Advocating for Self Archives

6 COMMON MISCONCEPTIONS ABOUT PEOPLE WITH HEARING LOSS

Posted on February 26, 2018June 13, 2020 by Michele Linder

By Michele Linder

Deaf and Hard of Hearing people are often misunderstood and misjudged. Sometimes it is those closest to them who are the worst offenders.

Insight into a few of the intricacies of what it means to have a hearing loss is needed. And, because we love our hearing family members and close friends, we want to provide them with information to facilitate a better understanding of us. Unfair judgments and wrong assumptions divide us, and that is never good.

With an international group such as the SayWhatClub diversity is a given. We span in age from eighteen to octogenarians, and older. We also come in a variety of shapes and sizes, nationalities, ethnicities, religions, political bents, and geographic locations. We came to hearing loss at different ages and in different ways. We use various tools to aid communication, and we even have unique ways of looking at hearing loss and deafness. We are proud of how diverse and inclusive our club is.

Diverse, and yet we all tell the same stories and come up against the same misconceptions and truths.

1. WE ARE always ANGRY

My first SayWhatClub Convention experience was in Baltimore in 2011. In order to include those who were not able to attend, I took a lot of pictures to share online. The caption writer who provided CART/Live Captioning for our convention saw me with my camera and asked if I would take some candid shots of her while working for her website. I was happy to oblige. When I shared the pictures, she was surprised to see herself, and said. “Wow, I really look angry when I’m working, I need to work on that.”

We had a nice discussion about how the intense concentration it takes to caption everything that is spoken during a CART assignment is not unlike the intense concentration it takes to lipread and overcome a communication barrier.

Loved ones: All people with hearing loss can appear angry—I’ve been accused of scowling a lot—when hyper-focused on the visual. A face of intense concentration is a face that looks a bit peevish, no matter what is being concentrated on.

2. WE ARE DISINTERESTED and anti-social

How many times has a person with hearing loss heard, You always have your nose in a book, You’re constantly on your computer/cell phone, or You always disappear when we are in a group of friends or family?

If you’ve had hearing loss for any length of time you become hardwired to be prepared for frequently being left out—it’s a coping mechanism. Too many people talking at once or a particularly noisy environment makes it next to impossible to follow along without help, which isn’t always available.

Sitting and watching a group of people talk to each other, with little or no effort being made to include you, has an expiration. Personally, I can only tolerate it for a short time before I start to feel uncomfortable and stressed. I always have a book, my computer, and cell phone with me. I also frequently excuse myself for a break when it gets to be overwhelming. Then there are those times when I abandon ship completely for an alternative that allows me to participate.

Loved ones: Please remember all of this the next time you’re tempted to judge someone who is simply occupying themselves when they feel left out.

3. WE PURPOSELY IGNORE YOU

Until you have a drop in hearing yourself you will never understand how much of what we do, and our ability to multitask, is informed by sound. We often cannot give our attention to more than one thing at a time, so it may seem like we are intentionally ignoring you.

Things that need our undivided attention:

Cooking prep – knife work, measuring, opening the oven, or anything involving heat.
Dealing with small children – they really do take up all of your attention.
Writing assignments – both on the computer or via longhand; we need to get words down on the page while they are fresh in our mind. We can’t hear you without looking away, so in an effort not to lose our train of thought we have to wait for a point where we can pause to acknowledge you.
Art projects – anything that takes up all of your visual energy.

Loved ones: If your person with hearing loss can’t look away from what they are doing—because they really do need to look at you to understand—please don’t take it personally. Be patient until they reach a point where they can give you their attention. Better yet, if you see they are engaged in an activity that takes up all of their attention, don’t interrupt unless it’s necessary.

4. WE ARE CONTROLLING and rude

Often, when we can control certain parts of a situation, it is easier for us to participate. Anticipation and prediction are very important skills for someone with hearing loss. When we know what to expect we’re stacking the deck in our favor for the best hearing success. We often are most comfortable on our own turf.

Things that make us seem like control freaks:

Choosing where to sit in a restaurant or bar so we can participate in the conversation with as little interference as possible—quiet area, best seating position for lipreading, lighting and no backlighting, etc.
Choosing a venue that is familiar to us over one where there are more unknowns.
Steering or dominating the conversation gives us a break from having to hear and figure out what others are saying. Sometimes we are unaware that we do this, and why. If it’s a problem, talk to us about it.
Ask your loved one with hearing loss and they can give you scenarios from their own experience.

How others see your gently making your way to the front in order to lipread.

At a wedding years ago a coworker confronted me as I was gently making my way to the front of our group to see what the bride, another coworker, was saying to everyone. This coworker was very irritated and accused me of always needing to be front and center; she made a scene. I had to remind her that because I’m a lipreader I need to get close enough to the speaker to see what is being said.

When we ask for what we need, or put ourselves in a position for the best outcome, it all boils down to one thing—needing access in order to understand and participate.

Loved ones: Please consider this instead of thinking we are inflexible, controlling, or need to be the center of attention.

5. We love asking questions

There have been studies on how much information is taken in by peripheral hearing, and it’s a significant amount. When you lose the ability to overhear, you miss out on the incidental information most hearing people take for granted. All interactions within a household become purely visual for the person with hearing loss.

How a person with hearing loss receives information:

Visually
Being told directly and intentionally
Asking questions

People with hearing loss: How many times has this happened to you? You were in the same room when your spouse told someone else their plans for the day so they assumed you knew their plans. Or, it has been assumed that you know about your son taking a new job because you were riding in the car when he shared the news with his sister.

Think of a toddler inundating grown-ups with question after question. Of course it can be irritating, and we understand that. However, when the people in our circle are poor direct and intentional communicators, our only recourse is to ask multiple questions if we want information.

It feels really awful to never know what is going on because no one has bothered to tell you directly or intentionally. The mere fact we are present when a subject is discussed among others is far from a guarantee that we heard and understood. In fact, the opposite is likely to be true.

Loved ones: The only way a person with hearing loss can get the information they need is to ask questions. We’d rather not have to do this, so err on the side of oversharing information directly and intentionally. If you do this, expect the number of questions we ask to drop drastically.

6. hearing loss is equally hard for our hearing family members

Think of it this way… accommodating someone with hearing loss—most likely the only person in your life with a barrier—means you have to find ways to communicate differently. That will require some extra time, effort, and patience. However, for the person with hearing loss, every single person they interact with requires extra time, effort, and patience. Add the intense concentration it takes to figure out a world that they can’t hear clearly and it’s an exhausting way of life. We have to deal with our hearing loss 24/7, it never goes away.

Loved ones: We’re not discounting your part of the equation, but please don’t underestimate ours.

The picture below is of the ten people that most often need to accommodate my deafness—some are better than others. It is necessary for each of them to work a little harder to communicate with me than with each other. However, I have to work hard to communicate with all ten of them, in addition to anyone else I interact with. I appreciate their effort, but I’m not sure they can fully fathom mine.

It’s like playing in a basketball game where a ten-person team is up against a team of one. Not to mention I’m pit against adults who are all taller than my 5 feet 7 inches.

One last story to illustrate the point above… a year or so ago, my grown daughter and I were discussing hearing loss—I do a lot of volunteering and advocacy, so it’s common to talk about it in a conversational context—and she said. “When I was little and you would be banging around in the kitchen while cooking I always thought you were mad. I never considered it was because you couldn’t hear.”

I asked her why she thought that. After taking a minute to think about it, she replied. “Because Dad always made it seem like you were mad.”

Loved ones: You’re teaching others how to treat your loved one with hearing loss by demonstration.

People with hearing loss: Please share this article with your closest family and friends. Ask them to really think about how they perceive you, and why. Maybe reading about where you’re coming from will jumpstart some communication that will lead to better understanding. And, don’t forget to examine your own reactions and interactions. Every misunderstanding has two sides.

The ABC’s of Living with Hearing Loss

Posted on February 5, 2018April 7, 2018 by swc-kward

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.

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.)

Improve Lipreading Skills Using Anticipation and Prediction

Posted on May 16, 2017February 16, 2018 by Chelle

By Chelle Wyatt & Michele Linder

This article is about how to improve lipreading skills using anticipation and prediction. This is just a piece of the pie regarding speech reading but it is helpful to become aware of using this and make certain situations easier. Michele added some great comments about advocating for ourselves from the start.

Michele has been lipreading most of her life and she’s awesome at it. I’ve been lipreading somewhat half my life and only started taking it seriously the last three years or so. Michele tells me she doesn’t know how she does it, but I figured I could get her talking more about her lifelong skill by bringing up certain aspects that I use to teach classes.

Chelle: In the speechreading class I have handouts with blocks of words. We take turns saying the words, without voice, with repeats as needed. The students tell me it’s easy to do while in class because the words are right in front of them but this can be used in daily life in a number of situations also. Knowing the topic of a conversation will carry a person a long way in speechreading and there are a lot of situations where we can improve lipreading skills using anticipation and prediction of the topic.

Michele: I learned to speech/lipread naturally, without even knowing that I was doing it. By the time I was diagnosed with hearing loss in grade school I was already a speechreading whiz, according to the doctor, which was news to me. Once I knew I was good at speech/lipreading, I still didn’t realize how involved of a skill it was and how much of a role anticipation and prediction played in conjunction with lip movements, facial expression, and body language. All of those things work together and it may seem like a lot of effort, but when it comes naturally at a young age it’s simply a part of how you are hardwired, so I don’t even have to think about it. It’s how I made it through 12 years of public school with a severe hearing loss and no help from anyone but me.

Looking back, I can see all of anticipatory skills I used for success. New situations posed a challenge, but I’d gather information and learn as much as I could ahead of time so that I was prepared and knew what to expect. That gave me a head start and meant I didn’t have to work as hard in the moment. I’ve talked to others who lost their hearing early in life and gradually, and it’s something we all share.

Chelle: The grocery store is one of the easiest places to use prediction and anticipation and focus on lipreading. Different clerks ask the same questions over and over again.

“Did you find everything okay?”

“Do you want paper or plastic?” (for bags)

“Credit or debit?

I can anticipate those questions almost all the time and get by. Later stamps and ice came into play at the grocery store and I was ready for that one too. It’s not asked all the time so I might get tripped up with it from time to time. I’m sure to look up and focus on his/her face for the repeat. “Would you like stamps or ice?” Ice comes up in the summer months and not so much the rest of the year, stamps can be year round.

Another question that blew me out of the water when I moved to the Salt Lake area was “Do you want curbside service?” There’s only one store that does that here and it must have taken five repeats before I understood the girl for the first time. I even threw in I was hard of hearing and couldn’t understand her. When I finally understood the question, my answer was, “You do that here?” I shop often at that store and even though it’s not asked all the time, I now anticipate it when I hear something I don’t understand.

Grocery STores

Most grocery store clerks look down when talking or I’m looking down getting into my purse when they start talking. I hear enough to know someone is talking but I can’t understand what they say until I’m looking at them. After I hear a voice, I’ll look up and let that person know I use lipreading. (I never say hard of hearing anymore because they still look down and talk louder which doesn’t help me.) Usually people will make sure to face me after that and we get through it without a struggle. The grocery store is a great place to practice lipreading with anticipation and prediction.

Michele: Yes, the grocery store is pretty easy, however the whole looking down while talking (them), and digging in your cart to unload grocery items or rummaging through your bag for money or credit card (you) means you’re going to miss something that is said to you, so I no longer wait for something to go wrong. I let the cashier know from the get-go that I’m a lipreader and if they are looking down while talking, or if I’m looking away, I’m not going to get what they said. Problem solved before it’s even a problem.

Disclose your hearing loss and need to lipread

It is a good thing that we can anticipate the routine of a thing, as that is a big help in getting through the check-out smoothly, but we can also hone in on the stumbling blocks in a situation ahead of time and take them out of the mix by informing people of what we need from the very beginning. And, as Chelle stated, some things (regional and other) just can’t be anticipated or prepared for. When it’s a place you frequent you can get “smarter” about out of the ordinary exchanges and get to know people and procedure better, but when you’re traveling or it’s in a situation that you know you’re not going to repeat, it’s a different story.

Chelle: As a side note, let’s hear for the self check out stands! There are times when I’m too tired to focus on speechreading and I just want to get out of there as fast as possible spending little as energy as possible.

Michele: Ditto! It’s great to have the option to self-check if you’re brain is fried and you just can’t talk to one more person that day.

Restaurants

Chelle: Restaurants are feared by many hard of hearing people but not me, I often go alone. When I walk in the door I look for daily specials right away. (That’s having the words right in front of me like in the speechreading class.) The waitress announce the specials but they usually say it so fast it sounds like “yadda-yadda-yadda, yadda” to me. I can’t keep up with their recitation without having read it first on the board. That’s anticipation.

Michele: I have a theory… many things attributed to hearing loss—reluctance to go places alone or eat at a restaurant alone, are really not so much because of your hearing loss as they are to the variety in social “norms”. I know many people who have all of their senses in tact that would never travel alone or eat out alone.

Chelle: Now for using prediction; when the waitress comes to the table, she may or may not say her name (If she does I’ll look for a name tag but I won’t overly stress this bit) . One of the first questions she will ask is “What would you like to drink” taking a note and it will be followed by “I’ll be back to take your order.” Sometimes they will ask me if I’m ready to order too after getting my drink down but not always. Somewhere in here, I’ll let them know I use lipreading and to please face me. These people want a nice tip so they are generally very good about following my request.

Anticipate the questions- What kind of salad dressing do you want

Before ordering I read the fine print so I can complete my order with as little questions as possible. Back to anticipation here; what are the side options for a sandwich, and what are the options for my steak, etc. Sometimes I’ll get a salad and salad dressings aren’t always listed. If I have enough energy I go for the basics, either a vinaigrette or the always dependable ranch dressing.

That’s how I get by at restaurants. If they communicated with me properly I’ll leave a generous tip so if they see me again, they will be super accommodating.

Michele: I do many of the things Chelle does—look for the specials board and read the fine print—but I also ask my server if there is a written transcript of specials. If not, I let them know that many people, not just those with hearing loss, would benefit from reading about the specials, as it enhances understanding for all.

And, for someone who has that sixth sense—they are so perceptive that they know you have a hearing loss even before you tell them—I thank them for being perceptive and sensitive, and I give them an especially generous tip.

Banks

Chelle: Banks are fairly predictable too. For some reason they often comment on the weather, maybe because they are stuck indoors? It’s easy small talk? They will ask my how I’d like my change back, clarify which account, ask me for my ID as needed. Again, there is an easy out at banks thanks to mobile banking and ATMs. It all depends on my energy level.

As we get to know people, we can apply prediction and anticipation with them too. Everyone has their favorite words and topics to talk about. John talks about politics and Annie talks about her kids and grand kids all the time. Our neighbor will talk about gardening. Nancy talk about work and Bill loves sports. Some people use certain words over and over. This is why lipreading is easier once we get to know someone. If you have some hearing left, it even seems like you hear them easier.

Speak up about your need to lip read

Michele: Yes, as we get to know people better we can often improve our “smarts” here too. However, I’ve met a few people who aren’t predictable at all and their subject list is endless. If I have a hard time following them, I tell them straight out… “You’re going to have to tell me what you’re talking about first so I can put what I see on your lips into context.” This helps, but it’s a continual effort to remind them.

Stay calm

Chelle: The calmer we are, the easier it is to get by in these, and more, situations. We have to learn to relax and that’s no easy task at first. The minute we get tripped up, nothing will go right. I’ve always hated going to eat at Subway for that reason. They are always looking down when they talk because they are gathering ingredients and making the sandwich, even after I’ve told them I lipread. I get so uptight there that more than a few times I asked to “Please just make the sandwich like the picture and I’ll eat it!” Only one time have I had one person point to each ingredient and give time to nod or shake my head. If I frequented the place more often I’d get the hang of it and over come my dislike of the ordering process. I’m not a big sandwich person, however, so that won’t happen anytime soon.

Michele: I have to say that I almost never let something slide these days. When I do, it makes me feel bad about myself. However, if someone else just wants to move on, that’s their prerogative. We are all different and that’s part of what we have to teach the hearing public—one size doesn’t fit all… one accommodation isn’t a solution for everyone. Be very specific in asking for what you need.

tackling a new venue

Chelle: A few days ago I paid a visit to another fast food place I rarely go. I don’t know drill. The cashier was quiet and I don’t think she enunciated well either because I could only snag a word here and there. (I think she may have been hard of hearing because she missed part of my order, or maybe she got sidetracked by my hearing issues.) She asked a few questions that took multiple repeat and some gesturing before I understood what she wanted to know. There was another question I could not get at all and we both finally gave up. I didn’t have paper and pen and neither did they. Only later did I puzzle out that she was probably asking me what sauce I wanted.

Tell people you need time to process

Michele: For this scenario, I’ve started to let people know that they need to give me time to process what they’ve said, as lipreading isn’t like hearing instantly. We often need time to process what someone has said, and so I say that. It really does help, as I found I was often walking away when it dawned on me what the person was trying to say or ask. When you say, “Give me a minute to work out what you said.” you’re telling them exactly what you need.

Have something on hand so they can write it down for you

Chelle: Often my students teach me things; little differences in mouth shapes, they might show me a new app for the phone or a gadget. Last week a new student showed us her Boogie Board. Her daughters bought it for her because she has a severe/profound hearing loss and she was having a hard time with errands. This is a board you can write on and pushing a button erases the words. It’s like having a small chalk board, nothing is recorded or saved. Also, it is super light weight so easy to carry around. When she has a hard time understanding someone, she whips out that board and gets it in writing. How clever! I love how she does what she has to without fear to help with communication. She swears it’s been a lifesaver. I went out and bought one and I’ll keep it in my purse from now on. Well, after buy a bigger purse because the one I have now is already packed.

Using a smart phone to type messages with hearing people

Michele: I love it when someone comes up with a new way to facilitate understanding. While ordering food at a restaurant in the airport in Boston, MA the server typed out what I wasn’t understanding on the ‘Notes’ feature of his smart phone. I usually do have a pen and paper with me (I save the note pads from hotel stays and carry them in the outside pocket of my purse), or I’ll sometimes resort to handing someone my phone so they can type it out. Whatever works is the right way to go, and what works for some won’t work for all. Be flexible.

I knew this would be a good collaboration! As is often the case, Michele inspires me to do more. Being friends with and hanging out with people who are hard of hearing/deaf offers many opportunities to improve on communication by comparing notes. Does anyone else have anything to add about prediction and anticipation?

There are many good websites geered toward lipreading instruction. A good one is lipreading.org

Also, visit SayWhatClub’s hearing loss resources page for more information about how to improve lipreading and listening skills.