SayWhatClub

The ABC’s of Living with Hearing Loss

After writing about the importance of disclosure a couple weeks ago, I have been thinking about an easy acronym to use as a reminder.  The ABC’s are easy for anyone.   These  five strategies for coping with hearing loss will lead to more satisfaction and improve your quality of life.

ASK FOR ACCESS.The international sign for deaf and hard of hearing access

Look for this international sign that indicates access for the deaf and hard-of-hearing.Years ago, I went to see a burlesque production at a theater in Seattle.  When buying my ticket, I asked if their performances were captioned.  Of course, they weren’t.  This was a long time ago before John Waldo of Wash-CAP, and Cheri Perazzoli* of Loop Seattle began their campaign to make Seattle more accessible for deaf and hard-of-hearing people.  So the answer was “no.”  I could have gone and been miserable while missing out on most the fun, but I felt bold that day. 

I asked if I could have a front row seat, and told them I would be able to read the performer’s lips if I sat in the front row.  When they agreed and said that I wouldn’t have to pay more, I was surprised.   Additionally, they extended this benefit to one extra friend.  When I arrived they also provided me with a transcript of the production!  I was stunned.  You will often receive a “no” answer when asking for access.  But remember—the answer is ALWAYS no if you don’t ask.

Try to be flexible when they say “no.”  Think of something else that might work for you and ask for that instead. Often times, I find that if they see me as willing to compromise, they will try to meet me half way.   Meanwhile, be sure to support venues that offer access and let them know how pleased you are.

In her last post, Chelle mentioned that we should look for the international sign for deaf technology access.  (See the illustration to the left.)  There is also an app aimed at helping deaf  people find looped access.  This is so cool, because you can download it to your phone, which means you can be a little more spontaneous while out with friends.  It will help you find a nearby venue that offers looped access.

Buy the best hearing devices and ALD’s you can afford.

Notice I did not say to buy the most expensive.  If cheaper aids have the features you need, such as t-coil or noise reduction programs, fine.  But be good to yourself and buy what you need, not the smallest or least visible hearing devices.  Make access to sound your priority when purchasing hearing aids.  Without t-coil, you won’t be able to take advantage of the many venues that are looped for deaf access.  You’ll be left out of the loop.  Access to sound enables a better quality of life and more satisfaction.

Control your environment.

Barking dogs make it hard to hear when someone wears hearing devices.
Ask them to put their barking dog outside or in another room.

Whether you need to move to a quieter table in a restaurant, or ask someone to put their barking dog outside when you visit, speak up.  Hearing people have a natural filter that allows them to isolate the speech sounds they need to hear.  Hearing aids are better at isolating speech than they used to be, but they are far from perfect.

Many people will be unaware of your hearing challenges if you don’t tell them what you need, because they can hear even with the barking dog and clatter of dishes.  It hardly bothers them.  Moreover, expect to tell them more than once.  They will forget.   It does get frustrating having to tell people all the time.  Look at it another way, and realize you must be compensating so well that they forget.  Eventually it will become automatic for them to request a quiet table in the corner, or to put the barking dog in another room when you come over.

Lipreading.  If you rely heavily on lip reading, you may have to consider asking to trade seats with others if someone’s head is in front of a setting sun.  A setting sun in a window behind someone’s head will put their face in a shadow.  Your constant need to look at their lips will cause eye strain with the glaring sun directly in your field of vision.  Tell them.  Alternatively you could ask them to close the blinds.  Another challenge for lip readers is when hearing people want to talk in the dark.  It may seem like a no-brainer to you, but it isn’t to others.  Tell them you need light in order to see their lips.  Whatever you need, maximize communication by taking control of the environment.  It isn’t all about what you hear but what you can see as well.

Disclose your hearing loss.

Whenever you have trouble hearing,  tell people you’re having difficulties hearing them. Don’t wait for something embarrassing to happen.  We all bluff sometimes, but it’s usually better not to.  Realize that your compensating behaviors give you away.  People notice you are “different.”  They just don’t know why.  If you tell them you can’t hear and that you lip read, it changes their perspective.  Instead of thinking you are weird, harebrained, or inattentive, they will understand that you simply can’t hear that well.

Educate yourself.

A young woman wearing a blue tooth neckloop FM system that streams sound directly into her hearing devices.
Educate yourself about what you need for successful communication. ALD’s like the FM system above can be a tremendous help.

Find out what your audiogram means.  Learn about new features on hearing devices. Try ASL if you think it could help.  Research Assistive Listening Devices (ALD’s), hearing dogs, and the American Disabilities Act (if you live in the USA).  Learn about your rights and if there are state laws that will protect you from discrimination.  (If you are not in the US, most other countries have something comparable.  Find out what your rights are.)  Learn if there are resources that will help you pay for hearing aids, a captioned phone or blinking fire alarms.  The SayWhatClub has an excellent resource page called Hearing Loss Resources on the footer of its home page at saywhatclub.org.  Talk to others with hearing loss.  Doctors are often surprisingly unaware of the resources out there to help you navigate your life with hearing loss.   The more informed you are, the better you will be at addressing your needs. These five strategies will go a long way toward improving your quality of life.

 

*(Correction Note- Cheri Perazzoli’s name was previously spelled incorrectly.)

 

 

 

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

Tweaking a Hearing Aid Program..and Cookies

Yesterday was another trip to the audiologist to get my hearing aids programmed. For the last three months, certain sounds made me cringe, clench my teeth and rip out my hearing aids. Those worst of those sounds were in the kitchen; chopping vegetables on the cutting board, moving pots and pots around and someone setting something hard down on a counter/table. Those noises struck a nerve deep in my brain on the verge of pain. To top it off, rooms with bad acoustics made for such terrible hearing, I couldn’t understand any better than with them out.

At first I tried to bear with it, thinking my brain would get used to the harsh noise. Hearing people cope with noises all the time, right? However, it didn’t take long before I stopped wearing my hearing aids unless in public and even then, I could hardly wait to take them out. It took me about three months to get back to the audiologist, mainly because my favorite audi lived in another state about 11 hours away. I did not want to go through another round of finding someone I liked while living in Arizona.

When I moved back to Salt Lake, it still took me 6 weeks to see my audiologist. My time was spent settling in, getting things situated, pursing a business, skiing, kids…excuses, excuses. Mostly I only wore my aids when I absolutely had to but sometimes I tried to commit to the ten hours a day like last Monday morning.  I put them in and tried in spite of the pain factor .  Later that night while cooking, my boyfriend came home and the noise increased. I took them out, tucking them away into their box and thought, “That’s is it. It just isn’t working for me. ”

Tuesday afternoon while running errands, I drove to the audiologist office to make the appointment in person (I avoid the phone where I can). They had time for me the next afternoon and I thanked the office lady with all my heart. The next day, I barely made my appointment thanks to wasting time on FaceBook and a broody hen (we have three chickens).

I checked in and grabbed a cookie off the plate near the counter and sat down. Less than five minutes my favorite audiologist welcomed me into his high tech office. He hung the programming ‘necklace’ on me and we caught up until the programs came up on the computer. Then, he asked how my hearing was, and I told him.

After taking my right hearing aid off (I think), he slipped a very small wire not far into my ear and put my hearing aid back in. He told me this would measure the sounds how I heard it.  Then he recited a nice little rainbow poem and watched the monitor. He fiddled around for a few minutes on the computer watching the upper right screen mainly.

Four screens to play with

Then he put on noise that simulated a busy restaurant. “How does that sound,” he asked.

I think the left side of my lip curled up. “Annoying,” I told him.

He played with the program a little more, turned on the restaurant noise again. “How is this? Tolerable?”

“It’s not my most favorite sound in the world but, “I think so.”

“Would you wear your hearing aids in this environment?”

I was totally using lip reading at this point to hear him but I always use lip reading in those kind of situations. Was the noise intolerable? No. Would I wear my hearing aids this way? Yes, I could tolerate it.

“I’m comfortable here. I wouldn’t take them out.”

We chatted a few more minutes as he took off all the gadgets and I noticed a big difference.

“There were a few sounds spiking that would drive anyone crazy. This isn’t a typical situation but we got it fixed now.

“Ah! Then I’ll commit to ten hours a day again,” I told him.

He laughed. “I’ll walk up front with you to make an appointment for four months from now but if anything bothers you, come in sooner.

“You bet now that I’m back. Thanks!”

Upfront we made the appointment and I grabbed another cookie on the way out. How can you not love an audiologist who has a plate of fresh cookies out?

Driving didn’t bother me and I could hear the songs playing on the radio. I cooked dinner later without wanting to rip out my hearing aids. I woke up this morning and put them back in wearing them over ten hours. It’s amazing how much tweaking a program makes in hearing aids.