Categories
Advocacy Cochlear Implants Communication Access Communication Practices deaf Hard of Hearing Hard of Hearing Defined Hearing Loss Hearing Loss LIVE! Talks Misconceptions Self Advocacy Sensory Loss Shame/Stigma/Denial Tribe

Hearing Loss as an Identity Crisis

When we think of hearing loss we don’t automatically think that we enter into an identity crisis.  For some, “The situation is very different for late-deafened adults. These individuals have developed a personality that does not incorporate hearing loss. They have jobs, families, and personalities and relate to those aspects of their lives as fixed. When hearing loss occurs, it is a very disorienting experience. Rapid losses are more disorienting than gradual losses. Late-deafened adults often report that their hearing loss robs them of an understanding of their identity and often initiates an identity crisis. They may manifest a “reactive” depression and/or anxiety in response to a typically external situation.”  The Psychology of Hearing Loss | The ASHA Leader

Black background. 
White text: Who am I now that I have hearing loss?
Picture: Bright green outline of person with short hair. Little bubble above and behind the person.
Green hearing loss live logo in the lower left corner. 
Green flames at the bottom, reaching higher on the right.
Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

When I had a large drop in my hearing, I no longer had receptive language. I was aware that something critical happened, I just didn’t know what. For many years, I stumbled around conversations without success. After each failure, I would retreat more into silence. Silence was my friend, my comfort.  It was also my enemy.  

The more I retreated, the more I lost parts of me until I no longer was actively involved in any social event. I had become lost to myself to the point that I would no longer communicate outside of my grandchildren. Conversations were so hurtful I did not engage anymore. 

For a social worker that is a tragedy. 

My whole life was communication. I spent years learning to communicate effectively with people and then lost my receptive language. Did this mean I could no longer be a therapist, a social worker, Mother, Grandmother, friend, advocate? My hearing loss held me hostage. Life as I knew it disappeared and it would never go back to the way it was. There were no programs to help me, there were no agencies to help me with rehabilitation, there was nothing. I felt lost inside myself with no way out.

What Happened?

Now I know that people with mild hearing loss lose the ability to hear certain sounds i.e. F, S, TH, birds chirping. (High frequency hearing loss-most common hearing Loss in America.) When I could no longer hear certain sounds they did not exist for me, except the consequences of not hearing them. 

Visual for a High Frequency Hearing Loss
3 separate boxes with text. Each box represents a different level of high frequency hearing loss.
The top box is severe and has several missing letters in each word.
The moderate high frequency hearing loss in the middle box shows  some missing letters in each word. The third box shows what a mild high frequency hearing loss looks like, missing the letters F, S and TH.
Underneath the boxes it says no hearing loss: When the pandemic started, it threw the hard of hearing off. It was upheaval. People with hearing loss had an extremely difficult time because of masks as it took the ability to lipread away.

(To see all sensorineural hearing loss visuals, go HERE.)

I didn’t know there were holes in words with a high frequency hearing loss. (This chart demonstrates how a person with high frequency hearing loss experiences sound.) Simply, I no longer experienced sound the same way that a hearing person does. If unaware of this dynamic, we compensate for the lost sounds unconsciously. The brain is trying to make sense of the sounds that it hears and fills in gaps of what it doesn’t hear.

Receptive language is:

“A foundational component of communication that refers to the ability to understand and process spoken or written language. It encompasses a variety of skills such as interpreting words, sentences, and non-verbal cues, such as body language and facial expressions.” The Power of Understanding: A Guide to Receptive Language in Early Childhood Education (readabilitytutor.com)

I was aware that something was wrong in the conversation because I was  not responding correctly to the cues or topic.The person talking to me was confused (we all pick up on body language), but they didn’t know what was wrong either. Now the hearing person wondered, “What happened?” The person with hearing loss may think: “I know I am not demented. I am competent. What is wrong with me? What am I missing in this conversation?”  

Mis-Communication

When this type of mis-communication happens several times a day, the person with hearing loss, who lost some receptive language, can no longer receive intended messages. Loss of identity is a normal result of these types of experiences. With a lack of understanding, hearing loss creates confusion. I experienced complete verbal failure.

How do I now exist with whatever is happening? Am I me anymore? If you happen to be older, the family may grab the most simplest answer – dementia; which my family did.  My children thought I had dementia because I did not remember conversations or events. 

If the hearing loss person does not seek the appropriate services this might be substantiated, because the real problem is hidden. I did not seek help, I didn’t even realize I needed help. Finally, I found Vocational Rehabilitation services when I couldn’t hear during a court case. When we have these experiences occur over and over, we become depressed trying to find stability in our lives. 

We no longer know who we are – identity crisis.

This ends part 1 of Hearing Loss as an Identity Crisis. Look for part 2 next week, The New Norm. Be sure to join us for our April 2, 2024 Let’s Talk Tuesday workshop at 6:00 PM Mountain time (adjust for your time zone). Have you already registered for a Let’s Talk Tuesday? You will get an email soon with the link. If you’re on our newsletter, you automatically receive the link. Not on either? Find the registration link for both on our home page HERE.

Learn more with Gloria Pelletier and Hearing Loss LIVE!

Use our Contact Us page if you would like to get in touch with Gloria.

Categories
Advocacy Connections deaf Education Hard of Hearing Hearing Loss

Hearing Loss Advocate Katherine Bouton

Meet our latest guest, Katherine Bouton, a hearing loss advocate and author. 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.

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

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 unpack more the mental health myths as it correlates to hearing loss.

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 has hearing loss, 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.

Categories
Accessibility Advocacy Captioning CART (live captioning) deaf Hard of Hearing Hearing Loss Speech to Text Captions Stenographers

Global Alliance, Speech-to-Text Captioning

Meet our next guest, Jennifer Schuck, current Board of Directors Chair and Founding Member of Global Alliance Speech to Text Captioning. Global Alliance is a nonprofit corporation whose purpose is to be the leading professional authority on speech-to-text captioning, representing all captioners, consumers, and industry.

GLOBAL ALLIANCE

It has been two years since the Global Alliance of Speech-to-Text Captioning was founded for the purpose of bringing together the captioning community to empower consumers who rely on captioning. There is no other organization that brings professionals, consumers, advocates, and the industry together to effect change. It is easy to think “I’ll wait to see what this group does before I join.” Often this means everyone is waiting and no one is joining and not a lot of work gets done. An organization is only as effective as its members. So with few members, the change is limited. There is much about the captioning industry that needs to be changed, but we need everyone’s voice to do it! Don’t wait for someone else to make the change you want to happen. Be part of the solution. 

Quality Captioning, it matters!

COVID-19 has changed our world in many ways, including bringing to light the magnitude of how inaccessible our world is to communities with disabilities. Quality captioning is equal access. Collectively we can educate every day to show how universal design principles make the world inclusive for communities that have been an afterthought or excluded entirely. Providing “captioning” cannot just be putting words on a screen so you can check an item on a to-do list. Those words must be accurate and actually provide accessibility. 

The Global Alliance has created the NCSP, or the NER-Certified Speech-to-Text Provider, certification. With this certification, we’re setting the quality standard for realtime captioning. This certification is available for all captioning methods, including automatic speech recognition. A quality standard for all methods of captioning is critical. With the advancement of technology, each captioning method has a place for equal access, but all of those lanes need to meet a quality standard, which they currently do not. Without that, captions can cause confusion, misinformation, and frustration for the consumer. 

“Be the change you wish to see in the world” – Mahatma Gandhi 

Visit speechtotextcaptioning.org to learn more, view our events calendar, or join as a member. 

Captions fill in the gaps.

Chelle: While I appreciate assistive listening devices (ALDs) and systems, there are many of us with severe and profound hearing loss who cannot completely benefit from ALDs alone. Like attending plays at Salt Lake Acting Company, I hear more with captions. With ALDs, I pick up sound but it’s not enough to compensate for my hearing loss. CART/captions fill in the gaps for me.

During the pandemic, CART was in high demand and finally got its due by being used a lot for online meetings and classes. It was hard to get CART on short notice. I was happy for the CART profession but it was darn hard to get true CART! Court reporters were used to fill in with “CART” but it was different from what we were used to. At first, court reporters used a different platform that could be difficult to get into, which often held up meetings. Captions were also broken down into seconds and hardly ever a full sentence. I found myself zoning out after half an hour. We offered advice as a community and in the end things improved. Training specifically for CART is needed. We like to read fluid notes with complete sentences and punctuation. I’m glad to see Global Alliance is offering certification for CART services.

Jen’s message above is important. We ALL need to participate to make changes. There’s power in numbers. The stage is set, it’s up to us. 

Consumer Captioning Advocate

Michele: As a Consumer Captioning Advocate for over eleven years, I have made a few discoveries:

  • You can never have too many places to network with others who are working toward quality captioning and its universal availability.
  • Surrounding yourself with people who know more than you, or who know the answers to the questions you will likely be asked while advocating, is invaluable.

Consumers, providers, technical and legal experts, and industry leaders are all in the movement for quality captioning together. The world doesn’t yet understand how much quality matters in captioning, or how important captioning is to the Hard of Hearing (HoH) community. CART, which uses live stenographers, is the gold standard of speech-to-text captioning, and it is what more than 95% of people with hearing loss need for full and equal communication access in their spoken language.

Captions are Access to Communication

The ADA (Americans with Disabilities Act) recognizes CART as a reasonable communication access accommodation for the Hard of Hearing. CART provides communication access in exactly the same way as ASL Interpretation does for the culturally Deaf. 

I consider organizations like Global Alliance to be clearing houses for anyone with a stake in speech-to-text captioning. We learn a lot from one another, and when you have a mixed group collaborating to reach the same objective, each person arrives at a better understanding of the other’s role in the movement. And, a collective voice often makes a bigger impact.

Global Alliance Speech to Text

Julia: As a CART provider, I am excited to have an organization come into existence that is all about helping the US move forward with a better license option for captioning/CART. Though my test anxiety is to the extreme, I will be signing up and looking forward to this certification. 

If you are a CART provider, captioner, voice writer, TypeWell writer, or ASR (Automatic Speech Recognition) app inventor go to Global Alliance and help us to come together and support consumers in whatever their needs are.

Consumers, please consider advocating for captioning. There are too many HoH people waiting for others to exact change. It will take all of us asking for what we need to make lasting change. Global Alliance has a wonderful Guidelines for Captioning Services document on their website to help get you started on asking for what you need. The document will help you better understand the various forms and methods of captioning.

Become a Global Alliance Member


Consider becoming a member of the Global Alliance of Speech-to-Text Captioning, and if you need more help, contact Hearing Loss LIVE! and we would be happy to assist you further.

View our companion podcast with Jen Schuck of Global Alliance. Find the transcript on our BuzzSprout page.

If you liked this post, try CART/AI Captioning to learn the difference between CART services and automatic speech recognition. Also try InnoCaption who uses CART providers for their services. There are also Open Captions for Live Theatre.

.