SayWhatClub

6 COMMON MISCONCEPTIONS ABOUT PEOPLE WITH HEARING LOSS

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?

Feeling alone in a group.

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 trainof 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.

 

 

Learning a Foreign Language with Hearing Loss: A chi vuole, non mancano modi

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By Kimberly

     I walked into a pharmacy in La Spezia, Italy with torn khakis and a bloody knee, asking for help in my limited Italian vocabulary. The pharmacist smiled and proceeded to explain in slow, clear Italian the antibacterial wipes and creams that she had on hand, showing me the back of the boxes so that I could read the ingredients for myself. She used a hand gesture to indicate where I could pay, and turned the cash register screen toward me to make sure that I understood how much I owed. She did all of these things for me because she knew that I wasn’t fluent in Italian, but ironically, they are the very things that would help me in English as well because I have significant hearing loss.

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La Spezia, just before I fell!

     When I decided to teach a two-month study abroad course in Italy, I was expecting to feel the effects of my hearing loss more keenly. Any time that I’d spent in a foreign language class or watching a foreign movie had taught me that guessing what I’ve just heard (something that I have to do every day) is so much harder when I’m not hearing English. Most of the time, my brain automatically fills in words, and much like the autocompletion function on my cell phone, it’s usually a big help but sometimes hilariously wrong.

In a less familiar language, I have virtually no autocomplete helping me, and I’m forced to guess far more words—some of which I may know and some of which I may not. I expected to feel especially lost in Italy, but I decided to grin and bear it for the sake of a new and exciting experience (and the food)! What I didn’t count on was that living and working with people who speak Italian isn’t the same thing as trying to watch an Italian movie without captions. People in conversations, especially kind people (which many Italians are), will try to work with you so that you understand. And unlike my hearing loss, which people frequently forget about, my status as a foreigner in need of help was something that people in Italy almost never forgot. Unexpectedly, being an outsider helped me cope with being hard of hearing.

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The hiker’s view of Corniglia in Cinque Terre

     I had likewise overestimated the degree to which my hearing loss would make my time taking Italian classes more challenging. I had decided to take the accelerated Italian class with some of my students but harbored some doubts in the beginning about my abilities to keep up. However, being honest with my instructor about my hearing loss from the beginning helped us determine some easy strategies to help me follow along.

Whenever a new word was introduced, or even whenever I was having trouble with a sentence, she would write it on the board. As an instructor myself, I knew that all of the students were actually benefiting from this extra step put into place for me. I often find that that’s the case with accommodations for students. Because they reinforce an audio or visual component of the lesson, they typically aid learning for everyone else.

I still ran into frustrating moments in class. When my instructor asked me questions and I misheard what she had said, I felt the same sort of panicked feeling that I used to get when I was younger and not yet as accustomed to my hearing loss. I didn’t know where to begin—how to explain what I hadn’t understood, and I found myself frustrated that everything had to be just a little harder for me than it was for everyone else.

 

For some reason, being put on the spot and not hearing in a foreign language brought all of that back to me in a way that I can’t really explain. Still, I’d remember myself and remember that I’ve had so many of those moments in life, so I know how to deal with them. A couple of times, I’d see a student of mine struggling to keep up in an Italian class or conversation, nearly in tears, and I could say, “I know how you feel. It’s frustrating. Give yourself permission not to understand everything! Know when to try and when to take a break.”

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The view of Florence from Boboli Gardens.

     I’m not going to pretend like it was always easy. I ran into some real challenges. I had practiced explaining my hearing loss to people before I left. “Sono dura d’orecchi” means, “I’m hard of hearing,” but the first time that I tried to say it, the person who I was talking to snickered and told me, “Don’t say that. Say ‘Ho problemi di udito,’ which means, ‘I have problems hearing.’”

When I prodded as to why, I found out that “dura d’orecchi” was the clinical term for being hard of hearing but was also slang for “stupid.” That’s pretty much the most obvious example of audism in action that I can think of. “Audism,” for anyone who doesn’t know, is the belief that people who hear are better or smarter than people who don’t hear or have some hearing loss. It doesn’t take much of a leap to figure out how the word for “hard of hearing” came to mean “stupid,” just like Americans will sometimes use “retarded” that way.

Trying to figure out what I was going to call myself made me confront all of those foolish assumptions about hearing loss that used to make me ashamed, especially when I was a kid. I was actually afraid to let most people in Italy know that I had hearing loss, just because you never know how someone is going to react, and I wasn’t sure what their cultural attitudes were toward it. The more comfortable I got, though, the more I realized that people would understand. As long as you approach people with specific requests, like, “I don’t hear well. Can I stand near you while you give the tour?” they will help and be nice about it. Just like in the States, learning concise ways to explain what you need goes a long way.

     Learning how to ask for what I wanted was always a challenge. I’d ask an Italian coworker, “What’s the word for ______ in Italian?” and the answer would, of course, be incomprehensible to me! I learned to carry paper with me and ask, “Can you write that down?” Likewise, when I’d ask a waiter to repeat something, or when my husband would repeat it for me, the waiter would almost always switch to English, which was frustrating, since I wanted to learn the language. Simply explaining that I was hard of hearing first usually really helped, and when it didn’t, I just went with the flow. You can’t win every battle.

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The downtown nightlife in Genova.

     I had learned to let myself lose now and then when brushing up my language on Duolingo—a free language app that “gamifies” the study of foreign language. Rather than turn off the listening option, which would give me no practice listening, I simply tried listening and failed repeatedly! Yes, my scores suffered, and yes, it took me far longer than my husband to work my way through the lessons, but I was trying. I have to give myself permission to be pretty bad at languages! Even if other people never understand why it’s harder for me, I understand, and I cut myself a break.

When I was taking the formal Italian class, I asked for transcripts of oral exercises. One of my classmates, of course, griped that I “had it easier” on exams because of this accommodation—completely oblivious to the extra challenges that make this one “advantage” so necessary. Again, I could brush it off. When you’re hard of hearing, you have to either give yourself permission to fall behind or give yourself permission to ask for help, knowing that there will be frustrating consequences either way and that it’s important to pick your battles.

     I think that humility is a skill that anyone has to hone while learning a new language. Because of my hearing loss, I’m used to not knowing what’s being said. A lot of people aren’t! So maybe my abilities to learn a new language aren’t going to be as sharp as a hearing person’s, but my attitude can still give me the edge. I’m a different learner, not a worse one.

Learning a new language, especially through an immersion experience, is disorienting and tiring. For those of us who have the extra challenge of hearing loss, it can sometimes feel impossible. Yet, we have our own superpowers—our ways of dealing with confusion and exhaustion that we have honed over the years. Living in Italy reminded me that I’m far from helpless, and that there are always a few people out there willing to make the extra effort to communicate when it really counts.

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What’s It Like… to experience CART/Live Event Captioning for the very first time? Part II

An excerpt from Gael Hannan’s book The Way I Hear It, used by permission.

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In 1995, I attended my first gathering of hard of hearing people. I was on fire with a great idea to write a book about hearing loss—yes, it’s taken me this long—and the Hamilton, Ontario branch of the Canadian Hard of Hearing Association, under the misapprehension that I was a journalist, had invited me to address their group. I went into that meeting as one person and came out another.

It was like landing on another planet

Looking back on that night, I blush at my naivety, thinking I was going to tell these people what was what. I had only my own experience to go on; I did not know a single other person with hearing loss. My intention that night was simply to talk about myself, but when I opened my mouth to speak, it was with a last-minute humility. Half an hour earlier when I walked into that room, it was like landing on another planet—one populated with happy hard of hearing people, who clearly knew more about what was what than I did.

People proudly wore their honking-big hearing aids. They used FM systems and pointed receivers in the faces of people talking to them. There were two screens, two projectors, an amplification system, a looped room and, for my first time ever, the wonders of real-time captioning. As I gave my speech, my eyes sidled over to the captioning screen to see the miracle of my words as they came out of my mouth, or just a few seconds behind. (Maybe more than a few; I’m a fast talker and have driven a few captioners mad through the years.)

The access in the room that night was unprecedented for me. Even more powerful was the sense of connection from the other people. It hit me like a rock. I was looking out at eighty people who were just like me. These were my people! I understood their issues and they understood mine. Hearing loss affected every area of my life and it wasn’t just my issue; it was almost a way of life that I shared with other people.

If you would like to experience hard of hearing culture like Gael Hannon, consider attending an SWC Convention.