SayWhatClub

Navigating A World That Assumes You Hear: How to Deal With Not Being Able to Hear

By Michele Linder

maze-of-worryanddoubt

At whatever stage in life you came to hearing loss, it’s likely no one gave you any specific information on how to deal with not being able to hear. No one instructed you on what to expect, how to react, or what to do to make communication easier. There’s no required Hearing Loss 101 class.  There’s no orientation for newbies that teaches you how to navigate through difficult hearing situations.

          There should be.

I recently posted a great article to our SayWhatClub Facebook Page that I read on The Mighty, a website that publishes “real stories by real people facing real challenges”. In the article, To the Girl Who Saw Me Struggle to Communicatethe author describes a process she’s gone through “hundreds of times” throughout her college career—standing in line at the bistro in the busy student café rehearsing her order before it’s her turn at the counter. 

         “I’ll admit to wondering… if this situation is something she’s dealt with “hundreds of times”, why isn’t she better at it?”

I’m going to break this simple scenario down for you. I spent several decades letting these very simple situations turn unpleasant, frustrating and awkward.

          Yes, I still assess situations that are new to me.  I rehearse, and use my super powers (lipreading, anticipatory and observation skills, etc.)  I do all I can to make things go more smoothly.  No longer am I on pins and needles waiting for what can, and most likely will, go wrong, because–

I tell people that I can’t hear. 

Don’t be afraid, just do it. And, however you say it is fine… for me, I say “Hi there… first, let me mention that I’m a lipreader and I need to see you speak, so please don’t look down while talking or I won’t be able to read your lips.  Lipreading is great, but it doesn’t always work, so I may need you to write down what I can’t hear.”, as I hold up my trusty pad and pen. That may seem like a mouthful, but it’s pretty much a given that anyone behind a counter—wait staff, check-out or bank clerk, etc.—is going to talk to you while looking down, so clue them in at the start of things and they’ll know better.

And, speak up when you foresee a problem. 

If, when you place your order, the counter person asks for your name, let them know you’re not going to hear them call you when your order is ready. Ask for a plan B.  If they make a workable suggestion, great! If not, offer a solution of your own—“I’ll stand over there and watch for you to wave at me when my order is ready, but if I miss it someone needs to come over and get me.”

          If something does go wrong and you miss a cue, and the aggravated guy behind you taps you on your shoulder and rolls his eyes…

Keep your cool.

Because the minute you freak out, all the skill in the world won’t be of any use… you’re now so flustered that any ability you had to figure out what’s being said goes out the window.

And, do let rude people knowin as nice a way possiblethat rudeness is not helpful.

It’s not something they would want from others, so thank them for getting your attention. Tell them you’re deaf and sometimes miss things.  Also tell them the aggravation and eye-rolling isn’t necessary or appreciated.

          If you need justification for calling them out…

Consider it a teaching moment. 

Express your hope that when they next encounter someone that seems to be not paying attention, consider that they might also be deaf.

          “If you do lose your cool, for whatever reason—someone has made you feel “less than” or you’re embarrassed at not hearing and panic—consider this…”

It’s not your fault that you can’t hear. 

Stop buying into the misconception that you’re inconveniencing the world because you have different communication needs.  

          Stop pressing your lips tightly together and glancing at the scuffs on the toes of your black Converse low-top sneakers. No amount of fiddling with your hearing aids or wishing will produce an answer to the mysterious unknown question you didn’t hear. It will never magically appear out of nowhere in written form.  But you can…

Have them write it down, 

thereby creating your own magic! Hand over your paper and pen, and say “You’re going to have to write that down, I’m not getting it… thanks.” Don’t pose it as a question, simply offer instruction for what you need.

It’s empowering when you realize you don’t have to leave difficult hearing situations to chance. When you actively participate in finding ways to make things play out as smoothly as possible, you’ll likely not need a gentle and helpful soul to swoop in and clue you in… you’ll be able to handle the situation yourself before it turns unpleasant.

However, as the author states, she was having an incredibly stressful week.  She was feeling extremely insecure, isolated, and alone with regard to her hearing loss.  We all know how that feels. It’s normal to have bad days when we feel vulnerable and don’t handle situations as well as we could. So, there’s no need to beat yourself up about it. 

          “It’s certainly not my intent to beat the author up in any way, either. I’m really glad she gave the world a window into what life is like with hearing loss. We’ve all had encounters where we’re not in the frame of mind to be our own best advocate.  Sometimes we’re just tired of explaining. Her article made me think about my own bad days, and how far I’ve come in my fifty-seven years.  What I’ve learned along the way has made me stronger and a better person.”

Hopefully, on those bad days you’ll be as lucky as the author was at crossing paths with a particularly tuned-in person who took it upon themselves to step in and help, and who didn’t make a big deal about it.

Sometimes we, and others, can make hearing loss out to be a bigger deal than it needs to be.

          Yes, it is a big deal that one whole sense is not working the way it was designed to work and it affects almost everything you do, especially how you communicate. However…

Take charge! 

Actively work on ways to eliminate what makes a situation unpleasant. Think of it as instruction that increases your self-sufficiency, which in turn makes you feel more capable. And, capable is what gets you out in the world to enjoy your life more.

Live more, isolate yourself less.  Join SWC for more ideas on how to advocate for yourself.

          Most people with a disability want to remain independent and self-sufficient and to feel capable.  Don’t you?

Auditory Fatigue/Listener Fatigue

by Chelle Wyatt

I belong to three hearing loss organizations and they each have something I value (SayWhatClub is closest to my heart). I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue or listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

a picture of a brain in a frying pan with the caption my brain is fried depicts how auditory fatigue feels

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Fuller asks, “How can audiologists better understand and find ways to counteract the underlying factors that cause listeners to decide to quit participating in activities when it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding and withdrawing from social participation because it is too hard to listen?

It’s said we hear with our ears and listen with our brain. Now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes an effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things are hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.

charlie brown lying awake in bed with the caption , "I'm already tired tomorrow.

Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat auditory fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set.

Some people report learning speech reading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.

More links on auditory fatigue

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.

Hearing Loop

My first hearing loop experience was at the Hearing Loss Association of America (HLAA) convention in Rhode Island last year. At my first workshop, one of the coordinators announced that each workshop was looped.  Be sure to turn on our T-coils, she said. Excited to try this technology, I’ve only heard about, I turned mine on.

It took less than five minutes to be totally amazed. I heard so well, I felt like a hearing person for the first time in years, watching the speaker instead of the CART screen. The clarity through the loop was a hundred times better than using an FM system. As a bonus, I heard through my hearing aids alone instead of borrowed earphones or neck loop. This time I simply pushed a button on my hearing aid and I heard. Why wasn’t there more of this available in America?

I had to find a way to share this technology however I could at home. I wanted other people to experience it and know the difference too. On our local Walk4Hearing committee we had Kristin who works with Listen Technologies. In the past, they supported our Walk with assistive listening devices but I knew they were getting into hearing loops too. Could we loop our Kick Off party for the Walk? Yes, she was willing to set that up for us and even better, she could probably set up a portion of our stage area at our Walk in the park too.

The Kick Off party was small but those of us who were there with hearing aids or cochlear implants, used out T-coil. We sat at our tables and heard the speakers. Listen Tech also looped our registration table making hearing above the noise a piece of cake. The day of our Walk, lots of people showed up and there were signs posted everywhere encouraging people to try the hearing loop. During our entertainment which happened to be a clown who told lots of jokes and stories, I looked around and saw people with hearing aids and CI’s laughing along with the rest of people. Later, speeches came through loud and clear making it a memorable Walk.

Kristin of Listen Tech.  They provided  ALD’s at the Walk as well a hearing loop.

Last week, Listen Tech held a convention for their distributors. They invited some of us from the hearing loss community to come to their hearing loop workshop portion. Juliette Sterkens, AuD from Wisconsin spoke first and she gave the best presentation on hearing loss I’ve heard. She talked about who is losing their hearing and why, and she explained audiograms. She talked about high frequency hearing loss (the most common type) and what’s it like; how we hear vowels better than consonants and how our mind struggles to fill in the missing pieces.

Giving a visual example, on the screen appeared the sentence, “She saw oars bobbing.” Beneath it was missing letters. Take away the original sentence, she filled in the gaps and it became “She saw cars fueling.” She also ran audio recordings to show exactly what hearing aids pick up in churches, court rooms and restaurants. Then she played a recording of what it sounded like through a loop. The difference is astounding. The hearies in there were beginning to understand our world a whole lot better. (You got to share the link above with hearing family and friends.)

She went on to explain that hearing aids work best within a four foot range picking up the closest and loudest sounds like coughing, papers rustling, babies crying.  Without the loop, noise surrounding the hearing aid user drowns out a speaker twenty feet away. The loop brings the speaker right to the ears and cutting out surrounding noise.

Five of us who were hard of hearing sat in the back of the workshop at a looped table where it was impossible to lip read… and we all heard every word Juliette said without the benefit of CART. Normally in this kind of situation, I have to arrive early and make the presenter aware of my hearing loss. I ask them to wear my FM system and face me as much as possible reminding them I lip read too. Then, I stake out my position up front and in the center where I still very much struggle to hear. I felt exhausted mentally and physically after two hours. Here, Juliette talked for almost two hours and I felt no fatigue at all.

How we saw Juliette from the back row.
How we saw Juliette from the back row.
Our looped table.
Our looped table.

The incredible loop set up at the conference let me hear audience participation as well for the first time in many, many moons. Every chair had a wireless microphone. To ask questions or add comments to the discussion, we each had to turn the mic on which also fed into the loop system. To top it off, a screen at the front of the room had each microphone listed in a diagram. The seating was assigned so anytime someone turned their microphone on, their spot in the room was highlighted red on the chart and their name listed to the left of the diagram. What a fabulous system, incredibly inclusive, for anyone with or without hearing loss.

Microphones were in front of each chair.
Not the best of pictures of the chart up front but hopefully you get the idea.
The chart showing who was talking and where. This isn’t the best of pictures but hopefully you get the idea.

The first half of the seminar was about hearing loss. The second half was the technology side of hearing loops and were invited to stay. I’m not a techie but I’ll try to do it justice here… A loop system consists of an audio source, a loop driver and wiring. Cables or loops are laid around the room according to size and specifications creating a magnetic field which hearing T-coils pick up. It brings sound direct to the ear eliminating audio distance. There are various choices of loop drivers and different ways to layout the wires according to the needs.

As I understand it, past looping systems (which started in the 70’s) had lots of problems which turned off both the users and the people who bought them. Today’s technology has improved by leaps and bounds. Qualified installers are able to get beyond the biggest problems which are over spill and metal interference. Over spill happens when one loop system spills over into another looped room.  This Different wiring and layouts eliminate this. I didn’t understand how they get around metal interference but they do with various techniques. They showed us 6 different layouts and discussed common pitfalls and fixes. All I know is the loop systems I’ve experienced in this last year have delivered terrific sound.

Hearing loops are my favorite way to hear. There’s other technology out there with bluetooth being touted as the next big thing. I have a bluetooth device that connects my hearing aids to my phone. It drains the battery on my hearing aids, the bluetooth device itself and my phone super fast. It’s handy but it comes with a price. Using my t-coil doesn’t drain my hearing aid batteries any faster than normal so I keep them longer.

When you see this sign:

telecoil ALD sign

Turn on the t-coil in your hearing aid and give it a try. (The ADA requires signage.) Many tourist sites and tours in Europe are looped and it’s gaining popularity here in the USA. Recently the New York subway system was looped in certain places and a taxi company in NY will be looping their cabs soon. Quiet a few churches are getting loops here as well as some colleges, auditoriums and senior centers. For a personalized touch, people are getting their living rooms looped for a higher quality television sound too. How about some places we’d like to see looped: drive thru’s, bank windows, theaters and meeting rooms. It’s a world of possibilities.

There's Juliette in the red in the back row, Kristin of Listen Tech and me in the brown. The others are great local advocates in our world here.
There’s Juliette in the red in the back row, Kristin of Listen Tech and me in the brown, plus the other local hearing loss advocate extraordinaires.

Here are some further links to check out:

http://hearingloop.org/ David Myer’s site

http://loopwisconsin.com/ a site Juliette Sterkens runs

Audio Induction Loop via wikipedia

http://www.hlaabq.com/LoopNM.html Loop New Mexico campaign

HLAA’s Get in the Hearing Loop

http://www.aldlocator.com/ Assistive Listening Device Locator