Ah, beloved – it’s been eight weeks, since I wrote my first article about certain effects of mask-wearing on communication with the hard of hearing; time to log some more ideas and experiences.
All praise and glory to God for healing and protection during this time as ever; prayers for the world (leaders and regular folks), and realization of our need to turn back to God. May we be humble and repentant in these days.
Shout out to essential workers (this includes everyone, even those not “working”), former CDC colleagues (whom I’m not ripping every time I post something related to its’ institutional failures), my new and old buds at EPA, and beloved with hearing loss and other disabilities. I’m thankful for you all.
Thankful I could contribute to my country’s work in the professional realm too. A CDC friend reached out to me in April, because s/he knew CDC’s renowned hearing loss communications expert (me!) had only recently left to seek better working conditions. S/he knew who to call, so I gave my “free” expertise to inform CDC’s phone contact tracing, considering people with hearing loss, Deaf, and late deafened, and various communication possibilities (paid for by my trials, but glad to finally be effective for my tribe!).
We have to LIVE during this pandemic, so I’ve gone about my business, practicing the safety and health principles I know and seeking to learn and share knowledge. I’ve traveled safely and with purpose and sought to keep my own health paramount. That old adage: “put on your mask first, before putting one on another” is something to take to heart in every situation, not just when flying or in a pandemic.
Also, living among multitudes of masked others, I’ve had to pray daily for more grace, patience, and love – both to give and receive. Say and DO Shema! Love the Lord Your God… and neighbor as self, Ange!
So thankful for these people, because they helped me learn – and teach them, for those who’d listen long enough for a nugget of communication improvement we might use in the future or with another:
– For a postal worker’s kind rescue from a fearful coworker’s refusal to write down instructions, as well as rescue from the scene created by the fearful coworker’s “able-ist” reactions to my need. All I wanted to do was get my mail off, not gain ADA/Rehab Act lawsuit fodder that day. Also, I’m thankful for the “fearful” postal worker creating the opportunity to know she needs prayer!
– For the young lady at REI who re-rung my order to attach to my membership number, graciously receiving my gentle feedback that next time, she should ensure the hard of hearing customer understands her questions (such as, for my member number, which she asked once, but I missed, and that would not have given me credit for the purchase under my membership).
– For many who realize they can safely stand 6 or 10 feet away (outside or when other barriers are present) and pull down their mask for a moment to let me lipread them. (That’s the range of a hearing aid – 6 to 10 feet – but we who wear them, and the kind people who “get it” know that a hearing aid has so much more power when a user’s eyes are focused on faces and lips.)
– For another young lady named Katie (mom’s name!) at a business, who learned a bit about hard of hearing mask-readers after I called her Kayla and she’d assured me that I could hear her… Getting her name wrong was the clincher! I helped her realize how disrespectful she was by challenging me, and asked her to do better by giving the next customer the benefit of doubt.
– For a security guard who reminded me to respond faster to “attitudes” behind masks, especially when mask-owner is armed. (I stayed outside a farmer’s market at closing, drinking my $1-decaf as I’d done another day, but this guard had a different attitude than the other… with his soft voice, I tried to hear him (as I thought he was asking about my welfare), until he yelled, “Leave!”
– For a Sport Clips hair stylist who cut my hair after 5 months (a pandemic-in-its-own-right), using Ava (ava.me), my trusty speech-to-text app, so we could communicate behind our masks. Here’s me and my new “do” thanks to her. (Note: I asked for a socially-distanced photo; she declined.) Nonetheless, I was happy I could actually stand looking in the mirror at myself to take this selfie!
So there you have it; lessons, love, and learning, and a bit of leaving, when necessary. Love each other peeps, regardless of our ideologies, shades of skin, cultures, abilities and/or any absences thereof. We will embrace and shake and hold each other’s hands when this thing is over or when each individual is ready. In the meantime, fight institutional and social injustice. Use your voice to speak out against it. Just don’t do violence.
Angie (Fugo) Fuoco
“The views and opinions expressed by the author does not necessarily represent the views of the SayWhatclub administrators and/or subscribers, and are provided solely for informational and educational purposes. The SayWhatclub is not responsible and does not verify for accuracy any of the information provided.”
Hearing loss can be lonely. The world feels against you, sometimes your family too. It’s a deep, dark pit of quiet (and tinnitus). If you’re lucky, you wander across a support group like the SayWhatClub and start to feel a little less like a freak. You begin feeling at home with a bunch of new friends, making meaningful connections.
After another big hearing drop in 2009, I re-joined the SayWhatClub. Six months after being on the list, someone asked me to volunteer. I hadn’t thought about it, but why not? It wasn’t like I had anything else going on. I had just quit doing hair after 20 something years because I was deaf in noise. My self-confidence was at an all time low. I was cleaning a few houses and offices (not much hearing involved with cleaning), and I had nowhere else to go so yes, why not give of my time. Most of the offices I cleaned were aided by phs who helped the employees in the offices to stay clean and healthy.
Point 1: Volunteering opens up other worlds, the 2nd phase of leaving isolation behind.
I became a list representative for a SWC email list. I was introduced to another part of the organization, meeting more who were hard of hearing and gaining new friends. Friends were important because I’d already lost a few because of my hearing loss (I couldn’t “chat” endlessly on the phone anymore). I appreciated my fellow volunteers just as much as I did the others on my email list and over time, one of those volunteers became a very good, dear friend. SWC became my safe place for communication, it’s a written world with no hearing involved.
Point 2: It kept me busy and stopped my negative thinking cycle.
Being a list rep gave me back some of the responsibility I had been missing. I popped into email often to make sure the list was moving along smoothly. I welcomed new people to the list, trying to make sure their questions were answered hoping to pass on the same sense of home I felt. Occasionally I helped settle differences of opinion, in the spirit of teamwork. It kept me busy and kept my mind off my own troubles.
When the SayWhatClub held a convention in town, I volunteered for that too. I enjoyed being a part of building the con and putting faces to names, gathering more friends in the hearing loss world.
Point 3: Volunteering for SWC gave my own hearing loss a sense of purpose.
Over time, my hearing loss became less of a burden and started to feel like experience to share; on the email list, in the List Rep committee, conventions and writing on the SWC blog. I became a professional full time volunteer, I joked, as I became the List Rep chair. I was reaching out more into the hearing loss world for convention purposes, meeting more people. My self-confidence built back up. I was far from isolated and my hearing loss was asset in this world.
Point 4: Learn new skills while volunteering.
While stepping into my roles, other volunteers with experience supported me along the way. I wasn’t sure about being List Rep chair but the former chair was on hand to answer questions and offer advice when needed. The same with the convention committee, I knew nothing coming in but had the will to learn. I learned to reach out further into the hearing loss world, looking for guest speakers and sponsors. It was all valuable experience and I learned to be a leader again.
Point 5: It looks good on the resume.
A local part-time job opened at the state Deaf and Hard of Hearing Center as a Hard of Hearing Assistant. The job required teaching classes and giving presentations on hearing loss. I almost didn’t apply for a few reasons. I thrived in the online world. Also, I was still trying to find my way back into doing hair, clinging to my old life, should I give up on that? What the heck I decided, maybe I could do both hair and hearing loss part time so I applied.
Which required writing a resume, the first in a long, long time. Adding information to the resume made me realize I had more experience than I thought, thanks to SWC. I learned I could organize events. During the two years I was off from doing hair, I built new skills and worked well with others. Because I hadn’t been idle, I got the job. I worked part time for 5 years, and in January 2018, it became a full time position.
The hearing loss world gave me a place to belong. I found my tribe, across the United States and right here in Utah. I never would have pictured myself ‘here’ nine years ago when I was struggling after another big drop in hearing. And ‘here I am in a whole new life! I have let go of doing hair almost entirely. Now I embrace the hearing loss community. This is where I belong, and SWC helped me get there.
I encourage others to volunteer, especially if you’re in that pit of isolation. The
SayWhatClub emphasizes the benefits of volunteering in its Mission Statement. We understand that helping others reduces feelings of isolation, frustration and despair, while enhancing feelings of self-concept and optimism. Open yourself up, and see where it leads. Other SWC volunteers will support you in learning new skills. What do you want to learn? Where might you go? The
re’s lots of opportunity in SWC.
Some areas SWC needs volunteer help
The SWC website committee needs people to keep the webpage current by checking links and editing pages.
Help the Hospitality Committee welcome new people into SWC who inquire on the website.
The List Representative Committee could use help on the Facebook groups, and if you’re on an email list already, inquire if they might need help. Two of the lists are looking for new List Representatives.
The Social Media Committee is looking for people to help with the main SWC Facebook page, making memes for SWC, writing on the blog, and would love to have someone make our Twitter account active again.
Remember no experience required, just a willingness to learn.
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
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.