SayWhatClub

5 Points of Volunteering

By Chelle Wyatt

Finding your people.

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 (not much hearing involved with cleaning), and I had nowhere else to go so yes, why not give of my time.

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.

 

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.

 

 

The ABC’s of Living with Hearing Loss

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.The international sign for deaf and hard of hearing 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.)