Categories
Communication with Family Connections Emotions, Psychological Stress Hard of Hearing Hearing Loss Sensory Loss Vulnerability

Grief: Hearing Loss & Healing

Join our LIVE! Workshop on Grief: Hearing Loss & Healing with Gloria Pelletier on February 7th, 6:00 – 7:30 PM Mountain time online via Zoom. (Adjust for your time zone.) 

Registration is required, here is the link. This is a Let’s Talk Tuesday Workshop.

This post is written by Gloria Pelletier (M.S.W., L.C.S.W., L.I.S.A.C.) unless otherwise noted. This is the foundation for the workshop, which explores other aspects of grief.  

The ability to hear connects us to our world in many ways.  From treasured contact with friends and family to maximum performance in the workplace to physical safety.  Hearing provides deep and important connections that no other sense can replace.”  (Hearing.org)

Blindness cuts us off from things, but deafness cuts us off from people,is a moving quote often attributed to the famed 20th-century activist and educator Helen Keller, who achieved a remarkable career championing the deaf and blind. Those with serious hearing loss often cite this quote. (AARP)

Hearing loss as a stressor in many people’s lives?

Let’s explore where hearing loss occurs in the ratings of stress in society. Below is an older chart of stress which is still the foundation of many other charts for loss.  As you can see, hearing loss rates with number 6 as a “Personal Injury or Illness” with 53 points. We could also add in number 11, with change in health of family members, which is another 44 points.  (You can add other stressors together.)   

For more info: https://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

That is a huge amount of stress that is unchangeable. One cannot go back to hearing normal again and most likely will lose more hearing as we age.

That level of loss often creates grief. Elizabeth Kubler Ross’s stages of grief are well known (denial, anger, bargaining, depression, and acceptance). Now a person has gone from multiple stressors in their lives to grief.  How did they get there?

Grief isn’t always about death.

It can be the loss of communication as we know it. The inability to communicate, the very foundation of relationships, changes our lives profoundly without warning. Meaning without our permission, sometimes without an illness, without our knowledge – our ability to communicate is permanently altered. There is a sense of loss, uncertainty, isolation, not feeling safe and other overwhelming emotions.  

One of the key functions of hearing is a response to speech, the primary way we connect and communicate, emotionally and intellectually with each other.

A discontinuation of communication: 
  • Can’t understand speech with background noise
  • Need more volume to understand
  • Requests for repeat
  • Requests to speak slowly
  • Withdrawal from conversations
  • Avoidance of social situations, isolation
  • Uncertainty of our understanding of speech
  • Disruption of speech continuity
  • Muffling of speech and other sounds
  • Relationship changes

Hearing Loss is more profound and far reaching than our society has recognized.  Communication is our means to our relationships and family.  Once interrupted, how do we heal?  

Healing:

“…. acceptance takes many forms for different people, but it usually indicates some integration of the loss into one’s life. In this circumstance, acceptance may mean having all the negative feelings about one’s hearing loss while not letting those feelings interfere with relationships and daily life. When going through the stages of mourning, functioning may be affected over the short term, but the person usually will move toward some degree of acceptance. If they do not, they may need emotional support from either a therapist or a support group.”  Kaland, Mary and Salvatore, Kate  The Psychology of Hearing Loss | The ASHA Leader

Some tips that Hearing Loss LIVE! (HLL) has already expressed for healing:

Find your tribe.  Meaning find people with hearing loss that understand your situation and can relate to your experiences.

Information:  

Discover information that helps you understand your hearing loss.

  1. Take “Living Well with Hearing Loss”, an upcoming class with Dr. Ingrid McBride AuD and Gloria Pelletier, LCSW.  
  2. Lip Reading Concepts & Lip Shapes LIVE! classes with Hearing Loss LIVE! (more info)
  3. Upcoming Seminars/Workshops geared to the mental health field for hearing loss. (Chelle Wyatt,  HLL and Gloria Pelletier, LCSW)      
  4. Hearing Loss Live Series of collaboration of topics by Gloria Pelletier, LCSW
  5. Support groups: Hearing Loss Association of America, SayWhatClub and Association of Late Deafened Adults.
  6. Know how hearing loss affects your communication, relationships and ways to mediate them. 
Role Models: 

 Find an organization or person who role models for you how to live with hearing loss and have integrated their hearing loss with their lives.

Americans with Disabilities Act (ADA):  

Know your rights under IDEA, Section 504 and Section 505. Become informed about your disability and how to request accommodations.  Request loops in church, city hall, theaters.  Make sure you have your audiologist turn on your telecoil in hearing aids and cochlear implants. 

Vocational Rehabilitation Agency  

If you qualify, insist on equipment for communication, classes in rehabilitation for hearing loss, knowledgeable Rehabilitation Counselors.

Psychological Assistance

Insist your therapist or counselor has minimal requirements of knowledge for hearing loss and its effects on your communication and relationships.  There is no shame in asking for help in rehabilitation of your communication with family and society.  It is your right!!!

Art

Express your feelings and emotions through any form of art. Self expression through painting, crochet/knitting, mosaics and so much more. Creation eases some of the pain of grief a.

Hearing Loss LIVE! comments…

Chelle: Since my hearing loss didn’t come from an injury or illness (that I know of), I forget it falls into the personal injury and illness category.  Living most of my life with hearing loss, I know how it affects family dynamics. After my hearing test last month, I am experiencing some grief. (I’ll have another blog for that soon.)

Julia: Hearing loss grief affects the entire family. Open the communication channel from the get go. Tell each other what your grief looks like. Healing takes time for both of you, and that’s okay. (This too is an upcoming topic.)

Other posts you may like…

If you liked this post, learn more about Hearing Loss & Collateral Damage to see how it affects family and friends. In April last year, we posted The Emotional Side of Hearing Loss which ties into grief.

Share our blog! Help us spread awareness.

Did you like our post? Check out our Buy Me a Coffee website. Find out how you can further support us and and efforts to spread awareness.

Categories
Connections Hearing Loss Hearing Technology

Dr. Ingrid McBride, Mobile Audiologist

Let’s Talk About Patient Centered Care

Our guest this week is an audiologist, Dr. Ingrid McBride. She lives in Arizona and has a mobile audiology practice, Audio-Logics Consultants, LLC. She travels all over the state of Arizona meeting with clients. Hearing Loss LIVE! met her through our friend Gloria Pelletier who also shares her experience below.

A 6 hour appointment with an audiologist?!

Chelle: Earlier this year, Gloria told me she just finished a 6 hour appointment with her audiologist. Wow. I’ve been wearing hearing aids for 31 years and I never had a 6 hour appointment. What a thorough audiologist, I thought. Not only that but the appointment was at Gloria’s home. 

Several months later, Gloria allowed me to sit in on an appointment with her audiologist, Dr. McBride.  We sat together for almost 2 hours while Dr. McBride helped Gloria regain access to her hearing aid phone app. She also walked Gloria through the different features on the app. Even though I asked questions, Dr. McBride kept her focus on Gloria. She faced her client the whole time, speaking directly to her using clear speech. It was impressive.

We did laugh a lot together.

This was the first time I’ve seen hearing aid technology up close in a while. A lot has changed in the last 8 years since I got my last pair of hearing aids!  I was happy to see how much we can adjust programs to our satisfaction in the app. We have more control than ever before. Eight years ago, the most we could do in hearing aid phone apps was change the tone a bit and change the program. This showed me how outdated my hearing aids are. It’s time to get new ones. 

Clear Speech

After what I witnessed between Gloria and Dr. McBride, I’m also going to make sure I have someone who is knowledgeable about patient centered care. In our podcast, Dr. McBride spells that out for us. Determine whether or not you are getting patient centered care.

Listen to, or watch, our podcast and share it with your significant other.  Dr. McBride shares “clear speech” strategies. It takes two to make communication happen and she gives hearing partners a clear guide to follow. 

Hearing Partners Need to be Involved

Julia: Odds are, the hearing partner is the first person to recognize there is a hearing loss, probably before the hearing loss partner realizes it. There’s several misconceptions around hearing aids. Hearing partners, you can get in the know when involved from the very beginning with audiology appointments. 

A misconception among hearing partners, “Go get a pair of hearing aids and things will be back to normal.” Hearing partners don’t understand what hearing aids can, and can’t, do. When “normal” doesn’t happen, they get upset and angry. I’m not sure why all hearing professionals are not more up front about this. As a hearing partner, if you want better communication outcomes you must be involved. Period.

Attend a Hearing Test

When you attend all audiology appointments, you will find out what type of hearing loss your partner is experiencing. What sounds and tones are affected by their hearing loss. This helps you be a better communicator. When getting new hearing aids, you can review the different kinds of hearing aids together. Look for an audiologist that wants you to be successful with your hearing devices AND communication strategies. Listen to our podcast with Dr. McBride to learn more about this. 

Rehabilitation Services

Think about finding rehabilitative services. As an example; when someone goes blind, there are services to help them learn to get around the obstacles. They aren’t just given devices, they get rehabilitation. The same needs to happen with hearing loss. When you see an audiologist check off these items:

  • Do they encourage you to keep a ‘sound’ diary?
  • Do they encourage you to come back as often as needed?
  • Do they share other hearing loss resources with you? (State services, support groups)
  • Do they offer classes like Dr. McBride?

Be a part of the solution so you both can have better communication outcomes.

Thorough Explanations on Hearing Loss & Hearing Aids

Gloria: I met Dr. McBride at the beginning of this year.  She came to my home and did an audiologic consultation. She did some very different testing for my hearing loss that I haven’t experienced before.  She is patient explaining every test, why she was doing it, and what it told her.  We had a small conference before our testing and she realized I could hear male voices much better than female.  She followed up that observation with testing and it was included in my report. She made adjustments in my hearing aids for that.

After the testing, she explained all the results to me.  We went over the audiogram, what it indicated, how it  worked in programming my hearing aids.  This is important because your programming will determine how successful you are wearing hearing aids. She made a mold of my ear canal and we selected the color of the hearing aid.  I, of course, wanted red but that wasn’t in the selection.

Assistive Listening Technology & Hearing Aids

She came back to my home after she ordered the hearing aids and Roger On Pens for me.  She programmed my hearing aids so well that I could wear them all day from day one.  When she was done programming I heard noises that I hadn’t heard before.  

  • The refrigerator growls. 
  • The dishwasher clangs. 
  • The washing machine is possessed. (Just teasing)  

Never go to Walmart with new hearing aids, I felt I was inside a kettle drum. It was so loud and noisy.  All hard surfaces.

After a month she and I had a conference over a video call to adjust my hearing aids again.  I loved it because she is available and can change the programming through the internet.  Easy and convenient.

Patience

What is so surprising is her patience.  She wanted me to understand my hearing loss, what was happening to me with hearing loss and how to make my life easier with the hearing aids.  I have never had an audiologist who “cared” about my adjustment and was willing to work with me until the hearing aids were useful.   Her understanding and knowledge is more than just hearing aids.  She understands the technology associated and the accessories that make hearing easier i.e. Roger On microphones, extra powerpack.  She took into consideration my video conferencing and the need to clearly understand the speech.  She recommended specific headphones that work with my hearing aids and are comfortable.  

She has since been back to my home for an adjustment because I needed help with the phone app for my hearing aids and she was able to get my app working again.  She is amazing at technology.  She took the time to  hook my hearing aids to my cell phone, my computer and any other Bluetooth connection I required.  Then, she showed me how to do it if she wasn’t there.

Rehabilitation Services = Success

For me, she is a “rock star” because she changed my life.  I wear my hearing aids everyday, all day.  I can use my iPhones and video conferencing and I can hear what is being said.  

I am concluding her class on “Living Well with Hearing Loss” and I learned a great deal I did not know before.  I am always excited for her classes because she organizes the material in such an easy way to understand. She understands the complexity of hearing loss and can speak to the emotional aspects of hearing loss

She makes services happen all over the state of Arizona for people with hearing loss.  She consults with Vocational Rehabilitation which has such a major impact for people with hearing loss and returning to work.  

Sometimes you meet someone who is great at their job and a great human being.  Dr. McBride is that person.  Her passion for audiology and her clients is amazing.  I will never settle for less after working with Dr. McBride, not only did she do many tests but she taught me how to advocate for better hearing.

If you liked this post, try Hearing Loops and Telecoils.

Do you like our content? You can help us out by sharing the blog or buy us a cup of coffee. We started this business from scratch, bootstrapping it. We are just into our second year and we are getting our legs under us. Thank you for visiting with us, feel free to contact us anytime.

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.