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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
Communicating with Hospital & Medical Staff deaf Education Hard of Hearing Hearing Loss Mental Health & Hearing Loss

Mental Health Myths in Treating Hard of Hearing Clients: With Gloria Pelletier

Our guest this week is Gloria Pelletier, a Licensed Clinical Social Worker, who has become a great connection for us here at Hearing Loss LIVE! She brings a wealth of understanding about how hearing loss and mental health have a long way to grow together. Watch for our ongoing series with Gloria where we will unpack more misconceptions as it correlates to hearing loss and mental health diagnoses.

Change the Therapeutic Milieux
Gloria Pelletier

Gloria: With my last, large hearing drop I no longer could communicate effectively. I could speak but I couldn’t hear what others were telling me. I could still read lips, sort of, but not enough to be able to understand communication.

I decided to go to a mental health professional to learn how to deal with my drastic hearing loss. Unfortunately, what I found was that the experience of losing a sense and the resulting consequences was not well understood in the mental health community. I was given many different diagnoses in an attempt to define my experiences. None of which were accurate. I began to ask my community circle if they had experienced the same phenomena. I did a small survey of those who were doing therapy and no one made any accommodations for hearing loss or understood that there were some adaptations that could look like or were similar to other DSM ( Diagnostic and Statistical Manual of Mental Disorders) criteria.

After a quick literature search it became apparent that this was a common occurrence for Deaf individuals. I was talking to Chelle about the misperceptions in the mental health field and this is how the podcast was born. It is imperative that Hard of Hearing (HoH), deaf, late deafened, Deaf, etc., are understood within the mental health community so that we can get the appropriate treatment.

Hearing loss and the consequences of losing a sense is well understood medically. What is lacking is understanding of how that impacts the HoH emotionally. What does that look like in everyday living?

With the help of Vocational Rehabilitation we explored the technology available now which would assist me in continuing to do therapy. With technology I can communicate with the hearing, and HoH community effectively. I can still do what I love.

My goal is to increase the knowledge within the therapeutic community’s understanding of hearing loss, the consequences and how best serve those with hearing loss. To deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

I lost my hearing, I didn’t lose my abilities. I have the same abilities I had before, except hearing. There are ways to live with hearing loss that will augment my skills and understanding. Let’s work together to find those, make them known and assist others in knowing hearing loss can be an adjustment not a disease.

Julia: In our Podcast with Gloria you will hear the acronym “DSM.” This stands for Diagnostic and Statistical Manual of Mental Disorders. The American Psychiatric Association is a great place to learn more about DSM and its role in patient diagnosis. 

I don’t know about y’all, but as a kid “mental health” was a dirty word. Almost as dirty as the word “hearing loss.” Mental illness meant you couldn’t perform a job the way a normal person could. Hearing loss meant you couldn’t perform a job the way a hearing person could. Mental illness meant someone unstable who might say something inappropriate. Hearing loss meant someone unstable who might say something inappropriate. 

People around the country are working hard to change the stigma of mental health disabilities and therapy. Thank goodness. But the work is still in its infancy in my opinion. Hearing Loss LIVE! is working to change the stigma of hearing loss disabilities. Thank goodness. But here too the work is still in its infancy.

All patient intake forms should have a section related to hearing loss. 

  • Have you been diagnosed with hearing loss?
  • Has your hearing changed recently?

And so on.

Chelle: With hindsight and new awareness, I’m sure I had hidden hearing loss as a teenager. 

  • Though I could hear in the classroom, I couldn’t hear in the noisy hallways between classes. 
  • I hated being in the backseat of cars because I couldn’t understand what people were saying. I had to lean forward and hang my head in the front seat to hear. 
  • People couldn’t talk to me from another room without a repeat. 

Tinnitus at 18 was suggestive that I might have hearing loss but the audiologist said my hearing was within the normal range. Five years later, I was wearing hearing aids with a more obvious hearing loss.  

Chelle, mislabeled as a typical defiant teenager

Instead of suspecting hearing loss, I was a “typical teenager saying huh” all the time. Or a defiant teenager for not paying attention and mirroring anger with people who were impatient repeating. Years later, I found out while attending a high school reunion people thought I was stuck up, or antisocial.  

These days there are hearing tests for “speech in noise”. When I was a teenager, that wasn’t an option so we just didn’t know. Hearing loss is more prevalent these days. One in five teenagers experience some sort of hearing loss. In a class of 30 kids, that is 6 who may experience hearing loss. If a teacher has five classes a day, that’s 30 kids a day with a possible hearing loss.  

Gloria and I discussed this a couple of months ago. I remember the silence as we both processed this new awareness. There aren’t regular hearing screenings in schools so how long does hearing loss go undiagnosed? How many teenagers are labeled as antisocial? Defiant? Maybe even ADD for not paying attention. Are we checking their hearing?

Michele: I recently stumbled onto the empowEAR Audiology Podcast hosted by Carrie Spangler, Au.D, CCC-A, who has hearing loss herself—she was implanted with a cochlear implant in November of 2019. NOTE: Transcripts are available, however, the ASR (automatic speech recognition) captioning isn’t corrected. You know I’m going to contact them about that.

In episode #40, Dr. Spangler’s guest is Matt Hay, a 45 year old man who began losing his hearing his sophomore year of college. He was diagnosed with neurofibromatosis, type 2 (NF2), and underwent an auditory brainstem implant (ABI – 12 electrodes connected directly to the brainstem in the area that processes sound) just after it was FDA approved in 2000. Matt woke up from the surgery with facial paralysis, he couldn’t walk, and had double vision, not to mention all the work it was going to take to learn to hear again with the ABI.

In reading the entire podcast, what struck me most was that Matt had all kinds of physical rehab and therapy, but not much on the hearing loss side that addressed the emotional and mental struggle we all go through. He talks about the things it took too long to learn—self advocacy, realizing you can question professionals, because they don’t always know best or have answers, and the fact that nobody ever came to him and said, “Hey, we have this training that can help you.”   

Matt found himself explaining his frustration to everyone, even his doctors: ”And I remember being so frustrated and saying like, you just don’t get it. You don’t understand why this is hard, why it’s exhausting, why it’s lonely, why [I] can be surrounded by this support and still feel totally on my own and alone.”

Unfortunately, doctors, therapists, and the other medical professionals who treat us, have not been trained to understand hearing loss.

During a follow-up hospital appointment with CART/Textual English Interpreting—I requested CART for the first time for a procedure I had done last week—the Nurse Practitioner was amazed at how well CART worked. She was very curious and asked a lot of questions about it. One thing I made sure to tell her is that without an effective way to communicate, people with hearing loss can exhibit behavior that is misinterpreted as mental health or cognitive issues.

Why the Hard of Hearing might be misdiagnosed or mislabeled:
  • Staring at a speaker’s lips while lip/speech reading can come across as intimidating.
  • The intense concentration it takes to understand speech is often misinterpreted as anger.
  • Needing more time to process information, mispronouncing words, or the confusion resulting from ‘bluffing’ can be misinterpreted as a cognitive disorder or learning disability.
  • Poor voice modulation leads to a client or patient being flagged as depressed or having a health disorder.

Can you think of others?

We are so happy to support Gloria as she works to increase the therapeutic community’s understanding of hearing loss, and to deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

Watch our companion podcast with Gloria here.

If you liked this topic, try the Emotional Side of Hearing Loss, there are a lot of emotions that take time to process. Meaningful Connections with People is another good one. Gloria is a wonderful addition to our meaningful connections.

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
Education

You Don’t Know What You Don’t Know

Ignorance is certainly not bliss where hearing loss is concerned. Once diagnosed, the Hard of Hearing are desperate for a map to help them navigate the pitfalls and gaps that lie between what they don’t know that they don’t know and information that allows them to function in life. As patients and family members, they look to those who they assume can guide them and fill in the gaps—hearing healthcare professionals.