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.
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:
- 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.