the assumptions are bound to be wrong. 

Green lawn in the foreground, a wood fence with blue sky. There ae green and yellow leaves hanging down from the top. Quote says: Boundaries are the distance at which I can love you and me simultaneously, by Prentiss Hemphill
Communication is a Basic Human Need

Gloria: Communication is a basic human need to connect.  We connect through our communication whether that be voice, text, captions, sign language, social media or email. We are establishing our identity, communicating our needs and sometimes wants.

Material Boundaries

When we are little,  playing with our toys, and when your sibling takes your toy you might say, “No!”  That is our start of knowing when to set boundaries.  It begins early in our lives.  I never told my children they had to share.  I asked them if they wanted to share.  Sometimes the answer was yes, sometimes it was no.  

Emotional Boundaries

Knowing ourselves and our needs first helps us to clearly communicate our choices. Respecting ourselves is essential for us to know what we need at any given time. Sometimes we have to set limits for many reasons and those limits can change due to fatigue, time, relationships, physical, and emotional needs. It is a way to  protect our energy, to survive in the turmoil of our everyday lives.  

When I was in China, my interpreter told me I was too nice and people would take advantage of me. I told her that wouldn’t happen because I knew myself, what I wanted to give and what I don’t want to give. I could be polite but recognize my own needs and respect them. No one can take from you what you don’t want to give. That was easy to do in a foreign environment. It’s not so easy to do within relationships of importance to us.

More Examples of Communication Boundaries

Communication boundaries in the HOH world look different but in reality it is the same concept. It is so easy to violate someone’s boundaries when you don’t understand their needs. First we have to know ourselves well enough to communicate that to others. Examples:

  • “I would love to have you come over today but I am exhausted from working late last night.  I would welcome lunch in a couple of days.” 
  • “It’s not funny when you make fun of me with the hand behind the ear gesture indicating hearing loss.” 
  • “ Be aware that I will take a little longer to communicate with you because I am determining if I heard you correctly and deciding how to respond.” 
  • “Yes, I communicate with sign language, CART and lipreading. I really want to understand.” 
  • In a large meeting: “Sir, I would appreciate it if you clip my microphone on your shirt so I can hear you.  I really want to understand your presentation.”  

These statements are an affirmation of our needs set as an expectation that they will be met. We require some accommodating on your part so I can understand what you are communicating. I respect you enough to find ways to communicate in a different manner that allows us to have a conversation. 

Different Strategies for Communication

In this manner we can set boundaries. In this way, communication can happen to establish relationships that will enrich us. The expectation is that our needs will be met because they are reasonable and not capricious. I am not making this up just to make you uncomfortable. They are valid requests. Just as you have needs and expectations that I will become aware of, we develop a relationship of kindness, caring and respect.  It’s always a give and take. I do not require more for my communication needs because I have hearing loss, I need “different” strategies in order to give my full attention to you. 

At times, I will be able to assess an individual’s personality by how accommodating they are to my communication needs. If a person is not able to adjust, I realize that he/she may have some difficulty with communication. I will communicate through email or text. I don’t judge their ability, I accommodate them. Just as I need some adjustments, so do they.  I respect them and myself at the same time.

Communication strategies and boundaries can be fun and exciting to everyone when applied with compassion and caring. Difference is not a negative, it is an opportunity to learn new skills and enrich your life.  Let’s have fun together.

Finding Your Own Boundaries

Communication boundaries will look a little different for everyone as we all have our preferences. We are all similar but also a little different. Explore. Experiment. Talk to others who have hearing loss. Then use what works for you and go with it…until your needs change or you find something else that works better. It’s up to us to figure out what works. If we don’t manage our hearing loss, someone else will. 

“Boundary setting helps you prioritize your needs over other people’s wants.” Lauren Kenson, health coach

Join our Let’s Talk Tuesday workshop.

We’re online and live March 7th at 6:00 PM Mountain time (adjust for your time zone). Join Julia, Gloria and Chelle to discuss Communication & Boundaries, we all learn from each other!

It’s online via Zoom with CART/live captions. There is no charge for the workshop. Register on our Events page.

Did you like this blog? See our other posts with Gloria:

Categories
Communication Access Hard of Hearing Hearing Aids Hearing Loss Hearing Technology Lipreading Personal advocacy Sensory Loss

Hearing Tests: Mixed Emotions

By Chelle Wyatt

In 30 plus years of wearing aids, I’ve never had hearing aids longer than 6 years until now. My current pair of aids are over 8 years old so this is a milestone. They might go 10 years with effort. There are minor glitches such as static on the right side until I wiggle the wire to my ear mold. They also don’t sync together, that means I have to change programs on both sides instead of one. Nothing huge but I’ve decided It’s time for new technology with more connectivity.

This involved getting a new hearing test. My last hearing test was over four years ago. I suspect there’s been some change but nothing huge. Hearing loss can be sneaky, dropping slowly therefore easily dismissed. It’s been about 15 years since I’ve had a significant drop in hearing and this too is another personal record. 

New Hearing Aids

Overall, I’m excited for the opportunity to get new hearing aids.  It’s a new adventure with new technology. I’m going to love being able to tweak programs in the app more to my liking. (I’m a bit of a control freak.) My new audiologist is hard of hearing himself. I’ve heard good things about him through my local HoH friends so he comes with recommendations.

He waved me into his office for a chat before the test. Because he’s hard of hearing, he’s good about facing me while talking. I didn’t wear my hearing aids going in, what for? They are going to come out for the hearing test anyway. I let him know. He goes on with questions about my history with hearing loss. There’s a small moment of panic as I get used to his voice and how he talks. I remind myself to wait for it, a technique we teach in our Lipreading Concept class. I catch on and it gets easier.

He asks about my last hearing test 4 ½ years ago. I forward my last audiogram to his email. He looks at it and looks back at me, “I’m really surprised you are doing so well without hearing aids” I tell him, “It’s because I’ve learned to advocate for myself and I teach lipreading classes.” 

Lipreading & Self Advocacy

Hearing loss doesn’t get better, but I “hear” better than I have in years. What gives? It was me and my ability to create healthy communication boundaries using the 3 Golden Rules. Hearing aids, cochlear implants, no hearing devices…these 3 rules have to be applied for successful communication:

Hearing aids are a great tool. I’ll never be without hearing aids as long as they help me. However, hearing aids alone haven’t gotten me where I am. It’s also taken the tribe, accommodations and being proactive. 

the Hearing Test

He uses a soundproof booth, something my last audiologist didn’t do. It feels odd getting back into one. Funny thing is, I’ve been in this very booth before. My first audiologist in Utah had this office. He retired and this new AuD bought the business. Once hooked up, he starts with the beeps. I wait…and wait. I’m picking through what is tinnitus and what are real tones. Sometimes my tinnitus mimics the beeps.

Next came the word discrimination test. It’s a computer voice, no lipreading is possible. Cowboy. Hotdog. I repeat what I hear. Those words are expected from years of previous hearing tests. Then it goes into one syllable words which are harder. Because he’s hard of hearing, he has to stop the computer voice and ask me to spell what I heard. I can tell I heard wrong because I see the corner of his eyes crinkle up into a smile above his monitor. 

Hearing in Noise Test

All these years, I’ve never had a “hearing in noise” test, abreviated as HINT. It starts with multiple people talking and at some point I’m supposed to pull in a voice that sounds closest to me and repeat what I hear. Out of 3 examples, I’m only able to figure out some words on the first test. The next two tests I couldn’t pull a word from. It blew my mind. I suck at hearing without my eyes. 

Classis ski clope loss, going rom upper left corner to the lower right corner. The red line is just below the blue line.
You can see all the sounds of speech I miss in the upper mid to right “speech bananag” in dark blue.

After the tests are all done we go over my results. In the past, my ears have stayed about equal, the red and blue lines (for right ear and left ear) mingled and crossed as they plunge down to the profound in a classic ski slope hearing loss. This time, my left ear has only dropped a tiny bit in a few frequencies. My right ear, however, has taken its leave of the blue line. Its line now stands alone below the blue line. My word discrimination is 64% in the left ear and 40% in the right ear, with the appropriate level of amplification. “It’s a small drop in hearing.”

The 20% drop of word discrimination in one ear doesn’t hit me all at once. It’s only a little loss. True enough, I’ve had bigger drops in the past. Count myself lucky??? Plus, I have already  been dealing with the hearing loss without knowing it for probably the last six months. As I sit in the office, a few pieces of the puzzle slide together with recent incidents. 

It is a loss.

He lets me try a pair of hearing aids in the office to see what I think. I wasn’t sure so we made another appointment to try other brands. As I leave, I feel the excitement of new hearing aids. It takes a day or two for me to mull over the 20% loss of word discimination in the right. A little grief starts to settle in.

To be continued.

Even though it’s “only a little loss”, it has ramifications. I feel the loss and it shows in my day to day life. I’ll explore that in another blog soon.

Past posts that might interest you…

Did you like this blog? Read more about our Lipreading classes. These classes have made a difference in my day to day communication. We shared Vulnerability with hearing loss in this blog/podcast.

Buy Us a Coffee

An easy way to support us and help us raise funds until we get our feet beneath us. (We’re getting there, thank you to our supporters!) We keep as much of content free as we can. We want everyone to access to communication. If you liked what we wrote, Buy Us a Coffee. We have new information here and new features.

Categories
Communication Practices Hard of Hearing Hearing Loss Lip Shapes LIVE! Lipreading Concepts Personal advocacy Speechreading/Lipreading

HoH Tour – The Restaurant

Good afternoon and welcome to a session of Hearing Loss LIVE!’s Tour Guide to the Hearing World. Join us as we travel through the land of the hearing, where English sounds like a foreign  language and people don’t look at you while talking. It’s a lang of mumbling people who don’t move their mouth and others who move it much too fast. We will journey through masks (yes they are still around), dodge communication disasters and create more awareness together. Pick your best seat (never feel guilty about picking your best seat) and enjoy our tour through the land of the Hearies, who don’t speak our language.

Today you have two of us as tour guides, Chelle and Julia! Two for the price of one! Today’s exploration is the restaurant…with hearing aids. Does it sound scary to you?  Restaurants are so awful that some hearing aid manufacturers have a dedicated setting called “restaurant”. We’re going to tuck you under our wing so you can observe the process with us. Julia will give us some hearing insight along the way. 

  • Ready?
  • Set?
  • Go!
We’ll meet you at the local eatery, Stella Grill.

Chelle: Julia and I pulled into the parking lot at just about the same time. I’m a little ahead of her so I wait in the parking lot for her. If the weather isn’t severe, why not wait outside for those last moments of peace? 

Hello, join us!

This is my second trip here, Julia’s first. I’m a reader and that means I’m always looking around for signs and written information. The first time I came in, I did not see a “wait to be seated” sign so my husband and I sat ourselves. Oops! The waiter let us know we were naughty. This time, I know to wait. 

Confession

Before we sit down, let me confess that I do not use my hearing aids in restaurants. I put my lipreading skills to use instead. I can’t tolerate the extra noise in restaurants. Now and then I try using my hearing aids, turning down the volume in an already personally tweaked hearing program for noisy settings. Again and again, I find myself clenching my teeth and so distracted by noise that I can’t focus on conversation. Glasses clinking. Silverware clattering. Plates crashing. Music. Lots of people talking over the music. Argh! I take my hearing aids out and I’m fine. This is a personal choice.

There are many people within my personal HoH circle of friends that would never go without their hearing aids in social settings. They also have newer hearing aids than I do so they can tweak the programs in their smartphone apps more than my 8 year old hearing aids. To each his/her own! Use what works best for you.  

Julia is giving me a little wave. Let’s see what she has to say.

Julia: Hearing partners can help by letting their HoH make the decision about wearing hearing devices or not during outings. Why? Better communication outcomes. If going out to eat is one of your favorite things to do, what communication adaptations can you implement to continue enjoying such events? Work together for solutions. If noise is an issue, why not try going during off hours?

Chelle: Thank you Julia for your support, understanding and the tip. Bravo! 

Choose Your Best Table

A little foresight while we’re waiting to be seated. The last time I was here I sat on this side of the restaurant: 

Great lighting!

It was well lit but so noisy with reverberation my husband had issues hearing. I did fine with lipreading. As we walked out of the restaurant, both my husband and I noticed a huge difference between the rooms. The sound was dampened on this side. I’ll request sitting on this side this time.

Better for the ear.

*Note: Did you know we lose our sense of direction with hearing loss? These kinds of environments are particularly hard. Let’s plan on talking one at a time. If we raise a hand, we’re able to locate the speaker. 

Did you know you can request where to sit? No? This is a part of being proactive with your hearing loss. Take charge! Pick a corner away from the big table of loud people. Corners are always wonderful. Stay away from the kitchen area if possible. Be sure to look for good lighting and that  your hearing partner’s face is not backlit. If you’re in a large group, see if you can’t sit in a circle instead of a long rectangle table. 

The hostess is ready to lead us to the table. I ask her if we can sit on this side of the restaurant. She stops and points to the table right about where we want to be. Perfect. I’ve never had anyone tell me no. 

Look for the specials!

Oh look, there’s the board with the day’s specials written right behind us. I always look for that too because serving staff tends to recite those specials at 100 mph.  

Julia and I sit down. I take what I think is my best seat. Can you feel it in your face when hearing is hard? I can. My eyebrows are pulled down and my eyes are feeling squinty. Oh my, her face in the shadows. I ask her to trade me places and she does. Much better!

Julia is a wonderful hearie.
Pay attention to the menu…

Do you all have your menu? Ah good. I want you to read the fine print for your lunch choice. Does it come with sides? How many? Where are the sides listed?  Look at the choices and make your decision before they get there. Why? Because the less questions our serving person asks, the easier it will be on all of us. 

*Tip: Be extra proactive and view the menu online before going to the restaurant.

**And a side note: They rarely list the dressings for salads. If you’re feeling adventurous, go ahead and ask. If not, there’s always ranch dressing.

The last time I was here with my husband, the waiter began reciting the sides even though I knew what I wanted, crispy fries. When he got to the house pasta salad, his eyebrows shot up and wiggled around. Ohh, that must be a personal favorite of his. I like trying new things so I decided to go with that in lieu of the crispy fries. That’s a bonus when you’re a “lipreader”. We notice the small nuances. I did not regret my decision to go with his choice side. It came with homemade noodles, yum!

That nice waiter wanders the path but he is not our server this time. We have a young guy and I inform him I use lipreading. He faces me and I place my order. Be proactive! Let people know what you need to communicate.They appreciate knowing what works best.

How many of you think you read lips? I knew it, not many. Guess what, you are lipreading whether you know it or not. If you feel unsure about using the word lipreading, let them know they have to face you so you can hear them. Do they talk too fast? Ask them to slow down a bit, they will if they want that tip.

*Special announcement…

This month’s special from Hearing Loss LIVE! If you want to learn more about lipreading, join one of our lipreading classes that will be starting in January. We have a two for one special because our hearing partners benefit a great deal from understanding the lipreading process. 

While we wait, Julia gets up to take pictures. She too notices a huge difference in the acoustics between the different rooms. We can’t really pick out why except maybe less windows. It’s odd! Have you paid attention to acoustics? Restaurants are often built for the eye and to be easy to clean. Rarely are they made to please the ear. It’s unfortunate. Some restaurants are smart enough to put up acoustic panels and that can help a great deal.

It looks like Julia has another valuable tip for us….

Julia: Have you heard of SoundPrint? It’s a smartphone app that rates noise in different settings. Share your latest restaurant experience on Soundprint and let’s get others in the KNOW. It’s better working together!

Chelle: Let’s help each other be in the know! We can work together noting the noisy restaurants, but remember to bring awareness too. Give them a solution or two.

The food is here! They have such great food here. Before he leaves, the waiter asks if there’s anything else he can get for us. (This is a common question at this point so it’s easy to anticipate, easy to “hear”.) Nope, all is good and we are practically drooling looking at our Reubens. Let’s chow down!

Notes from a HoH:

Don’t be a total hearie who chews their food and talks at the same time. We can’t just listen, we are read lips too. It makes it very hard to focus on what you’re saying when we are watching food jump around in your mouth. Instead of “listening”, we are now wondering if food is going to fall out of your mouth or come flying out at us. If you have just taken a big bite of your Reuben, take a moment to chew it up, swallow then take a sip of water to wash it all down. We can wait.  

Tip Him/Her!

Lunch was a success! We had some thoughtful conversation our waiter was patient and accommodating.  Let’s give him a nice tip. I like it here so I will be back. Hopefully both waiters will remember me and be just as accommodating.

Thank you for joining us. We hope we gave you a few good tips to you and you will venture out.

Happy Holidays to all!

If you like this blog, take a look at our blog on being Proactive.

Did you like the tour? Check our Grocery Store Tour.

We keep as much of content free as we can. We want everyone to access to communication. If you liked what we wrote, Buy Us a Coffee.

Categories
Communication Practices Emotions, Psychological Stress Hard of Hearing Hearing Loss Mental Health & Hearing Loss Personal advocacy

Hearing Loss and Collateral Damage

With Gloria Pelletier, LCSW, LISAC

Hearing Loss LIVE! teams up with Gloria Pelletier to take another look at the mental health side of hearing loss.

Collateral Damage Definition: Injury inflicted on something other than an intended target.

How does collateral damage apply to hearing loss? 

Hearing loss hurts us in unknown ways. It also unintentionally affects the hearing people in our lives. This is especially so when we are not upfront about our hearing loss. 

A smiling white lady with long silvery hair.
Gloria Pelletier

Gloria: “Collateral Damage” is a term I first heard in The Veterans Administration when I worked there as a social worker.  Our Veterans are trained NOT to have collateral damage. Not to kill those other than the intended target. 

How does it apply to hearing loss?

Chelle and I were talking about how often those around us do NOT modify their behavior to help us hear.  I got a real eye opener when I spoke to Chelle with my back turned to her, then later she spoke to me with her back to me.  We were laughing because here are two educated individuals on hearing loss doing EXACTLY what we tell our family NOT to do. Since neither one of us lives with another person with hearing loss we are used to speaking to hearing people, making the same mistakes they make.  

Loss of Casual Conversation

It seems so simple to ask for our family and friends to accommodate our hearing loss. It didn’t make sense to me why they did not or refused to. After my afternoon with Chelle making the same mistakes it became apparent to me that modifying one’s behavior takes thought, focus and perseverance. Too many times we think communication is easy and we don’t need help in learning to communicate. We have been speaking since infancy!  

Speaking and communicating are two vastly different concepts. In order for me to communicate with you, for us to have a two way conversation; I am going to need some modifications.  When I am not honest about those needs I essentially make sure you cannot effectively communicate with me. This is collateral damage.  

Bluffing does no one any good.

Our hearing partners have no concept of our needs so they continue on speaking to us as if they are having a casual conversation.  When I nod my head as though I understand. I have denied my communication partner true access to me. (This is collateral damage.)  I have made an unilateral decision NOT to communicate in a clear and understandable way.  

I did not ask the other person if they were OK with that, I decided my personal issue was more important than their ability to communicate with me. By being very clear and upfront with our conversation needs, we are truly communicating with someone and being respectful of their right to communicate with me. I have given them the tools to be successful. The environment may need to be modified but we BOTH agree on how that is done.

Another example of collateral damage: I watched a man dominate a group of people with his hearing loss. He complained he couldn’t hear, that he needed a one to one conversation.  He insisted the whole group accommodate his hearing loss. That in of itself is not a problem. 

What was the problem? 

He did not give the group information on how to communicate with him so he could successfully integrate into the group.  His own frustration with communication and lack of knowledge about his own needs created a strained group dynamic. (This is collateral damage.)  I watched the whole thing unfold, an unwilling participant to this dynamic.  He was angry, frustrated and demanding that others communicate with him without consideration for their ignorance on how to do that.  (More collateral damage.)   

When HOH folks are more proactive, a clear statement of accommodations alivates all the stress in the group. We then can have good communication and relationships with others on terms we can function in.  It is OUR responsibility to be proactive with our needs and to give others the information they need so communication becomes accessible. 

Hearing Loss has unintended bombs…

Chelle:  When Gloria introduced this topic, she had to explain it to me. Collateral damage??? Once I understood, I could see the silent ‘bombs’ that go off beind us. Boom…Boom!!

With my first pair of hearing aids fitted and adjusted, they told me I would hear a lot better. That wasn’t the case. I don’t think they realized how noisy hair salons were. Some of the collateral damage I remember coworkers was:

  • Are your ears in?
  • Turn up your hearing aids!

I couldn’t combat these hurtful remarks. I felt ashamed because I wasn’t living up to the standard. I retreated further in my shell.

Hiding hearing loss has consequences.

Back then, I was not honest about my hearing loss, I hid it because of that shame. People would try to talk to me when I wasn’t looking and I’d walk by without acknowledging them. They didn’t know about my hearing loss so I was considered rude & a snob for several years. (Boom!)

There were also ‘friends’ who liked to have fun with my hearing loss. While out gambling in a casino (loud music, slot machine background noise) some guy was showing interest in me and I was unaware playing video poker. My hearing friends told him to ask me for something ‘unsavory’ for a little fun. I heard him talking, looked up, he asked and bluffed, nodding my head. (Boom!)  That taught me to ask for repeats no matter what.

What else changed?

After 18 years and a big hearing drop, I educated myself. Thanks to the SayWhatClub and our local HLAA chapter I learned healthier communication strategies from my fellow peers. I learned how to reply to those comments above too. My answers are:

  • Are your ears in? Yes they are. They don’t work well in noisy environments. You need to get my attention before talking for less repeats. 
  • Turn up your hearing aids! With my hearing loss, it’s not volume so much as it is clarity. Hearing aids aren’t called hearing miracles for a reason. They help but they don’t replace true hearing. Please face me while talking, that helps a lot. 
A white lady on a snow mountain side in black ski clothes. She has a pink ski hat on with goggles raised up on her head.
While skiing, collateral damage would be other people assuming I can hear them saying “To your right” or “To your left” as they ski past. That’s a fear of mine. – Chelle

Hearing Partners Experience the Loss Too

Julia: “Emotional side of hearing loss” is a catch-all phrase, and there’s a lot that goes under that umbrella. Collateral damage fits in there with grief, and other feelings.

Hearing partners experience collateral damage too. It was the day we were hurt because we knew the person bluffed. It was the day we realized we could no longer whisper sweet nothings in our partner’s ear. It was the day casual conversations in the car disappeared. It was the day we struggled communicating our message during a phone call.

During our podcast, it dawned on me that the largest piece of collateral damage that happens with hearing loss is watching our elders mishandle it. 

Anger and Impatience

Our behaviors, good and bad, are contagious…

  • As a hearing person and I am modeling anger and impatience with hearing loss, I encourage others to do the same. 
  • If I am refusing to work towards productive change, I’m encouraging the same behavior. 
  • If I show impatience waiting for you to hear/understand, because it takes you a minute to hear… 

If I do this, I show others that hearing loss is a hassle. Here is more collateral damage.

Two white ladies, one younger and the other older. The younger lady with light brown hair pulled back is smiling and focusing on the camer. The older white haired lady is smiling and more relaxed. Palm trees int he background.
Thanks to being involved with the HoH community, Julia knew how to help her gma with communication needs.

As hearing partners, we can change this pattern. Let’s start working together with communication needs to have better relationship outcomes. Let’s find healthier ways to learn from the past. Collateral damage will happen. You can’t stop it. But we can minimize the damage. We can acknowledge the harm and work together for better experiences.

Above all else, let’s continue to look under the umbrella that I call the emotional side of hearing loss. Together we can create a community. With a community, we can bring about change. With change, we can create better understanding around hearing loss.

For those with hearing loss, help us help you. Disclose your communication needs. Let your friends and family know. Let your coworkers know because a lot of collateral damage happens there too. Trust this next step in life with hearing loss so we can all do our part. 

Own Your Hearing Loss

Michele: I hate to say it, but the Hard of Hearing often create a lot of problems for themselves by not owning their hearing loss or continuing in denial.

The back of a silver haired lady sitting at a desk with two computers. It's an online meeting on one of the computers.
Michele giving a presentation on being proactive while traveling with hearing loss.

While doing research into how to get audiologists on board with empowering patients, I connected with an audiologist practicing patient-centered care who found it a hard question to answer. They went on to explain their frustrations in dealing with patients every day who are fighting the stigma of hearing loss and are hesitant to move forward with even the most discreet hearing aids. I was surprised to learn that it is pretty rare to have patients who are accepting of their hearing loss, good self advocates, and emboldened to share their struggle with their friends and family. Collateral damage cuts many ways.


When we are not proactive in dealing with our hearing loss, we set the stage for collateral damage. The best thing we can do for ourselves, our family members, friends and all others we encounter in life is to learn how to tell them exactly what they need to know about our hearing loss and our communication needs. Not everyone we tell will do their part, but when we do our part we plant the seed for all of us to do better. 

Podcasts

Watch our companion podcast on our YouTube channel with captions. You can also find us on several podcast platforms (BuzzSprout with a transcript, Spotify, iHeartRadio and more) by searching Hearing Loss Live.

Other posts/podcasts you might enjoy…

If you liked this blog post, check out our other collaboration with Gloria,  Mental Health Myths in Treating Hard of Hearing Clients. Another good one might be our Vulnerability post. Disclosing our hearing loss and communication needs can be scary but it’s how we grow.  

Join Our Twice a Month Newsletter

We have a twice a month newsletter. We add tips on being proactive with hearing loss with experiments for you to try in daily life. You can sign up for our newsletter on our events page, scroll down a bit.

Help US Grow

If you enjoy our content and find it helpful, share it on social media. Or, consider donating so that we can keep going until our services are better established. Here’s our QR code.

Categories
Assistive Listening Device CART (live captioning) Cochlear Implants Communication Access Connections Hard of Hearing Hearing Loops & Telecoils Hearing Loss Personal advocacy Public Advocacy Self Advocacy Vocational Rehabilitation Services

Hearing Loss LIVE! Attends the SayWhatClub Convention

Let me give you a taste of a hearing loss convention. Julia and I went to the SayWhatClub (SWC) convention August 10th-13th in Nashville, Tennessee. We believe everyone should go to at least one hearing loss convention. You get to experience Hard of Hearing culture. What does that mean? 

Hard of Hearing Accommodations

You have the accommodation you need to understand everything that is said. They put in temporary hearing loops for those with telecoils in their hearing aids. (*Ask your audiologist to turn on the telecoil program before you go. Make sure it’s a dedicated telecoil program. About 70% of hearing aids have a telecoil.)  If you don’t have telecoils, it’s okay because there’s also a human providing live captioning as we go. (Called CART, Communication Access Real-time Translation.) Our human providing captions was Julia, who also sponsored some time through her CART business.

I helped to lay the hearing loop.

At conventions, you make connections with people. People who are more experienced and can answer all kinds of questions. If they don’t know, they know someone who can. Because most of the attendees are Hard of Hearing, we know how to talk to each other and people are patient with repeats. Knowing what it feels like being left out, they are usually careful to make sure everyone is included. 

Day 1

Conventions start with a welcome party. This is where you find old friends and make new friends. The SayWhatClub has a theme at their welcome party, this year they told everyone to wear a music t-shirt.  Somehow I missed the memo. Thankfully another attendee brought extra t-shirts and let me borrow one for the evening. 

I had a lot of fun with that shirt!

When the welcome party ends, we spread out to either the hotel bar or take on the city. Come on, we’re in Nashville so let’s explore! We found Printers Alley and a bar with a live band. It was loud but the group I was with knew some form of sign language and we lipread too so we got by. We all help each other with signs as needed. 

Day 2

We started the workshops. At the SWC con, give the first workshop to sponsors. Each sponsor had about 10 minutes to speak. Vendors help fund the conventions we love. They bring us knowledge and technology. Some are Hard of Hearing themselves. Here’s the sponsors this year:

  • T-Mobile Accessibility & Wireless who sponsored the welcome party. InnoCaption who sponsored the hearing loop.
  • InnoCaption has sponsored many SWC cons, they are a regular.
  • We have also had Mitchell Levy of Hamilton CapTel sponsoring and attending SWC cons for many years.
  • Advanced Bionics came and talked to use about their cochlear implants and the Roger Technology.
  • CaptionCall is another sponsor.
  • Yours truly was sponsor as well, Hearing Loss LIVE! and we talked about our Lipreading Concepts classes coming up. Vanderbilt University Brain Development Lab – They are studying how D/HoH children learn. Here is their project.
  • We also had Listen Technologies as a silver sponsor and Cochlear though neither could  show. Thank you vendors for helping make this convention possible!

Hearing Loss and Mental Health

The next workshop was Robin Nobling with NAMI of Davidson County. Her talk was  titled: Got Stuff? “Not a single person gets through life without a period of anxiety, depression, fear, grief, anger.” Those of us with hearing go through all those emotions well. She encouraged us to unpack our ‘stuff’ and move toward acceptance. What I got from it was that we should talk about it and connect with peers. 

Our last workshop of the day was with Cynthia Moynihan, a hearing loss advocate for 30 years who gave us Hearing Loss Empower Hour.  She shared some of her challenges from over the years with us. “Why me,” she used to ask. “Because I have the opportunity to learn and give back.” She finds a word to focus on each year, this year’s word is “opportunity”.  She’s found plenty of opportunity. She warned us against fitting into a mold, accept and embrace our uniqueness. 

The SayWhatClub also has daily, accommodated activities. That night we all met at the Wildhorse Saloon to learn line dancing with captions and sign language! Captions thanks to Julia and the ASL interpreter was provided by Bridges for the Deaf and Hard of Hearing.

Are you tired yet? I was but it’s worth it.  I love hanging out with my tribe. 

Day 3 Friday, August 12th

Friday’s first workshop was with Nancy Denning-Martin & Mike Helms of Bridges for the Deaf and Hard of Hearing. It was titled Advocating for Big Change. For those of us passionate about advocacy, this was informative! Nancy and Mike talked about creating change on the “micro level” which is family, friends and people you meet day to day. There is also the “meso” level of advocating which is things like churches, schools and other groups. Last, there is the “macro” level which affects change on a larger scale; politics, legislation, policy. Samples were given of each category.

The second workshop was:Jourdan Holder AuD, the director of the Cochlear Implant Program at Vanderbilt University. She gave us: Hearing Devices, An Update on Technology, Candidacy and Outcomes. She gave us a lot of information about cochlear implants. They are working on shortening the electrodes to have a better chance at leaving the remaining hearing. This is going through the FDA process of approval. 

Our last workshop was with Peter Hodes, Introduction to Tai Chi: Movement for Health, Balance and Relaxation. He led us through a series of tai chi movements, showing us how to breathe through them. He encouraged people to do what they could and no more. Pain isn’t the answer here. Use a chair or a table as needed. He made us laugh a lot. For many of us, wit was the first time trying tai chi. 

The afternoon activities were a tour of the Grand Ol’ Opry backstage, Madame Tussauds Wax Museum and then attending the night’s show at the Grand Ol’ Opry. 

Day 4, Saturday August 13th

Our last day is dedicated to afternoon activities in the downtown area of Nashville. They went to the Country Music Hall of Fame to attend the Songwriters Sessions Bonus and tour the Museum there. 

It’s banquet night! The banquet was sponsored this year by Safe N Clear. Safe N Clear gave away a box of masks with a window, one box to each table. They also provided each guest with a mask to use. 

Keynote Speaker

Our keynote speaker was Meaghan Thomas, a broadcast meteorologist in Nashville who created  The Heart of Hearing Foundation.

Her dad had a hearing loss while she was growing up so hearing loss was no big thing.  Her own hearing loss was undetected for many years because they thought, “she just wants to be like dad.” In a high school physics class, they were working with different frequencies and that’s when her hearing loss came to light. Still she considered it normal and blew it off. It wasn’t until college that hearing loss became hard to blow off. She didn’t know about accommodations so she “scooted by”. In grad school she was more upfront about her hearing loss and they let her record classes. 

As a meteorologist/tv host, she had to get an ear piece. She was fitted for that at a hearing aid place. That was her first real hearing test. Up to that point, her coworkers thought she was unfriendly because she didn’t always answer them. One confronted her about it and that’s when Meaghan let her know she was deaf on one side and had a hearing loss on the other side. That helped clear the air and that coworker became one of her champions. 

Hearing Aids

Along the way she was able to get her parents to buy a hearing aid. That was all they could afford. She was amazed at how much she could hear and what things made noise. However, it was too unbalanced having only one so it got put away. 

Three years later she was told about the state vocational rehabilitation program by a new audiologist. The VR program was willing to pay half of the hearing aids and she wanted them so much she was willing to go in debt to pay the other half. When she went in, they gifted the other half to her because they knew she would go on to do good things. She said she sat there and cried.

Last year she came out about her hearing loss publicly posting a picture of her holding her hearing aids out. The next day she woke up to a thousand comments, receiving encouragement. Many parents of kids wrote in to say it helped their kids know they do whatever they wanted. She appeared on Good Morning America with this story. Shortly thereafter she wrote a children’s book based on the comments. Once she made her money back from the book, 100% of the funds goes to the foundation she created.

The Heart of Hearing 

The Heart of Hearing Foundation was created to help others in need of hearing aids. Right now it helps people within in the Nashville area but she’d like to go nationwide and help many others.  Her main goal is to help the working age people, 20-45, to get hearing aids. These people need hearing aids to keep working. 

“When you finally become okay with who you are, you don’t realize how many people you are going to bless.” A lot of heads here nodding at the convention. Hiding hearing loss is a lot of work. When we become more about about it, and what we need to communicate, the easier it gets. We touch many lives and we can make a positive impact. 

Grow your connections. Attend a hearing loss convention.  

Julia and are looking forward to attending the Association of Late-Deafened Adults (ALDA) October 19th-23rd in San Diego, CA. This too is a fun convention with lots of great people and information. ALDA is famous within the Hard of Hearing community for their Karaoke Night. Let’s sing our hearts out because we can’t hear anyway! Just have fun. 

Join our September 6th Talk About It Tuesday at 6:00 PM MST to learn more about either convention.  

Crowdfunding

We are bootstrapping it and started Hearing Loss LIVE! with our own funds. We keep as much of our services as we can free. There’s two ways you can help us. You can share our podcasts, blogs and events. Or you can Buy Us A Cup of Coffee.