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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.

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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
Accessibility CART (live captioning) Communication Access Hard of Hearing Hearing Loss Public Advocacy Speech to Text Captions

Quality Captions

With the Global Alliance of Speech to Text Quality Caption Task Force

Our guests today are:

  • Sebrina Crosby, CRC. Sebrina is a Realtime CART Captioner and owner of Access Captioning, LLC
  • Kimberly Shea, NCSP, CRC. Kimberley is a realtime broadcast/CART captioner and she is the President of Breaking Barriers Captioning Services, LLC.

Serbina and Kimberly volunteer with Global Alliance Speech to Text with the Quality Caption Task Force

Captions are our access to television. Without captions, we have to make up our own stories with what we see. We did a podcast with Liza Sylvestre early this year, an artist who uses her hearing loss in her art. Her project “Captioned” is a good example of what we do without captions. Captions are our language. Quality captions matter. Don’t make us guess, especially when the information is important.  

Kimberly and Serbrina are especially busy lately with captioning so we are appreciative of the time they spent with us. In our current podcast, they talk to us about quality captions and their upcoming project which will improve captions…and they need our help.

Captions Matter

Chelle: This is how bad  my hearing is – I’ll be watching a movie and reading the captions as usual. My husband will come in and ask me why I’m watching a movie in a foreign language. I had no idea they were speaking a foreign language. To me, all dialog on the TV comes across garbled. I cannot watch TV without captions.

Captions are our access to communication.

My husband likes to watch the news. I read the captions. When the news goes live on certain channels, there’s no captions which completely leaves me out. I get up and leave the room, it’s not inclusive. Sometimes, the captions are so far behind during certain live shows, I can’t  get the full transcript before commercials come up and I lose the last little bit. This is when I use my wifi based assistive listening system from my good friends at Listen Tech. When the show is live, they generally face the camera so I can use lipreading too. The captions become backup.

Captions Sometimes Lag Far Behind

During our October Talk About It Tuesday monthly chat, someone else brought up television captions and the lag. This can be a technology issue, Julia explained. Sometimes it’s captioning going through different kinds of technology before it’s presented on the TV. It can be the cable box. There’s no real criteria for consistency between TV stations and our televisions. For no captions, someone at the TV station probably forgot to flip a switch. 

Saturday Night Live captions lag far behind. It’s frustrating.

We can make a difference

Serbrina tells us during the podcast, we can make a difference in our own cities by staying on top of our local TV stations. There are pockets of stations in the USA who do a good job with captions, even though they aren’t in the top 25. (The top 25 have to have live captioners.) It’s because the Hard of Hearing and Deaf community members are actively contacting the stations about caption issues. 

Last weekend, I had a friend approach me about a recent Utah governor’s address on TV not being captioned. She and her husband have started to use captions more often.  She said they had an American Sign Language (ASL) interpreter but there were no captions. Why, she wanted to know. The Deaf community have been more firm with their communication needs than we have. We can learn from them.

Follow Up

We need to follow up with the TV stations who are not providing captions. Each station has a caption assistance page (it’s the law to have captions). I keep my most watched local TV station’s “caption assistance” pages on my phone. We can call them, email them or fill out their contact page. I’ve let stations know what the problem is and I’ve also complimented another station on providing great captions. When it’s a glaring problem, I get on my local HLAA email list and tell others to tune in and write to the TV station too. I told her next time she sees something like that, let me know and I’ll spread the word. Sebrina is right, the more of us who do this, the better captioning we get. 

Hearing Parnters Can Help

Julia: Quality captions help everyone. If you’re a hearing partner, odds are the captions are on all the time. I know at our house they are. My guess is that you are using the captions more than you realize. I do. When they are poor quality, whether the program is live or pre-recorded, it’s distracting and it drives me nuts!

But, as a hearing partner you just have to put up with it, right? Wrong.

I encourage everyone (HoHs, hearing partners, ANYONE who uses TV captioning) at home, in a bar or restaurant, at work…ANYONE who may want to use or needs to use captions at a future date, (come on now hearing loss can happen to anyone) to get involved. When local stations hear from their local viewers they take note. 

During a local news broadcast you might even see an advertisement about a local store who is credited for sponsoring the closed captions. Drop by that local store and let them know captions matter and let them know if it’s quality captions that they are sponsoring. 

Change happens when we speak up together. 

Call to Action!

Kimberly Shea: “The first place we need to start is making a record. We will gather video data and samples from all over the country. The Task Force will evaluate each video against a metric system that is designed for captioning. This will address the quality, and the usability of captions for consumers. This has never been done before.”

Global Alliance will have a call to action soon and you will see Hearing Loss LIVE! sharing it. 

The more of us with hearing loss helping, the better captioning will get. 

Join Global Alliance Speech to Text. Together we make a difference.

Did you like this blog? Check out the podcast we did with Jen Schuck of Global Alliance earlier this past spring.   

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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

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Categories
Advocacy Hard of Hearing Hearing Loss Self Advocacy

Proactive with Hearing Loss

Do you manage your hearing loss? Or does it manage your life?

Many people with hearing loss tend to be passive which leads to isolation. We miss out on opportunties and it interrupts our relationships. When we lean too heavily on others to hear for us, we lose ourselves. We end up reactive.

Today we take a look at being proactive with hearing loss. Find out how to manage your hearing loss so you find yourself again.

Michele: Many Hard of Hearing people are constantly on high alert, waiting to react when their hearing or devices fail them. Hypervigilance is part of what makes hearing loss so exhausting, but there’s a better way; choosing to be proactive.

I look at being proactive as taking charge; actively deciding not to wait to react. These are the steps I used to do that:

  • Educated myself about my hearing loss and the tools, technology, techniques and accommodations that would help me communicate better.
  • Defined my needs through experimentation.
  • Developed effective ways to tell others what they need to know about my hearing loss and communication needs.
  • Practiced to find what works best in each situation.
  • Embraced flexibility: When one thing didn’t work, I tried something else.

The shift in energy, from being on high alert to being proactive, really does improve your life and takes the anxiety out of functioning in a world not made for people with hearing loss. By choosing to act first, you’re in control of the way things will go.

An Example

At the start of the pandemic, I had someone contact me to ask how I would have handled going to a new restaurant where you order at the counter:

Problem: The cashier taking orders was behind plexiglass and was wearing a thick black mask. I wasn’t sure how to order, but knew I wouldn’t hear anything, so I asked for a printed menu to point to what I wanted, but they didn’t have one. I gave the combo number I wanted and the cashier kept asking me questions which forced me to tell them I couldn’t hear. They were trying to be accommodating and were kind, but I don’t even know how to help myself; I was having so much trouble trying to understand I almost burst into tears and wanted to leave.

My advice: Actively practice being proactive.

Solution: I always carry a pen and paper with me, and I premise things by speaking first and telling people behind counters that I’m not going to hear them with a mask because I lipread. So if they have a question I’m going to need them to write to me. 

I also often use Otter and Ava (automatic speech recognition apps) on my phone and I enable apps well before I get to the counter to order or check out.

Michele, phone out ready to use ASR as needed.

The next time you find yourself in a similar situation, say what’s true upfront (what you just told me), “I am new to this restaurant and have no idea how to order. However, I’m not going to hear you with masks, because I’m a lipreader (have hearing loss, am hard of hearing, etc.), so I’m going to need you to write to me.”

Go back to this same restaurant and practice until you are comfortable. Set it up and leave nothing to chance.

Yes, that’s what being proactive means. Taking charge and leaving as little as possible to chance.

Chelle: You’ve heard it as self-advocacy…that sounds like too much work and it reminds us of changing laws. We’ve also called it being assertive. Assertive often shows up side by side with ‘aggressive’ so I think assertive gets a bad rap. That’s why I settled on ‘proactive’ recently. It has a nice ring to it. We can be proactive with our hearing loss.

Reactive

Reactive is the opposite of proactive. When we are reactive we get flustered, upset and isolated. Here are some of my past reactive situations.

  • Went to a banquet dinner and sat in the back with my husband and his friends. Couldn’t understand anyone so went to hide in another room.
  • Faked my way through many conversations because the speaker turned away, it was too noisy or I couldn’t lipread them.
  • Stayed home instead of going out. It was too hard to socialize, especially in groups. 
  • Sit wherever the host puts me in a restaurant. 
Proactive

When we are proactive, we are managing situations as they come. 

  • Here’s a proactive statement I use when meeting new people or talking to strangers such as grocery store clerks: “I hear enough to know you are talking but unless you are facing me, I won’t understand you. I use some lipreading.”
  • I’m proactive in attending captioned plays showing support for the wonderful accommodation that keeps me, and others, participating in public. I also try to support any hearing loss related event because not enough people show up.
  • I’m proactive in restaurants, asking for booths or going to quieter areas so I’m not struggling as much to hear conversation. I’m looking at lighting too. I’ll ask to switch seats with people if they are backlit making it harder to lipread. 
  • When going into public venues, I’ll ask about assistive listening devices. If there are issues, I’ll let them know so the next person who comes in won’t have the same issue.
  • Some events I’ll show up early to get my preferred seating. I’ll also let the person doing the talking know what I need for better communication. I’ve taped FM systems to microphones to help me hear better.
  • Sometimes, it’s been leaving meetings or events when there are no accommodations. 
Chelle, proactive about hearing on a train tour recently. See our social media for more on this.

Those are some of the ways I manage my hearing loss. Life got a lot easier when I started managing my communication. So many people don’t know how to talk to us. When I help them help me, it also helps those who come after me.

Hearing Partners

Julia: Hearing partners can be more proactive by being involved.  Learn your partner’s hearing loss truth. Learn how you can support them so that the changes have positive outcomes. Because I guarantee you, hearing loss affects both parties. 

Don’t take over, don’t be their hearing human. Don’t decide what they can and can’t do with the hearing loss. Why? If this is not already in your family dynamics, you will be angry and resentful. If this is your family dynamics you will be even more angry and resentful. Ignorance is not bliss. You have got to work together. When you have knowledge as the hearing partner it will save heartache and hurtful words.

Medical Settings?

You can be proactive by learning when it might be an appropriate time to help interpret a conversation. Do not have the conversation for them. Only help when clarity is needed.  FYI, medical setting and interpreting should be a hard fast NO. I know there may be exceptions to my saying that, but short of an ER visit don’t, just don’t. Instead, help them advocate for captions so they can actively particapate in their care as appropriate.

You can be proactive by asking businesses and event centers to install and use ALD equipment. Keep an eye out for the ALD symbols with with them. Learn the difference between live human captions (cite AF) and automated speech recognition and where each is helpful. Never settle. Communications may look one way for a long time and overnight be something new. Know it all and continue to educate yourself and others. Some day they may need the knowledge. 

Assistive Listening Symbol

Be proactive with your communication outcomes before hearing loss becomes a problem. Not when you are desparate and you’re pissed off about the hearing loss.

  • Stop talking from different rooms now. 
  • Start facing each other for better understanding. Learn how to gesture.
  • Use a ASR app for notetaking.
Don’t wait for it, learn to be proactive now.

All of this and more can be found in our Lipreading Concept Class. Together we can change the look and stigma behind hearing loss.

Podcasts Available

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

If you liked this blog post, try Workplace Accommodations, Hospital Communication, and/or Get Out of Your Own Way.

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