Categories
Accessibility Advocacy Captioning CART (live captioning) Communication Access Connections Education Hard of Hearing Hearing Loss Self Advocacy

Happy Anniversary!

Chelle: This is our 40th podcast! It’s been fun making them and seeing where they go. We’ve highlighted hearing loss and its related issues and strategies; spotlighted community members for inspiration, and will continue to do so.

I love the connections we’ve made. 

This Past Year

  • We hosted a free, monthly event called Talk About It Tuesday (TAIT) with human generated captions (CART) so everyone can participate.
  • We’ve met some good people through TAIT and got to meet one attendee in person thanks to our travels to and from the SayWhatClub convention.
  • We offered a free workshop before the holidays to help people Conquer Their Next Family Gathering.
  • We’ve also had free workshops on Family and Self Advocacy for May’s Better Hearing and Speech Month.
  • We tested sensitivity training for a business to clear up misconceptions about the Hard of Hearing. It was well received.
  • We’ve given free presentations for hearing loss support groups on how to request CART and self advocacy.
  • All our podcasts are free and accessible with captions, that’s a lot of work thanks to Julia. She makes sure all we do is accessible with captions. We want to lead the way with captions. 

Lipreading Concepts Class

We started the Lipreading Concepts classes this year (new classes starting next week) which has already helped several people be more proactive with their communication. This is the only thing we charge for so far. It is a minimal charge, $50 for 8 one-hour classes. Soon we’ll have a Patreon channel going with extras from our podcasts.

Next Year

Over the next year, I look forward to narrowing our focus down to self advocacy at a grassroots level. Teaching people how to communicate, how to get the accommodations they need. Reaching the Hard of Hearing as a whole to let them know there are a lot of accommodations available, and more of us need to request them so our communication needs are better known. 

The Funding Question

This question popped up more than a few times this last year, why are we an LLC instead of a nonprofit? Because we want to do it our way. We didn’t want a board telling us what to do. We also didn’t want to be boxed in by bylaws so we went the LLC way. Even in nonprofits there are membership fees, convention fees, fundraisers. We could have gone the nonprofit route, we have years of experience with nonprofits between us. We could have paid ourselves that way too. Being an LLC is going against the current grain but it isn’t all that different. 

We’ve bootstrapped the whole way through. We recently started some crowdfunding and some of you have already helped. Thank you! We want to go another year; then, another sharing what we have learned on our journeys so you don’t have to wait as long as we did to be more successful with hearing loss.

Happy Birthday to Us!

Michele: Can you believe it’s been a year?! Yes and no. Time is a great contradiction, passing slowly and at top speed all at once.

This past year has confirmed to us how hungry Hard of Hearing (HoH) people are for information that will help them live fully with hearing loss. We’ve helped people learn to be better self advocates and to find their confidence to speak up for themselves and their needs.

More work needed for HoH Accommodations

Speaking of needs, many have no idea what they need or what is available to them in the way of accommodation. Helping people with hearing loss define their needs has been a big part of what Chelle, Julia and I have focused on since last September.

At its heart, hearing loss is a communication barrier. Communication access, and the accommodations that provide it effectively, has been another big focus of ours. If the HoH want businesses and organizations that serve us to include us, the best way to educate them is to advocate and ask for what we need. I’ve been working hard on that in my own community in hospital and medical settings. I’ll be giving presentations on hospital communication access later this year.

Equal Access to CART

CART has been a big focus of Hearing Loss LIVE!, and that’s no surprise, as Julia is a captioner. With a profound hearing loss, and being a lifelong lipreader, CART is the most effective communication access accommodation for me and many others. We are working to help start a movement that will grow the CART industry—there is a shortage of CART providers—and to spread awareness among the HoH community, those who organize live events, and businesses. Many have no clue about how to request it or how to go about providing it for those of us who do not communicate via sign language. Quality, on-site, speech-to-text services should be available all across the country, not just in larger cities. We will continue to focus there, because over 95% of people with hearing loss use spoken language to communicate. Communication access keeps us connected! IT IS EVERYTHING!

“If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest” ― Daniel Webster

We are Going to Dig In

Julia: I am hoping this is one of many anniversaries to come. There is still so much work ahead of us and I’m ready to dig in and get more folks in the KNOW!

Whether you’re new to hearing loss or an old pro—or maybe you are still in denial—there is something here for you, your family, your friends and your place of business. In fact, I think everyone should get in the KNOW! Before they need to know. I cannot stress enough how this has improved everything about my journey as a hearing partner.

Our goal will always be to give back to our HoH community and their hearing partners as much as possible but we need your help.

We have many ways you can help us:

Patreon: Get a look at some of our unseen videos. There are hours and hours of hilarious outtakes, serious discussion about hearing loss, thoughts about podcasting and more. Monthly content starts at $3 a month. That’s only $36 dollars a year.

Buy me a Coffee: Buy one or all of us a coffee! Like a specific blog or podcast? Want us to take on a subject? Let us know. 

Join our Lipreading Concept Class: It’s only $50 dollars for eight weeks! This class is taught by Chelle, Michele and Julia. All three have years of experience with what lipreading is and what it is not. We believe the best way to take this class is online/in person, because there is always time to talk about current real life experiences, strategies and hearing loss. This class is built for hearing friends and family, too. Encourage them to get in the KNOW! about how lipreading and communication go hand in hand. Space is still available in all four of our classes starting September 7th. 

Lipreading Concepts Class in Video

We also have a recorded version of our Lipreading Concepts class.This is for those who aren’t quite ready for group settings. Also, this is a great gift to share with a hearing friend or family member to help them learn more about hearing loss and lipreading. 

Subscribe to our E-news: Our E Newsletter comes out twice a month. It’s chock-full of information and fun facts. It contains Zoom links for our events like Talk about it Tuesday. We share our newsletter list with no one.

Share a testimonial with us: Let us KNOW what Hearing Loss LIVE! means to you. Subscribe to all our content. And above all else: Share, Share Share. Share with your friends, your family, your support groups, your doctors, your coworkers and your employer. 

Let’s get everyone in the KNOW!

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.

Podcast Link

Watch our companion podcast on YouTube channel. Our podcasts available in audio format on BuzzSprout with a transcript. You can also find us on Spotify, iHeartRadio and other platforms.

Check out our first 3 podcasts & blogs:

  1. Introducing Hearing Loss LIVE!
  2. Finding Your Tribe
  3. You Don’t Know What You Don’t Know
Categories
Assistive Listening Device CART (live captioning) Cochlear Implants Communication Access Connections Hard of Hearing Hearing Loops & Telecoils Hearing Loss Personal advocacy Public Advocacy Self Advocacy Vocational Rehabilitation Services

Hearing Loss LIVE! Attends the SayWhatClub Convention

Let me give you a taste of a hearing loss convention. Julia and I went to the SayWhatClub (SWC) convention August 10th-13th in Nashville, Tennessee. We believe everyone should go to at least one hearing loss convention. You get to experience Hard of Hearing culture. What does that mean? 

Hard of Hearing Accommodations

You have the accommodation you need to understand everything that is said. They put in temporary hearing loops for those with telecoils in their hearing aids. (*Ask your audiologist to turn on the telecoil program before you go. Make sure it’s a dedicated telecoil program. About 70% of hearing aids have a telecoil.)  If you don’t have telecoils, it’s okay because there’s also a human providing live captioning as we go. (Called CART, Communication Access Real-time Translation.) Our human providing captions was Julia, who also sponsored some time through her CART business.

I helped to lay the hearing loop.

At conventions, you make connections with people. People who are more experienced and can answer all kinds of questions. If they don’t know, they know someone who can. Because most of the attendees are Hard of Hearing, we know how to talk to each other and people are patient with repeats. Knowing what it feels like being left out, they are usually careful to make sure everyone is included. 

Day 1

Conventions start with a welcome party. This is where you find old friends and make new friends. The SayWhatClub has a theme at their welcome party, this year they told everyone to wear a music t-shirt.  Somehow I missed the memo. Thankfully another attendee brought extra t-shirts and let me borrow one for the evening. 

I had a lot of fun with that shirt!

When the welcome party ends, we spread out to either the hotel bar or take on the city. Come on, we’re in Nashville so let’s explore! We found Printers Alley and a bar with a live band. It was loud but the group I was with knew some form of sign language and we lipread too so we got by. We all help each other with signs as needed. 

Day 2

We started the workshops. At the SWC con, give the first workshop to sponsors. Each sponsor had about 10 minutes to speak. Vendors help fund the conventions we love. They bring us knowledge and technology. Some are Hard of Hearing themselves. Here’s the sponsors this year:

  • T-Mobile Accessibility & Wireless who sponsored the welcome party. InnoCaption who sponsored the hearing loop.
  • InnoCaption has sponsored many SWC cons, they are a regular.
  • We have also had Mitchell Levy of Hamilton CapTel sponsoring and attending SWC cons for many years.
  • Advanced Bionics came and talked to use about their cochlear implants and the Roger Technology.
  • CaptionCall is another sponsor.
  • Yours truly was sponsor as well, Hearing Loss LIVE! and we talked about our Lipreading Concepts classes coming up. Vanderbilt University Brain Development Lab – They are studying how D/HoH children learn. Here is their project.
  • We also had Listen Technologies as a silver sponsor and Cochlear though neither could  show. Thank you vendors for helping make this convention possible!

Hearing Loss and Mental Health

The next workshop was Robin Nobling with NAMI of Davidson County. Her talk was  titled: Got Stuff? “Not a single person gets through life without a period of anxiety, depression, fear, grief, anger.” Those of us with hearing go through all those emotions well. She encouraged us to unpack our ‘stuff’ and move toward acceptance. What I got from it was that we should talk about it and connect with peers. 

Our last workshop of the day was with Cynthia Moynihan, a hearing loss advocate for 30 years who gave us Hearing Loss Empower Hour.  She shared some of her challenges from over the years with us. “Why me,” she used to ask. “Because I have the opportunity to learn and give back.” She finds a word to focus on each year, this year’s word is “opportunity”.  She’s found plenty of opportunity. She warned us against fitting into a mold, accept and embrace our uniqueness. 

The SayWhatClub also has daily, accommodated activities. That night we all met at the Wildhorse Saloon to learn line dancing with captions and sign language! Captions thanks to Julia and the ASL interpreter was provided by Bridges for the Deaf and Hard of Hearing.

Are you tired yet? I was but it’s worth it.  I love hanging out with my tribe. 

Day 3 Friday, August 12th

Friday’s first workshop was with Nancy Denning-Martin & Mike Helms of Bridges for the Deaf and Hard of Hearing. It was titled Advocating for Big Change. For those of us passionate about advocacy, this was informative! Nancy and Mike talked about creating change on the “micro level” which is family, friends and people you meet day to day. There is also the “meso” level of advocating which is things like churches, schools and other groups. Last, there is the “macro” level which affects change on a larger scale; politics, legislation, policy. Samples were given of each category.

The second workshop was:Jourdan Holder AuD, the director of the Cochlear Implant Program at Vanderbilt University. She gave us: Hearing Devices, An Update on Technology, Candidacy and Outcomes. She gave us a lot of information about cochlear implants. They are working on shortening the electrodes to have a better chance at leaving the remaining hearing. This is going through the FDA process of approval. 

Our last workshop was with Peter Hodes, Introduction to Tai Chi: Movement for Health, Balance and Relaxation. He led us through a series of tai chi movements, showing us how to breathe through them. He encouraged people to do what they could and no more. Pain isn’t the answer here. Use a chair or a table as needed. He made us laugh a lot. For many of us, wit was the first time trying tai chi. 

The afternoon activities were a tour of the Grand Ol’ Opry backstage, Madame Tussauds Wax Museum and then attending the night’s show at the Grand Ol’ Opry. 

Day 4, Saturday August 13th

Our last day is dedicated to afternoon activities in the downtown area of Nashville. They went to the Country Music Hall of Fame to attend the Songwriters Sessions Bonus and tour the Museum there. 

It’s banquet night! The banquet was sponsored this year by Safe N Clear. Safe N Clear gave away a box of masks with a window, one box to each table. They also provided each guest with a mask to use. 

Keynote Speaker

Our keynote speaker was Meaghan Thomas, a broadcast meteorologist in Nashville who created  The Heart of Hearing Foundation.

Her dad had a hearing loss while she was growing up so hearing loss was no big thing.  Her own hearing loss was undetected for many years because they thought, “she just wants to be like dad.” In a high school physics class, they were working with different frequencies and that’s when her hearing loss came to light. Still she considered it normal and blew it off. It wasn’t until college that hearing loss became hard to blow off. She didn’t know about accommodations so she “scooted by”. In grad school she was more upfront about her hearing loss and they let her record classes. 

As a meteorologist/tv host, she had to get an ear piece. She was fitted for that at a hearing aid place. That was her first real hearing test. Up to that point, her coworkers thought she was unfriendly because she didn’t always answer them. One confronted her about it and that’s when Meaghan let her know she was deaf on one side and had a hearing loss on the other side. That helped clear the air and that coworker became one of her champions. 

Hearing Aids

Along the way she was able to get her parents to buy a hearing aid. That was all they could afford. She was amazed at how much she could hear and what things made noise. However, it was too unbalanced having only one so it got put away. 

Three years later she was told about the state vocational rehabilitation program by a new audiologist. The VR program was willing to pay half of the hearing aids and she wanted them so much she was willing to go in debt to pay the other half. When she went in, they gifted the other half to her because they knew she would go on to do good things. She said she sat there and cried.

Last year she came out about her hearing loss publicly posting a picture of her holding her hearing aids out. The next day she woke up to a thousand comments, receiving encouragement. Many parents of kids wrote in to say it helped their kids know they do whatever they wanted. She appeared on Good Morning America with this story. Shortly thereafter she wrote a children’s book based on the comments. Once she made her money back from the book, 100% of the funds goes to the foundation she created.

The Heart of Hearing 

The Heart of Hearing Foundation was created to help others in need of hearing aids. Right now it helps people within in the Nashville area but she’d like to go nationwide and help many others.  Her main goal is to help the working age people, 20-45, to get hearing aids. These people need hearing aids to keep working. 

“When you finally become okay with who you are, you don’t realize how many people you are going to bless.” A lot of heads here nodding at the convention. Hiding hearing loss is a lot of work. When we become more about about it, and what we need to communicate, the easier it gets. We touch many lives and we can make a positive impact. 

Grow your connections. Attend a hearing loss convention.  

Julia and are looking forward to attending the Association of Late-Deafened Adults (ALDA) October 19th-23rd in San Diego, CA. This too is a fun convention with lots of great people and information. ALDA is famous within the Hard of Hearing community for their Karaoke Night. Let’s sing our hearts out because we can’t hear anyway! Just have fun. 

Join our September 6th Talk About It Tuesday at 6:00 PM MST to learn more about either convention.  

Crowdfunding

We are bootstrapping it and started Hearing Loss LIVE! with our own funds. We keep as much of our services as we can free. There’s two ways you can help us. You can share our podcasts, blogs and events. Or you can Buy Us A Cup of Coffee

Categories
Advocacy Connections deaf Education Hard of Hearing Hearing Loss

Guest Katherine Bouton, Author and Advocate

Meet our latest guest, Katherine Bouton. Katherine is an author, a frequent public speaker, and an advocate/educator for the deaf and hard of hearing. We bet most of you remember the book that many in the Hard of Hearing (HoH) community celebrated, Shouting Won’t Help: Why I—and 50 Million Other Americans—Can’t Hear You. It came out in 2013 and we were thrilled that it brought more awareness to hearing loss.

Her most recent book, Smart Hearing: Strategies, Skills, and Resources for Living Better with Hearing Loss (2018) is an update of Living Better with Hearing Loss (2015) and contains more current information on over the counter hearing aids, and other devices coming onto the market. (Find out more about Katherine’s books on her author page on Amazon.) She also has a long running blog called Smart Hearing.

Katherine is a cochlear implant user and wears a hearing aid. She’s been at the bottom of hearing loss and found her way through it all to become an advocate for others too. 

During the Hearing Loss LIVE! podcast, the four of us talked about many things hearing loss: 

  • The stigma
  • Being deaf in noise
  • Over the counter (OTC) hearing aids coming out late this summer
  • Assistive listening is great and so are captions.  “Captions are the wheelchair ramp for the deaf.” (She credits Arlene Romoff with that quote, read more about this on her blog.) 

Here in the Hearing Loss LIVE! blog, we get to expand on topics we didn’t have time for on the podcast.

Julia Loves Connections

Shall I be a broken record? 

Connections get us in the KNOW! There are many technical books about hearing loss. Lots of scientific studies. But not a lot on self discovery and hearing loss. When we write about our experiences—positive or negative—we find someone who thought they were the only ones.

Katherine talked to us about her days at the New York Times and hearing loss. We don’t often talk about hearing loss, the workplace, or the ADA. Truth is, we should be talking about it. 

Why?

People learn from those that came before. With their prior experience, they can share what they did right or wrong. They know why it is SO important to speak your hearing loss truth and request equal accessibility in your work setting. It’s hard to be the first to speak up. However, when we do, we expand accommodations for all that come after us. In a perfect world, business settings would stop hiding behind their interpretation of the ADA and trust their employees with the request made. This is an investment in the employee, a loyal employee. This should be the way no matter the size of the company.

I encourage you all to join hearing loss support groups. One of the best things to come out of COVID-19 is that many HLAA Chapters meet online. (Here is the NYC Chapter meeting page.)  If you have a local chapter, share invites to other HLAA state chapters to join your local meeting. Knowledge and experience happens when we get together and create a community of support.  

“One of us! One of us!” Chelle’s Chant

That’s the chant that goes through my head when I get into a good conversation with other advocates. We all start out at the bottom of hearing loss. We go through all the muck and mess of it. When we are able to pull ourselves together, we usually go on to help others too. Katherine does that so we enjoyed talking with her. 

Katherine brought up that she thinks stress can make hearing loss worse. Yes! In 2007 I was under an incredible amount of stress and that’s when my hearing took a big dip. I didn’t notice the drop because of everything going on, a coworker did. She took me outside one day and told me she noticed I was missing a lot more than usual. She suggested going to get my hearing checked.

Stress & Hearing Loss

Curious, I went in for another hearing test. My hearing aids were two years old and it hadn’t been long since we did my annual test. The audiologist resisted doing the test. “No one’s hearing changes that fast.” I pushed him for it because I wanted verification one way or another. After the test, he looked at me defeated. “Your hearing dropped a lot. There are no other hearing aids right now that will fit that kind of hearing loss. You’ll have to make do with what you have.”  That was a real crusher. I remember using the music program a lot for a better chance at undering speech. I kept those hearing aids for 6 years all together, making do. 

Thinking back from there, I realized my last big drop in hearing happened while I was going through a divorce. That’s when I went from in the ear canal hearing aids to behind the ear models. So I do believe stress affects the body in all kinds of ways, including hearing drops. 

Michele‘s Passion for Spreading Awareness and Advocacy

Like many, finding a tribe of Hard of Hearing (HoH) peers brought the most profound change to my journey with hearing loss. It opened my eyes to the magnitude of the HoH community and taught me I was not alone. Exchanging stories and experiences with others who understand exactly what life with hearing loss is like, because they face the same challenges of a communication barrier, proved empowering. I regained my confidence and it was the start of my becoming a better self advocate and wanting to share the same with others by volunteering.

A big part of my volunteer effort was with the SayWhatClub and in 2011 I began helping with the management of their public Facebook page. That led to searching for hearing loss-related content to share there. After Katherine’s memoir Shouting Won’t Help debuted, I began reading her “What I Hear” blog on Psychology Today, where she explored the experience of losing her hearing as an adult, and I shared those articles on social media. I still share her blog and news articles.

In looking back in my email archives, I realize I began sharing Katherine’s writing, or articles written by others about her, even before I started sharing her blog articles:

I am very thankful that Katherine chose to become an advocate and to use her platform as a journalist to speak publicly about her hearing loss experience. She has brought much needed attention to the HoH community. 

We need more advocates sharing facts that clear up misconceptions that the world has about hearing loss. It is going to take more of us speaking up for our community and our needs to become more widely recognized and accommodated. It was a pleasure spending time with Katherine and collaborating on our podcast.

Meet Katherine in person online yourself…

Katherine is the president of the Hearing Loss Association of America, New York City Chapter. Their next meeting will be September 20th 6:00 – 7:30 PM EST. The meetings are online and open to anyone. In September they have Hearing Professionals with Hearing Loss. “A panel discussion featuring ENT’s and audiologists who will talk about how their hearing affects their work as clinicians. The panelists range in age (some newly minted, some newly retired) and hearing histories.” The registration link will be added late August. Hearing Loss LIVE! will share the link too.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.

Categories
Connections deaf Hard of Hearing Hearing Loss Live Theatre Speechreading/Lipreading

Michael Conley Playwright, Reading Lips

Our guest this week is playwright Michael Conley who talks about his play “Reading Lips“. Michael was born in a small town in Kansas. After high school in Chicago and college at the University Delaware, he moved to New York. He received his MFA in screenwriting from Columbia University. Michael currently resides in San Diego and is the Co-Vice President of the San Diego Chapter of Hearing Loss Association of America.

Michael’s plays have been presented in New York, San Diego and Philadelphia.

Michael: Writing “Reading Lips” brought out a part of my identity that I didn’t even know was there. Meeting people with a hearing loss and learning that they experienced the same challenges I have always faced made me realize that I’m part of a larger community. That although I had been struggling my whole life with developing tips on how to “get by” (as I call it), everyone else was trying to get by as well.

Working on the play introduced me to a lot of people I would otherwise not have met. Meeting those who used ASL to communicate made me want to learn ASL. That in turn led to studying Deaf Culture—this history that we all share (even if peripherally).

At the time, I thought “Deaf people” were only people who had no hearing at all. I remember asking someone who was completely deaf if they consider me as Deaf. “Sure!” Not only did that give me more insight into the range of hearing losses people have, but it also gave me an appreciation of how inclusive and embracing the Deaf Community is.

Chelle:
I love making connections with others who have hearing loss. Everyone has something to teach me. I attend Audible Talkers Toastmasters meetings which are held online. I’ve been a member for a year and a half. Their meetings are accessible to the Hard of Hearing (HoH) with live captioning and automatic speech recognition. HoH members get a transcript, or outline, of each speech before the meeting, allowing us to enjoy the live speech and provide more effective feedback. The club is supportive and their members, HoH, hearing, English as a second language, and more, are each fascinating in their own way.

Michael was a guest at recent meeting (anyone can attend as a guest). Alongside his name I noticed readinglips.com. Of course I had to investigate that! It turns out Michael is a playwright and that makes it all the more interesting so we invited him to podcast with us. It was great having him with us.

On his website, Michael shares information about his play, “Reading Lips”, a full-length play about being gay and Deaf. While writing the play, he posed the questions, “Am I gay man who happens to be Deaf? Or a Deaf man who just happens to be gay?” In the upcoming podcast with Hearing Loss LIVE!, Michael shares, “Having a hearing loss has made far more of an impact on the choices I made in life,” and that made me think.

Hearing loss changed the course of my life after the last big drop. How many times have I thought ahead and said, No I can’t go. It won’t be accessible to me. I quit the one job I thought I’d be doing all my life because of hearing loss. I went into a deep dark hole which took a few years to climb out of. Hearing loss impacts our lives in many ways.

Hearing loss affects relationships in our family too. During our podcast together, Michael tells a story about how growing up with a hearing loss affected his family life. I’m not going to spoil the story here, you’ll have to watch.

Gallaudet University Campus, Washington, D.C.

Photo Credit: Reading Lips website
June/July 2019: Michael Conley studying American Sign Language (ASL) at Gallaudet University, Washington, D.C., the world’s only university for the Deaf and people with a hearing loss.

Photo Credit: Reading Lips website

Michele: Before our podcast with Michael, I read everything on his website and searched for more information on the internet. I was especially interested in his experience at Gallaudet University, as I’ve thought about doing something similar—spending a semester or two studying American Sign Language (ASL) and immersing myself in a community rich in Deaf culture. I especially love Washington DC, so there’s that too.

Because there was a no-voicing policy in his program at Gallaudet, Michael talked about how liberating it was not to have to wear his cochlear implant (CI) or hearing aid, and not having to position himself to read people’s lips. I can relate. I’ve never worn hearing aids (other than in trials) or CI. If there is any consolation in not finding help with technology, it is a certain freedom from trying to hear better—something members of Deaf culture understand and embrace—which in turn has allowed me to focus more on communicating better.

I sometimes think people with hearing loss are so focused on their quest for technology to help them hear better, they miss the really important step of learning to be comfortable with who they are without any type of aid or communication tool.

We are likely never going to hear as well as we would like to in some situations—battery failure, too much noise or distance, and/or weak WiFi and cell phone service depletes the effectiveness of our hearing devices, assistive listening technology, and ASR (automatic speech recognition) apps. Even lipreading, textual English, and ASL are a challenge without a readable speaker, captioner, or interpreter.

However, if we can learn to communicate confidently even without any of the valuable communication tools and technology we rely on, we are going to have a life with fewer limits. That is no small thing.

Julia: We are always looking for like minded folks to podcast and blog with. Chelle asked us to review Michael’s website and see if we liked the fit. I read the first three lines of “Reading Lips” and responded, oh yes!

I love the theater. Grew up on it. By age eight I could tell folks what costumes were different in that season of Ballet West’s “The Nutcracker”. I love musicals and often sing show tunes around my house—some lyrics I make up depending on my mood. I’ll take thought provoking, personal growth and experience, small theater any day. I would love to see a production of this play. It’s different and refreshing. It’s about finding your identity. As much as I love the originals, small playhouses where the director and playwright work together I find so enjoyable.

The first time I met Michael was in a Hearing Loss LIVE! Self Advocacy workshop presented by Michele Linder. Michael asked a question, why would folks not just ask for what you need? Why indeed! We need more HoH people to adopt this mindset. Be proactive, be diverse. Be the best HoH you can be!

Watch our companion podcast with Michael.

If you liked this podcast, try artist Liza Sylvestre who explores her hearing loss through art. Also take a look at our blog with Salt Lake Acting Company who offers open captioned plays.

Categories
Accessibility Advocacy Connections Hard of Hearing Hearing Loss Sensory Loss

Meaningful Connections with People

Connections spread awareness. We touch each other’s lives, then go on to share what we’ve learned. The Hard of Hearing tribe is a giant web of people connected together. 

Chelle: There are so many great connections to make within the Hard of Hearing community. I’m so glad I had the urge to search out others like me, my tribe, because it gave me my place in life.  In the mid/late 90’s I found the SayWhatClub (SWC). I had an email full of people who got it and introduced me to accommodations, life skills and technology. I went on to meet them at Camp Colorado in 1998. About 30 of us met at Rocky Mountain National Park and hung out together for about 4 days. No one felt left out, we connected over hikes, campfires and tours. I’m still connected to several people from there.

Chelle (5th from the left): 1998 SayWhatClub gathering at Rocky Mountain National Park.

Hearing loss conventions are great for making connections. It’s all about the people for me, though I enjoy the workshops too. My first convention was the SWC con in Salt Lake in 2012. Their cons are small and intimate so I got to know just about everyone. I made several, lifelong, friends here. Then I went on to the Hearing Loss Association of America (HLAA) convention. They are bigger with more choices in workshops, I love their exhibit hall. I met several wonderful people there. We may not talk often but when we need something, we’re there for each other. Another great group of people, the Association of Late Deafened Adults (ALDA). Karaoke with HoH/deaf friends will rock your world at ALDA cons. If I could, I’d attend all 3 every year. Guess what? They are all 3 coming up!

  • HLAA con June 23 – 25, 2022 in Tampa, FL
  • SWC con August 10 – 13, 2022 in Nashville, TN
  • ALDA con October 19 – 23, 2022 in San Diego, CA
Chelle (far right) and a few of her Utah people.

Supporting the hearing loss community in as many forms as possible is another passion. I’ve attended many other HLAA chapter meetings, not just my own in Salt Lake City. It’s wonderful that most are online these days so we can join from anywhere. I joined the Audible Talkers Toastmasters club out of Arizona, also online and accessible to those with hearing loss. I’ve been there for two years and it has proved to be a valuable experience. I met more super people here.

Challenge yourself to know others with hearing loss, be it a local support group, online meetings, workshops, classes… whatever! They are some of the best people you’ll meet and there’s nothing like finding your tribe.

2015 SayWhatClub Convention in San Antonio, Texas. L to R: Robyn Carter, Me, and Vicki Turner, of Turner Reporting & Captioning Services.

Robyn lives in New Zealand and visited me when I lived in Germany. Vicki, who provided open captions for a live theatre event at the con, had connected with Robyn while she was in New Zealand. Small world!

Michele: Choosing connection over isolation is the way to go!

My grandma, who was deaf and taught me how to finger spell.

Family: My first meaningful person-to-person connection linked to hearing loss was with my grandmother. She lost her hearing in much the same way I did, and from the same young age. She was a lipreader who taught me how to finger spell (the extent of sign language she knew) as a child. When all else failed I would write to her. I am lucky that even before my own hearing loss diagnosis (grade school), I had a positive example of someone very capable in life in spite of their hearing loss. Eighteen years was not nearly enough time with her, and I miss her every day.

2014 SayWhatClub (SWC) Convention in Madison, Wisconsin: Leslie Cotter (Left) is a fellow Minnesotan who I met in 2008 when I joined SWC. We were fellow volunteers and met for the first time in person in 2009 when she invited me down to the cities to meet Cathy Hilden who was in town.

Chelle Wyatt (Middle) rejoined SWC in 2009 and we became online friend and fellow volunteers. We didn’t meet in person until 2014. We’ve visit each other regularly over the years since.

Steve Nye (Right) joined SWC in 2013 and we met in person at 2014 convention and a few cons since.

Peers: When I began connecting with people in the Hard of Hearing community online—unfortunately, not until my 40s—I was amazed. Having a common focus shrank the world down to a small international group of people that I crossed paths with in many different places.

I met Julia Stepp in person for the first time at a Salt Lake City HLAA Chapter meeting where she provided CART. Julia has been the CART provider for several of our SayWhatClub Conventions and will be in Nashville this year!

That led to finding a peer support group (SayWhatClub-SWC was my first) where connections happen naturally. Many connections turn into lifelong friendships, and that is how I met Chelle. Information, experiences, and invitations shared by peers led to other connections. I met Julia while visiting Chelle, and I also connected with some other great Utah people. When their Division of Services of the Deaf and Hard of Hearing (DSDHH) opened up their online classes during the Covid lockdown, I made new connections during Speech Reading and Living with Hearing Loss classes.

Volunteering: After joining the SWC in 2008, I was asked to volunteer almost immediately. While writing for the newsletter and blog, and searching for content for the SWC public Facebook page, I connected with people and information that I probably would not have found otherwise.

Boise, Idaho: 2016 SayWhatClub Convention.
In 2018, Liza Sylvestre (second from the right), an artist with hearing loss, invited me and more than 50 others to take part in a Sensory Loss Symposium at the Weisman Art Museum in Minneapolis. I learn so much when I say “YES!” to participating and connecting. It was an amazing experience!

Also, researching to find solutions for newcomers on the SWC email lists led to some of my most meaningful connections, both brief and years-long. Volunteering resulted in helping myself even more than those I was trying to support. And, it kept me motivated to continue to learn and connect even when progressive hearing loss got me down.  

Movers and Shakers: There is so much creative energy in the Hard of Hearing community to connect with. I am continually initiating contact to find out more about artists, writers, advocates, communicators, service providers, and emerging technology developers who are doing great hearing loss-related work. Most of the responses I receive are from the actual creative person and it makes for some interesting email and messaging exchanges and even can lead to friendship.

Julia: “Hearing loss affects every family member, especially when it comes to communication. Communication is the key to staying connected. There are many tools that can help you stay connected. Most families don’t find these tools until the connection is a struggle and everyone is beyond frustrated. My hope is that this finds folks before the connection is damaged.”

Julia: Boy, meaningful connections. What would my life be without them? I would not have known how to navigate hearing loss myths with my own family. My family would not have the communication tools that they use every day. My kids would not have the understanding of different needs for those with hearing loss that they do. I would not be able to pass on to others the importance of family/friend support and that they too need to be in the know. 

I wouldn’t have met two thought provoking, self-advocating ladies to start a business with.

Don’t stop living your life. Learn about new tools. Make more friends and share advice. Hearing loss and Hard of Hearing needs are different for each individual. But shared experiences help us stay connected. Everyone needs a shoulder at times. Even those with years of hearing loss experience can learn new uses for that tool box just by being connected to others who have an experience to share. Get out. Share. Grow.

Join Hearing Loss LIVE! Tuesday, June 7th and let’s get connected with Talk About It Tuesday! An open discussion about hearing loss, online via Zoom with captions.

Watch our companion podcast here.

If you liked this post, try Finding Your Tribe because that’s where you find some of your most valuable connections. Connect better with your family, read Hearing Loss: Family and Communication.