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The New Norm with Hearing Loss

This new norm with hearing loss can and often leads to an identity crisis. Who am I now that I have a hearing loss? What happened to all my skills? Will I ever be the same? How do I find a path back to my level of skills prior to hearing loss? Can I even do that? 

What happens if one person didn’t understand the communication error? A whole cadre of mis-communication can happen very quickly and errors can result in some haunting experiences. These experiences become the new norm. 

Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

The New Norm with Hearing Loss themed meme:
Picture: Black background with green flames along the left side. The 3 leaf logo of Hearing Loss LIVE! cupped in a flame. A picture of stairs leading up to a light with lots of vegetation on the side walls.
Green text: Rediscovering Who I am with hearing loss. 
@hearinglosslive
Moving Forward

These questions become paramount in rediscovering who I was with hearing loss. The path is NOT back but forward. What are the skills I need to communicate now with hearing loss? How do I find those skills? Am I capable of using those skills? 

All of these questions lead to – “Who am I now?” The obvious answer to most people is – I was the same person as before hearing loss. That isn’t quite true. With hearing loss I lost receptive language, now I needed new techniques to become proficient at conversations again. How do I do that?

Communication is how we project identification of self.

 How does that change the understanding of ourselves? I no longer knew who I was or even how to communicate with others. It becomes a quest for understanding of loss and the effects it has on  communication. A search for new techniques and receptive language. I became so discouraged that I was enmeshed in anxiety and depression. 

A new identity develops during this time period. An identity with hearing loss and all of the consequences of not having receptive language. (The younger the person is when hearing loss occurs; the easier the adjustment. They are still exploring their own identities. Hearing loss is who they are already, it’s incorporated into their identity.)  For those who have already established their identity, it becomes a major life crisis.

The path is not easy. 

Some try on the identity of culturally Deaf, but that doesn’t fit a person who is English based in communication. They can feel ostracized by the very community they are trying to identify with. This identity crisis becomes worse when some individuals try to learn ASL and are unable to achieve proficiency for communication. This effort to fit in is another failure which can cause more confusion.  I tried all of these strategies:

  •  Private tutoring for ASL 
  •  Deaf organizations for assistance but was told they are only for Deaf, not HOH/deaf. 
  • The audiologist – they said they did not get paid for rehabilitation so they were not able to help me. 
  • HOH agency and they did not have programs for teaching me how to live with no receptive language. 
  • Classes for ASL, even graduate level ASL classes did not give me fluency. It should be noted that fluency in a foreign language is almost always achieved in childhood, not adulthood and not with classroom education.
  • Psycho-therapy. I was sent to a specialist for the “Deaf”; not the hard of hearing.  There were many mis-cues due to my mis-understanding vocabulary.  I heard the therapist say I was missing “intrinsic learning”.  For years I thought she was inadequate to the task only to learn I heard it wrong. (She said incidental learning.) I did not check my understanding with the therapist. Of course I THOUGHT I understood. 

I lost years in my struggles to understand with missing sounds.

In the most unlikely place, I found answers.

It was my vocational rehabilitation counselor who began teaching me how to live with hearing loss. It wasn’t an easy transition.  With no structured program it was a struggle to teach me how to communicate effectively.  Three years later with hours of teaching and technology I can now communicate.

Black background green flames along the bottom of the meme. A green hand drawn heart at the top outlined twice. 
Green text: People with hearing loss have big hearts. We want to see each other succeed. Find your people. 
@hearinglosslive

Two years ago, I met Chelle Wyatt, HOH Advocate, in person thanks to a mutual friend. That’s when I learned my confusion was normal. Here was someone who was HOH and had gone through much of what I had to endure. She  learned to thrive with hearing loss. I wanted to thrive so I began the journey to reclaim my identity and my life. Next, I took the Hearing Loss LIVE! lipreading classes. On top of that, I found a therapist who was willing to learn how to communicate with someone who has hearing loss – don’t look away, don’t say hmmmmmmm, correct any miscommunication immediately and stay within 3 feet of me. (See the 3 Golden Rules for more information.)


Re-finding our true selves

Compensation skills can be learned. Communication skills are learned skills, we can learn them! Communication is just one way we identify ourselves. It might be how we are judged by society but it is NOT who we are. I knew my skills were still alive, but I could not find the pathway to connect them from brain to conversation. Receptive and expressive language are directly related. If I can’t understand the conversation, I can not express coherent  ideas. I have knowledge, but no way to connect what I know with what I can’t hear.  

The New Norm

There wasn’t a program for rehabilitation for HOH. There were no agencies to teach me how to communicate again. I found my tribe. Chelle and Julia taught me how to do “workarounds.”  They accepted me as a HOH person and taught me skills to survive.  Jack Clevenger, another HoH advocate, supported me in my clumsy attempts to communicate. (He introduced me to Chelle one day.) A priest and I spent hundreds of hours explaining concepts and strategies for communication.

Black background. Green flames along the bottom. 
Green text: Hearing loss is not who I am. It's how I communicate.
@hearingloss live
3 leaf logo in lower left corner.

My VR counselor helped me find solutions and technology to use to communicate. She fought against the dominant paradigm for  me.  Dr. Ingrid McBride, Audiologist, found solutions to my assistive technology (AT) needs and made sure the accommodations were correct for my hearing loss. She assessed my hearing loss, ordered the right hearing aids and adjusted them so I was immediately successful with them. She and I began teaching skills to HOH.

With the help of an supportive friend, I learned how to be by myself at night with hearing loss. He kept me company the first few nights and helped settle my fears ensuring me I was safe with current technology. (Video calls are great for people with hearing loss.) Chelle, Julia, my vocational rehabilitation counselor, audiologist and friends, I learned to communicate again. With new strategies and technology, I was able to access my knowledge and use it.

Chelle and I just gave a workshop to NASW-AZ, a major achievement for me! I went from no receptive language, depressed, isolated, and no identity to being able to interact with an audience of many people.  

We can be who we  are – sometimes it just takes a village!

You won’t want to miss Hearing Loss LIVE!’s upcoming podcast with Gloria Pelletier. In this podcast, we discuss how it happens and how to proceed through this kind of identity crisis. It comes out April 11th on our YouTube channel and other podcast streaming platforms. It’s available for free for one week, then we mark it private for our Workbook Packages. You can find transcripts on our BuzzSprout site.

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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.

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Connections Hard of Hearing Personal advocacy Tribe

Hearing Loss Community Members: Humelan Hearing

Meet our hearing loss community members. Why? Because they provide valuable resources and inspire us. Spreading hearing loss awareness is going to take a lot of us working together and as individuals. Connections in the community provide more resources and ways to get the word out.

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Connections Hard of Hearing Hearing Loss Conventions Tribe

Hearing Loss Convention Fun

Hearing loss conventions are so much fun! You meet some of the best people in the world and learn things too. Both Julia and I (Chelle) have been to several conventions and we have have a good time. As we prepare for our journey north to Vancouver, Canada for the SayWhatClub annual convention, we thought we would share some past memories with you.