By Michele Linder – Originally posted Dec. 14, 2017
There are both good and bad things related to hearing loss, but the misconceptions that others⎯those who do not know what it’s like firsthand⎯have about it are something we who live with it every day have a responsibility to change.
Do you remember the exact moment that caused you to turn the corner? That point when you went from accepting the negative of how others see you with hearing loss⎯sometimes we feel as limited as the wrong perceptions we encounter⎯to a more confident and better version of yourself and capability?
For me, it was a gradual, decades-long process. Each teaching moment pushing me toward who I wanted to be without my even knowing I was headed there, until something would happen to shine a light on the positive. I’ve written about such moments, and this article, from November 2014, was a memorable moment for me:
Be What You Want the World to See
Originally posted on the SayWhatClub Blog, November 20, 2014
You just never know… there will be moments when people cross your path at the exact time you need them, for the exact encouragement you are looking for. I’ve had this happen to me countless times in my life, and when it happens I’m always in awe of how the universe looks out for me.
Then, on the flip side, you just never know when your presence in another’s life will be just what they need at that moment. Those moments are just as awe-inspiring, they serve to give you confidence, and to let you know all of the struggling you’ve done to get to a better place can have value, not only for you, but also for others who are struggling and searching for answers.
Sometimes all that is needed is someone to cry with. Never underestimate the power of sharing tears and letting down your guard to show compassion. It means a lot no matter which end you are on.
One morning last week, I got up at 5:30 to leave the house in order to drive (an hour and a half) to Grand Rapids for an appointment with the Morton Building people to talk about some barn improvements I’m looking to make to our pole barn. The gentleman who handles our area of Minnesota seemed very nice via our email conversation, and upon meeting him I could tell he was very eager to accommodate my hearing loss, which I had made him aware of through our Internet correspondence.
Morton Man and I walked to his office and got down to the business of barn brainstorming. During our meeting, there came a point when we needed to go out into the warehouse to look at some of the applications we were discussing. Talking while walking came into play, and, of course, when someone is trying to show you something and talk at the same time they tend to point at what they’re talking about. Pointing also means they tend to look at what they are pointing at, which is a train wreck for a lipreader, so the Morton Man kept apologizing for looking away as he pointed. I told him it was okay, as there is a learning curve, he would eventually get it.
The Morton Man paused, and I could clearly see he was collecting himself to tell me something personal. When he spoke, he told me our interaction was actually very good training for him because he had a 4 year-old granddaughter with a conductive hearing loss. As he shared her story, it was clear how concerned he and his family were for her and how emotional it was to see their beloved girl struggle to hear. This began a 15 minute discussion about hearing loss, how really debilitating it can be, but also how manageable it can become if you have the right attitude and tools. We talked at length about the information that was out there and how to go about finding that information, and I shared some of my own experiences with him, telling him how hearing loss does threaten to take much from you, but it can’t take more than you let it. At one point he actually broke down and cried and had to collect himself before he continued speaking. I instinctively gave him a hug and let him know that it was okay to cry, as hearing loss is very upsetting. Tears are common and very appropriate.
As we walked back to the office and began again talking about my barn, the Morton Man paused once more to say, “I have kind of a strange request… my daughter’s office is just a couple of miles down the street and I think it would be beneficial for her to talk to you and to see someone who is deaf and who handles it so well.”
I told the Morton Man, “Sure, I’d be glad to stop in and meet your daughter. We can exchange contact information and I can share some resources with her that might help her deal with her daughter’s ongoing hearing loss.”
Our meeting on barn matters concluded and I followed Morton Man to his daughter’s office. The daughter and I had a very similar conversation as the one I had had with her dad, as he looked on. I repeated some of the same information that I had given him and there were about three instances where the daughter teared up and had to compose herself, which, of course, made her dad break down. I held her hand or hugged her each time and then went over and hugged her dad. It came in handy that I come from a family of contagious criers… I’m pretty comfortable with tears.
We all exchanged information and I promised to email the daughter with some research results on groups she might join for parents of children with hearing loss and other information I thought she might find helpful.
The final thought I left the Morton Man and his daughter with was this: Make sure you instill in your granddaughter/daughter that there isn’t anything she can’t do because of her hearing loss. And when you come up against people who might discourage your girl from participating in something because she can’t hear, move on to the next person, and the next until you find that one person who says, “Let’s see what you can do.” If she knows she can do anything, believes it, and then acts upon it, it becomes true… she’ll be okay.
And their little girl will be okay… it won’t be easy, there will be challenges, but she’ll learn some good things along the way to carry into who she becomes as an adult.
Yes, you can be capable, confident, strong, and deaf. I’ve learned that from people who have crossed my path at the exact moment I needed them, saying “You’re not alone, you’ll be okay.” I’m thankful for the opportunity to pay it forward on days when I’m able to be what I want the world to see.
I’m teaching my granddaughter how to talk to me… I’ve been doing it from the beginning, but now that she’s older, and getting ready to start school, I’m seeing the benefits of it more.
Yesterday she spoke to me from the backseat of the car, so naturally I looked at her in the rearview mirror.As she held up a flashlight that Pops had given her, she said “This flashlight turns ________.”
I saw her lips move, but just couldn’t get that last word, so my brain ran through the list of possibilities and nothing was right.I finally got it!GREEN.“This flashlight turns green.”
I then reminded her that she could give me more information, if I’m not getting it the first time, and that a better way might have been to say, “This flashlight turns the color green.”
She thought about it.
Later, I asked her what she had had to eat that day, as it was getting late and neither of us had eaten lunch.She told me she had eaten “One egg, three slices of bacon, and a ________.”
Again, I wasn’t getting it.The word on her lips looked similar to bagel, but that wasn’t it.And just like that, she said “I had a mango, it’s a piece of fruit.”, and I got it.
Sometimes getting difficult words on the lips is that simple… use more describing words.
Of course, it occurs to me if we knew more sign language or could cue speech my granddaughter could give me additional clues. You might see pictures of my granddaughter’s hands in a future post. 🙂
I recently watched American Masters on PBS, Jacques Pépin: The Art of Craft. La Technique: An Illustrated Guide to the Fundamental Techniques of Cooking was Mr. Pépin’s first book and contained no recipes. While other well-known chefs were introducing people to a world around food and the dishes themselves, Jacques Pépin recognized the value in deconstructing how it was done—the basics of cooking—so that people would feel empowered. It occurred to me that that’s what Chelle and I are trying to do with lipreading—deconstructing how it’s done in order to empower.
Michele: Before delving into the fundamentals and technical aspects of lipreading (Chelle will do that in her next article in the series), it’s important to set the stage for success.
Chelle: There is a mystery surrounding lipreading and there shouldn’t be. Not too long ago that it dawned on me how much went into lipreading and it isn’t just seeing lip shapes; it’s a holistic process.
Take charge, exert control over how your hearing loss fits into your life.
Michele: Lipreading takes a lot of work and concentration. It also requires you to be comfortable with making others aware of your needs, and to be prepared to handle how the world reacts to you and how you react to unforeseen situations and mishaps. The more relaxed you remain, the better your ability; the more comfortable you make yourself and others with hearing loss.
I’m a frequent traveler. I’m also out and about doing many things solo, which means I often take charge in making others aware of my hearing loss. When I inform successfully, in situations that are seen as challenging for those who hear differently, I’m often complimented.
“You’re really impressive,” said a flight attendant after I informed her of my needs as I boarded a flight from Munich to Atlanta alone.
This made me curious and led to my polling people when they compliment me to get to the bottom of why something so ordinary becomes extraordinary when done solo by someone with hearing loss or deafness? The answer I most often hear is that a lot of people with hearing loss are timid and reluctant to mention their hearing loss until they are forced to by an awkward moment. We have to remember, those awkward and uncomfortable moments are the same for the hearing people who are on the other end of them, and they prove memorable; which often leaves people with the wrong impression of our entire group.
Chelle: People with hearing loss tend to be meek/timid, we are afraid to bother people. Maybe we’ve heard “never mind”, “I’ll tell you later” or “it wasn’t important” too often over the years. Or, “I SAID….”, then practically yelling at us or over exaggerated speech.. All of this has happened to me and after many years managed to push past all that to make things work better for me. It’s hard but I guarantee it will get easier.
Michele: The other feedback I get is that most people with hearing loss/deafness do not travel, eat out, or participate in certain activities and events alone. Thus, those of us who do, seem impressive. Granted, some wouldn’t do those things alone even if they could hear, but I do think it’s accurate that a large percentage of people with hearing loss tend to take someone along for situations where they can foresee communication challenges or that might prove uncomfortable.
Chelle: I started to enjoy eating out alone when my kids were little. (I had a hearing loss but not as much as I have now.) It was a treat to eat out alone and have someone wait on me for a change. As my hearing loss worsened, I struggled with some waitresses/waiters more than others but I was determined to keep this treat to myself alive so I made it work. I also travel solo and make it work just like I do in restaurants. I’m not sure I’ve been complimented by hearies but I do get compliments from other hard of hearing people for being brave.
Michele: In my opinion, the fact that we are seen as “timid” and opposed to doing things solo demonstrates exactly what’s missing from the process of the diagnosis of hearing loss, the audiological experience (hearing aids and cochlear implants), through what comes after—living and adjusting to life with hearing loss. No one teaches you how to actually get out there and do it, and that’s also true for lipreading.
Find ways to inform comfortably and confidently.
Practice informing. This is an area worthy of much effort, because when you come across as in control and confident it sets the tone for how all of your interaction will go—if you’re not comfortable with your hearing loss yourself, then others won’t be either.
Chelle: Be in charge of your hearing loss, don’t let your hearing loss be in charge of you.
Michele: I’ve pretty much given up feeling like I need to label myself. Labels are confusing (everyone has their own idea about what “hearing impaired”, “hard of hearing”, and other labels mean) and they don’t work very well, so I’ve gotten into the habit of simply putting out there what I need someone to know about me, “I need to see you speak, I’m a lipreader.” There are many variations of informing, depending on the situation, and what works for you, in any given situation, is the right way to do it. Others have their own right way.
Chelle: I played around with labels for a long time. For many years I told people I was hard of hearing. Hearing people think that just means talk louder and that’s what it thought it meant too. After educating myself about high frequency hearing loss I understood why I hear the way I do, then I could explain it to others…but that is a lengthy conversation to have with a waiter or cashier. That’s when I started experimenting with other labels. First I tried, “I’m deaf” thinking they should somehow know that means lipreading but that didn’t work because I’m talking and I don’t use sign language. I had people signing at me and I’m not fluent. So I changed it to “I lipread,” which has had the most success so I stuck to it. Lately I added “I lipread, I hear enough to know someone is talking but I need to see you to hear you.” That feels comfortable to me. They know I can sort of hear which is obvious by the way I look up when I hear a voice but they know I can’t hear well enough to understand without seeing them.
Putting people at ease: Practice until you find what gets the best results.
Michele: Most situations dictate that others will need to know about my hearing loss right off the bat. By taking charge and informing right away I’m heading off any problems, and my hearing loss becomes a non-issue, if I do a good job at getting across what people need to know.
Figuring out what works for you will come by trial and error, so practice daily and start with something small that you do frequently. Think about that situation, where you get tripped up or have problems; then try coming up with a solution. Note what’s effective, and toss out what isn’t.
Below are some of the phrases I use that work well, and people appreciate when I let them know what I need. As I said earlier, confusing exchanges are uncomfortable for both parties. If you work informing into everyday interactions it really does put those on the receiving end at ease.
The first step is usually exchanging pleasantries, which most of us can do just fine if we initiate the exchange. Note: Once you’ve let the person know you have a hearing loss and read lips, they often apologize. My response to “sorry” is usually, “No need to apologize,” said with a big smile.
Grocery store: “I’m not going to hear you if you speak to me when I’m not looking at you, I’m a lipreader,” said as I pause from unloading my cart. Ordering at or checking in at a counter: Inevitably the person will be looking down at their register or computer screen. “When you’re looking down it’s hard for me to read your lips. If you could look at me while you’re speaking, that would really help me out. Thanks.” Ordering in a restaurant: Just recently I ordered in a restaurant and the server was in training, so I wanted to put him at ease; so I said, “I’m going to tell you upfront, you’re facial hair is going to wreck my lipreading, but I won’t make you shave. You might have to write to me if I get stuck, but we’ll figure it out.” The first sentence got a laugh. Shopping: Most of the time I go the nearest floor salesperson upon entering the store. I let that person know that I read lips and if they speak to me from across the room or when I’m not looking I’m not going to respond. Because, inevitably, they will speak to me from afar and I won’t see them. Dressing Room: The salesperson almost always will attempt to talk to you through the closed door, while you are in the dressing room. So, before I enter I tell the person that I read lips and speaking to me through the door is going to be futile. Boarding an airplane: I always pre-board and the first flight attendant I see as I board gets my little speech. “Hi, how are you this morning? I need you to know that I’m deaf. I travel frequently, so I know the drill and there’s nothing special that I need, other than your getting my attention before you speak to me—you can just tap me on the arm—I’m a pretty good lipreader, but I won’t hear any emergency announcements.” Also, when I’m seated, I let my seat mates know that if they need my attention to just tap me on the arm, because I likely won’t hear them if I’m not looking at them.
I could continue, but you get the picture… simply saying what’s true and asking for what you need, framed as just part of the conversation, alleviates having to label (I do use “deaf” when I feel it’s necessary) yourself and that makes you come across as being very comfortable with your hearing loss.
Chelle: People can’t see hearing loss so we have to be upfront about it or we may appear as stuck-up, slow, oblivious, etc. We are giving people the wrong impression if we try to hide it (by bluffing too). We are all intelligent people with different communication needs and if we all addressed it, the stigma would disappear.
Michele: Sometimes it’s not possible to find someone to inform right away, and if the other person speaks first and I’ve not responded because I didn’t see them, once I’m aware that they were speaking to me, I say “I wasn’t ignoring you, I read lips… if I can’t see you, I can’t hear you.” Likely the person will apologize once they know you can’t hear; I then respond, “That’s okay, you didn’t know, no apology needed.”
The only time I don’t let people off the hook so easily is if they’ve been rude. I let them have their moment of humility and then I let them know that it’s okay, but I do ask them to please be mindful of next person they encounter that doesn’t respond as expected, and try to think further as to why that person might not respond before jumping to a negative conclusion.
Chelle: I have encountered a few rude people and my automatic reaction was to be rude right back, which isn’t the best way, though it worked out. It’s not good to use anger but at times anger made my point faster. I usually regret it, knowing I could have handled it differently.
Example:I was standing in at the grocery stand with a 6 pack of beer on the runway and looked down at my purse to get the wallet out when the cashier began to check me out. In Utah if a person looks under 50 years old they ask to see ID and it’s also typical for cashiers to ask “how are you?” What I heard: “How….you?” I looked up and took a guess, “Did you ask how old I am?” She put her hand on her hip, “That’s what I said!” I came right back at her telling her I’m hard of hearing, I couldn’t hear her while looking down and I wasn’t sure if she asked me how was I or how old am I. She shouldn’t automatically assume everyone could hear. I handed her my ID and she started apologizing. When we got out of the store my son told me he thought I was going to jump over the counter and get in her face. That’s when I knew I handled it badly and could have done better. Since then I have held my tongue and handled those kinds of situations with more tact.
Composure: If you lose yours, you temporarily lose your ability to lipread.
Michele: It’s worth noting, all of the skill in the world is useless if you let yourself lose your composure or are thrown by something unforeseen. In my younger years I did this a lot, mostly because I didn’t take the initiative to inform, or I tried to fake my way through a situation and the bottom would drop out. Living that way kept me on pins and needles, waiting for things to go wrong. I constantly worried before an event; then spent the entire time nervous, worried that someone would speak to me and I wouldn’t understand them. I’m here to tell you that you can reach a point where you don’t have to live like that any longer, but it takes effectively informing and not letting unforeseen happenings push you to the point that they wreck your skills.
Chelle: The more desperate I become to hear or lipread, the harder it gets. Events take thinking ahead and planning for what might be needed. When I put in as much thought, if not more, into hearing as well, as what I’m going to wear it usually turns out better. Sometimes I still bomb but I take it as an opportunity to do it better next time…what can I do to make it more enjoyable next time? Was I upfront about my communication needs? If not, how can I address it next time? As I meet people at large social events I might need to tell people over and over again that I use lipreading and face me which gets tiring but it does help. If someone new points to me and says, “She’s stuck up,” to someone who already knows I have a hearing loss, then they will correct the perception.
Practice, and putting yourself out there frequently is invaluable. The thing I recommend most is experimenting and exposing yourself to the very scenarios that trip you up. And, it is important to “go it alone”, even if it scares you… there’s nothing more empowering than learning to rely solely on yourself. There are some things that can only be learned on your own.
One last thing…
Why others need to be aware that you’re reading their lips.
Lipreaders can be perceived as weird. Back when I wasn’t informing much about my hearing loss (I really thought it wasn’t necessary at that time), many people could tell there was something a little off about me, but couldn’t quite put their finger on it. I’d get odd looks—a wide-eyed, caged animal look—from those hyper-aware that I was intently focused on watching them speak. They’d freak out even more when I would move closer to see their lips better, sometimes even taking a step back to put some distance between us.
Example:Our new neighbors moved in next door and the husband came over to borrow a tool. I answered the door, invited him in, and introduced myself. I could tell I was freaking the guy out because I was so close and focusing on his lips so intently, but I didn’t mention that I was a lipreader. After meeting both the husband and wife together, and getting to know them a little better, I mentioned to the husband that I noticed how much I freaked him out when we first met, and he laughed. He said he wasn’t sure what to think, but that after he knew that I had a hearing loss it made sense. Had I told him from the get-go that I had a hearing loss and read lips he wouldn’t have spent weeks thinking I was weird.
Chelle: That’s true, people see our focus, we aren’t looking them in eye so much as the mouth. Someone once noticed I was staring at their mouth and thought maybe they had something stuck in their teeth. Since then I sometimes use it as humor to start conversations, “No there’s nothing in your teeth, I use lipreading.” Other times I have the concentration look on my face which can interpreted as a ‘mean’ look, like I might be mad. So when I introduce myself to a group of new people I let them know this is my concentration look (and I show them) and I’m not angry.
Setting the stage for successful lipreading requires you to take charge, inform effectively, retain your composure, and to put people at ease. If this doesn’t come naturally to you, then it’s going to take some practice and effort, but change will come. We promise!