The People You Meet at Our Conventions: Liza Sylvestre

Our 2018 SayWhatClub (SWC) convention was held in St. Paul, MN last October and we had a variety of workshops  which our members. One such workshop was led by Liza Sylvestre, an artist who turns her hearing loss into art. She first caught the SayWhatClub’s attention with her video titled: _a_i_i_old you a__ory in a language I _an_ear which we posted to our main Facebook page. She tells a story, on video, sharing about how she hears a conversation with all the high-frequency sounds of speech missing. High-frequency hearing loss is the most common type of hearing loss, which makes all conversations a constant puzzle of filling in the blanks. Liza lives in Minnesota where she has a grant from the Minnesota State Arts board to explore communication in the form of art.

We are thankful to Listen Technologies for sponsoring Liza’s workshop. Listen Tech has been an annual contributor to the SWC conventions since 2012 and continues to support the hearing loss community in a variety of ways, especially in continuing to advocate for quality assistive listening systems in venues. Listen Tech took an interest in Liza’s workshop because she makes communication barriers visual.


In one of her earlier exhibits titled, “Communication,” Liza had two audio/visual components and one real-time audio experience to share. In one part of the exhibit, Liza is on one screen having a conversation with another person on the wall opposite, the other person is blurred, and that half of the conversation is garbled.

At this exhibit, she also made space with a table to communicate with attendees called: the Equalizer Room. They would sit in a room with her — a room similar to a sound-proof booth for hearing tests — and wear headphones. The headphones were rigged to have a ‘hearing loss’ or a ‘normal hearing’ experience with the push of a button putting people on an ‘equal’ level of communication. She took note of reactions from the guests sitting across from her as they were bluffing during conversation or getting angry and upset. Hearing loss is not easy.

The third part of the exhibit was called “The Movement Centric Language”. Liza knows sign language but doesn’t have anyone in her life who uses it, most people in her life are hearing. So she created her own signs, titling some (without the sounds she can’t hear) and leaving others blank for people to think about. “I like this idea of revealing things but then also hiding them at the same time. Which, to me, is akin to what it’s like to be out in the world with a disability.”

What is language?

She takes her experiences and “turns them inside out” so people have a better idea of what hearing loss is like. Her goal is to, “Get people to ask what is language? What’s is the difference between written and spoken language?”

Liza showed us what watching a movie is like without captions for those who are Deaf and Hard of Hearing. Even if we are good at lip-reading, camera angles aren’t always ideal for it. Distance makes a difference, if it’s not full on closeup, we strain to see the lips. Are there mustaches? That too creates a barrier. If we’re lucky, we can catch words here and there with faulty hearing but as Liza shows, we can’t get much of the story. Click here to watch the movie, from the hearing loss side, titled “Captioned.” If you’re hearing, maybe turn the sound way down, if you’re hard of hearing you know exactly what it’s like.

“Standing in a Room Without Sound” is another video giving us a visual of what barriers are involved with hearing loss. Liza is reciting some of her own writing with most of her face blacked out, the only visual we have is a circle which travels around on her face; lips, eyes, nose. Over the years she’s learned that people are uncomfortable when she focuses on lips only so she moves her line of sight around on different parts of their face.

Liza talked about other exhibits she’s created using light, darkness, visual and obstacles in communication. She had people come up to her and tell her, “Let’s get you an ASL interpreter or captioner” which upsets her because that is NOT the point of her art. “The point of the project was to get at how the underlying design of things, which is included in how we communicate, fails so many people who have disabilities,” she explained. However, when people try to fix it, she takes it as a sign that they are uncomfortable and that her art is successful in that regard.

sensory loss

Over their summer, she worked some sensory loss scientists through the Center of Applied and Transitional Sensory Science out of the University of Minnesota. At the time of the SWC convention, they were in the midst of working on the upcoming Sensory Loss and Art Symposium. The people she worked with primarily study the loss of sight and hearing but also a few other sensory losses. They work on technology for us, such as a cochlear implant like device that will work with the brain stem instead of the cochlea. Only a few of these people had a sensory loss themselves so she wanted to build a bridge to help them understand these losses better. She set up a museum tour that included common obstacles to communication and those with other disabilities, then she made sure each group on the tour had someone with sensory loss.

That’s where this post will leave off because another SayWhatClub member was a part of that symposium and will share her experiences soon. We enjoyed Liza’s presentation and appreciate what she’s doing to make hearing loss better understood. Thanks again to Listen Tech for sponsoring this wonderful workshop. Stay tuned for another post.


about the author:

Chelle Wyatt started to lose her hearing at around 14 years old, a little at a time. When she was 18, tinnitus struck and she began wearing hearing aids at 23 years old. Her hearing loss has been progressive, with a few big drops over the years. She found support in the SayWhatClub in the late 90s after one such drop and learned to live better with her hearing loss. Another big drop in hearing sent her back to the SayWhatClub again in 2009. During that time she also found local support in Salt Lake City, UT, and started attending classes through the state Deaf and Hard of Hearing center where she began volunteering which led her to a part-time job at the center and then a full-time job as Hard of Hearing Specialist. She credits her volunteer work with the SayWhatClub in giving her the experience necessary in landing her full-time job with the state.



Everybody Loses Their Hearing

What? You heard that right.

We won’t get too existential here, but it is simply a part of life that we age. And, as we age, the many different processes of our body slow down, wear out, and deteriorate. The same goes for our sense of hearing. You can see it in the numbers: hearing loss is currently the third most common physical condition in the United States, following heart disease and arthritis.

While some 48 million Americans, or 20% of the population, have a hearing loss, the bulk of people who experience this condition are older than 65. Approximately one in three people over 65 and 50% of people over 75 experience some degree of hearing loss.

With the understanding that everyone loses their hearing, we take a look at presbycusis (age-related hearing loss), how hearing loss and brain function are related, and why it is important to take an annual hearing test – no matter how young you are.


Understanding Presbycusis

Presbycusis, or age-related hearing loss, is a form of sensorineural hearing loss. Sensorineural hearing loss is one of the three main types of hearing loss. Deep inside your inner ear, there are several thousand tiny inner hair cells. These cells are responsible for translating sound waves into neural signals, and then sending these signals to your brain to be registered as sound.

Presbycusis – and sensorineural hearing loss – occurs when structures of the inner ear deteriorate or when there is damage to inner ear hair cells (which do not regenerate once they have died). Presbycusis occurs with the natural process of aging: inner ear hair cells naturally deteriorate and do not regenerate with presbycusis. As a result, sound signals may be muddled and are not sent to the brain in an efficient and clear manner.

Unlike other forms of hearing loss, presbycusis occurs naturally and gradually over time. According to Dr. Justin S. Golub, presbycusis is often undiagnosed and undertreated, with under 20% of people receiving treatment for age-related hearing loss. Even more distressing is that “this statistic has not changed in over 40 years,” according to Dr. Golub.

If left untreated for a long period of time, presbycusis could lead to other issues that affect different areas of your life and overall well-being.


Consequences of Untreated Age-Related Hearing Loss

As an invisible condition, hearing loss often goes untreated. Age-related hearing loss, in particular, goes untreated simply because the symptoms are often relegated to the idiosyncrasies of older people. When hearing loss is “just a part of growing old,” there isn’t much motivation to do anything about it.

Unfortunately, if left untreated, age-related hearing loss (and other kinds too) could lead to a number of negative consequences in different parts of your life. People with untreated hearing loss tend to withdraw socially, as communication becomes challenging. Rather than going through the awkward motions of asking people to repeat themselves or to please turn up the volume, people with untreated hearing loss may end up avoiding social gatherings altogether. This social isolation becomes a risk factor of developing dementia. Coincidentally, untreated hearing loss is also a risk factor for developing dementia.

Numerous studies from Johns Hopkins University have found links between untreated hearing loss and a higher risk for developing dementia. When the brain struggles to make sense of sound, its cognitive load is heavier and thus detracts from the brain’s focus on other functions, such as memory or concentration.  Over time, this heavier cognitive load to lead to dementia.


Schedule an Annual Hearing Test

Indeed, the signs of hearing loss are subtle and often, hearing loss develops gradually, which means that we find ways to accommodate our diminishing hearing abilities. With the understanding that everyone loses their hearing, we counter with the fact that hearing loss is treatable.

Treating hearing loss is a simple way to restore your abilities and reconnect yourself to your loved ones and the world around you. It is recommended that people schedule annual hearing tests at the age of 50. If you are younger than 50, it wouldn’t hurt to take an annual hearing test anyway – people of all ages experience hearing loss.

The Hearing Loss Association of America estimates that people wait an average of seven years from the time they first notice changes in their hearing to the time they decide to seek treatment for hearing loss. By scheduling an annual hearing test, you are committing to your overall health and well-being at every age.

About our guest writer Gabe Nelson

Gabriel Nelson is a man of 31 years old. He is the kind of guy that loves to watch superhero movies, to read Harry Potter, and play video games. Gabe enjoys freelance content writing occasionally and tends to write about his passions. Gabriel also loves water, streams, brooks, lakes and oceans, which is probably due to once being a crab fisherman in Alaska for a couple of years.


From the President

Don DippnerFrom the President’s Desk

Neighbors helping neighbors.    It’s what you did in my day.

I grew up in the heart of the Pennsylvania Dutch County in the late 50’s in the small rural town of Paradise, Pennsylvania.neighbors helping neighbors

Our main claim to fame was the founder of Park Seed Company, George Watt Park, who ran his seed business from 1902 to around 1920 in what was then LaPark and is now Paradise, Pennsylvania.

After the seed mill was destroyed in a fire around 1920 the seed business was eventually relocated to Greenwood, SC where it continues to operate to this day.

The three story Park Mansion is all that remains of the Park Empire in Paradise, Pennsylvania.

I grew up on 25 LaPark Avenue just a short distance from the Park Mansion.  In fact, Park Seed employees built the six homes on LaPark Avenue.   Each 2 story A-frame home was built the same with a kitchen area and living room on the first floor and 3 bedrooms on the second floor.  We didn’t have a well but a cistern that collected rainwater and a hand pump above the cistern to draw water which we used for cooking, cleaning, and bathing. All the homes had an outhouse in the back as indoor bathrooms didn’t become popular until after the 1930’s; I was 11 years old when we had indoor plumbing installed.

We lived in an economically depressed neighborhood. We didn’t have much growing up but neither did our neighbors.  We all pulled together to help each other whenever we could.  We weren’t related by blood but we were related by location and circumstance.  We enjoyed each other’s company and made of the best of times we had together.

Today I find myself in a new neighborhood called the SayWhatClub®. My new neighborhood spreads across various states and around the globe.  I have made many wonderful friends in the SWC and continue to increase that great circle of friends every year.

Each and every year I am loving this new neighborhood even more.  Our hearing loss has brought us together and my SWC family means the world to me.

The SWC just celebrated its 20th Anniversary this past December and I want to do whatever I can to insure that we will be around for another 20 years.

Neighbors helping neighbors is still important in this day and age and especially with the SayWhatClub®.

We need your help in big ways and small ways to help us continue to reach out to others with hearing loss that haven’t heard about the SWC family but are searching for a connection to others that understand their challenges in today’s world.

Two of my favorite quotes are from Helen Keller (a deaf-blind American author and lecturer 1880 – 1968),

“I am only one, but still I am one.  I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.


Alone we can do so little; together we can do so much.”

It is my hope and desire that 2018 will be the year of accomplishments and it’s sure starting out that way!

  • The new web site is up and running and more and more people are finding out about the SayWhatClub® and what it can do for them.
  • We are fielding many requests for information about the SWC from our Web site.
  • Many people are reading our blog entries on the web site as well.
  • Quite a few first time attendees have registered to attend the 2018 SWC St. Paul Convention in August.
  • Our Board of Directors are putting in many volunteer hours to keep things running smoothly and efficiently.
  • Our Committees are reaching out to help current subscribers and potential subscribers who are looking to connect with an organization like the SayWhatClub® and finally found that connection.
  • Facebook has been a boom for people finding out about us.
    • SayWhatClub® Facebook Group is attracting more and more followers.
    • SayWhatClub® with Friends Group is adding followers each month.
    • SayWhatClub® Gen-Y is growing each month as well.
  • Our first Fundraiser in the fall was a huge success.
  • The fundraising team is developing tools and processes to help us be more effective and efficient.
  • Our board members are developing handbooks and online training sessions to help our all volunteer organization grow and develop.
  • We are developing tools and processes to help us be more effective and efficient.
  • We have started using collaboration software to help us work better as a team and be more effective and efficient.

We need YOUR help, please.

 Like many nonprofits, we are always in need of volunteers.

Please consider being a volunteer for the SayWhatClub® in big and small ways.

A volunteer is giving up the greatest commodity they have to offer, their personal time.

Why do people volunteer? People choose to volunteer for a variety of reasons. For some it offers the chance to give something back to the community or make a difference to the people around them. For others it provides an opportunity to develop new skills or build on existing experience and knowledge.

How does volunteer work benefit you?

  1. Gain confidence.
  2. Make a difference.
  3. Meet people. Volunteering can help you meet different kinds of people and make new friends.
  4. Be part of a community.
  5. Learn new skills.
  6. Take on a challenge.
  7. Have fun!

 How do I treat volunteers?

  1. Show respect. Arguably the most important aspect of managing volunteers happy is to show them respect.  Treat others the way you want them to treat you.  Lead by example.
  2. Communicate. In addition to email, we now have posts, chats, and are developing a learning library.
  3. Have an open door policy.  Please feel free to email me, Don Dippner, at: with your comments and concerns.  I will do my very best to respond to your email within 24-48 hours.
  4. Find common goals. We need to work together and help one another.
  5. Recognize achievement. I plan on doing my best to let you know your efforts are seen and are appreciated.  I want to let you know regularly that ALL of our committees and ALL of our volunteers are as asset to the SWC and highly valued.  Without YOU we would not have a SayWhatClub®.
  6. Build team spirit.  We are in this together and we will make great strides in the years ahead and we will also fall short in some of our endeavors, but I will never give up trying to improve and to learn from past mistakes.   I don’t believe in failure; I do believe in learning from what doesn’t work.
  7. Encourage development and training. We are working on a couple of different ways to help our volunteers know what is expected of them, teach them how to best carry out their duties, develop new and better ways, and have fun in the process.
  1. Accommodate.  I will work with you to help you make the best use of your volunteer time.  I understand that we all have lives outside of the SayWhatClub®, myself included, and it’s often a balancing act of finding time for yourself and your family and finding time for the SayWhatClub®.

In conclusion, “Neighbors helping Neighbors” has always been a part of my life.  I don’t know how not to help others when I can do so.   We have a lot of work ahead of us to keep the SayWhatClub® going strong for another 20 years and more.  I know in my heart we can work together, grow together, and help one another.  Reaching out and helping others is why the SayWhatClub® was founded all those years ago.

Now I am asking you to join me and help me to reach countless others in the hearing loss community that are looking for a friend; someone who understands, someone who cares, and someone who will make a difference in the lives of others.

Are you that someone I am looking for? 

If so, please contact me at: sometime this week.


Thank you for your time,

Don Dippner

President, SayWhatClub®

We are an all-volunteer organization and have been around for over 20 years.

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