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.)

 

 

 

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?

Steps to Coping with Hearing Loss

lets-talk

by Chelle Wyatt

Part of my job is going to senior centers; to teach a speechreading class, have a table at their health fair or give presentations. Recently a senior center requested a presentation on coping strategies for hearing loss, mostly because the program director herself has a hearing loss and isn’t sure what to do. The idea rolled around in my head for about a week before I could put it to paper. There are the obvious coping strategies;

  1. Face me when you talk. Mostly I tell people “I lipread” these days which usually works great for me.
  2. Get my attention before talking. If this would be done each time, there would be a lot less repeats. Just because I’m in the same room doesn’t mean I’m going to hear you because I need to see your face first to hear.
  3. If after one repeat I still don’t understand then rephrase or add gestures. Gestures can be a huge help.
  4. No talking from other rooms. If someone wants to start a conversation that person, hard of hearing or not, will go to the other person to talk.

Those four little rules will benefit a hard of hearing person a great deal. I added a couple more that aren’t as obvious.

plan-ahead-1

  1. Plan ahead. What will you need to hear better and enjoy in certain socializing situations? Will it be taking a friend who can help you hear? Or taking another hard of hearing person who understands? Will you need an FM system and get permission to hook it up to the microphone that will be used? Show up early to get the front seat? Taking your living room loop to the Super Bowl party? Captions? etc.
  2. Take a class geared toward hearing loss. Find a lipreading class or an ASL class. Attend any workshop you can that has to do with hearing loss. HLAA has free webinars monthly, check them out too.
  3. Join a support group. The SayWhatClub is a great for anyone who has access online. They have email lists and Facebook groups, choose the method you like best and join. Why? They are instant support for the bad times, good for ranting about the hearing world but mostly for the friendship and role models you’ll find. It’s finding your tribe of people. Then see if there’s a local HLAA or ALDA chapter near you because being with others who have hearing loss makes you feel good. Go to as many hearing loss conventions as you can for more friendships!  (The SayWhatClub conventions are awesome and this year’s will be in Savannah.)

I am including in my presentation 3 more items that aren’t commonly considered coping strategies as far as I know but I believe they are basis for everything I listed above.

Get out of the closet, quit hiding your hearing loss.

Get it out in the open and start telling people you have a hearing loss. Before we come out of the closet we use bad coping strategies; faking it, bluffing, talking so we don’t have to hear and the deaf nod. This may cause hearing people to think, “She’s losing it. That answer is off the wall.” And, “She’s kind of slow, she doesn’t talk much.” Then there’s the snobby conclusion, “She’s really stuck up. She didn’t stop to talk to me when I called out to her.” A good coping strategy is being upfront about hearing loss and your needs. It’s freeing to let it all out and later on you’ll realize hiding it was a lot more work. Wouldn’t you rather people know it was your broken ears, not a damaged brain? It’s hearing loss, she didn’t hear me instead of being stuck up and unfriendly. Doing this will open a new line of communication with others.

hiding

Educate yourself about hearing loss.

Without knowing exactly how your hearing loss works, you can’t describe it to others and they won’t understand our needs as well. Do you have a regular ski slope hearing loss? A reverse slope? A cookie bite? Conductive? Mixed? What exactly does having that hearing loss mean to you when it comes to speech, has an audiologist ever told you? Do you need volume? Less volume, more clarity? Do you hear a man’s voice better or woman’s? The more you know about your hearing loss the more you can address your needs specifically.

If you wear hearing aids or CI’s, how much do you know about them? What are their benefits and limitations? Do you know all the programs they offer? (Background noise, tinnitus relief, telecoil, Bluetooth, etc.) Find books on hearing loss and read all you can.

After that, learn all you can about assistive listening devices. Browse websites, order free catalogs and ask people who attend hearing loss support groups (they are the best resource). Ask for assistive listening devices in theaters, at the movies, at sporting events at church and anywhere you go. Do they have volume control headphones or captioning devices? Which ones benefit you most? Ask because while you’re asking you’re also educating other people about hearing loss.

knowledge-empowers

Stick up for yourself.

Stop worrying about burdening other people. Communication is a two way street. It’s up to us to advocate for ourselves and the people in our lives should be able to meet us halfway. My part is paying attention. If I’m stuck on a word and I’m doing my best there should never, ever be an eye roll, a “never mind” or “I SAID…” If you’ve done your job learning about hearing loss, then you’re armed with knowledge, let them have it! I recommend trying to be nice about it. There’s assertive and then there’s aggressive. No one likes being yelled at. Remember communication habits are hard to break (start now!) so have patience but be consistent. There are times when getting mad makes the point but use is sparingly. I made a good impression on my family after getting a “never mind” once too often by hitting the roof. They never said it again. I’m not proud when I lose it, even when it works.

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These were my steps to success with hearing loss, maybe they will work for you too.  There will still be pitfalls, tears and possible tantrums but there will be less of them.  Plus these steps help end the isolation many feel that comes with hearing loss.