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Shame/Stigma/Denial

Shame

Hearing loss is stigmatized by society and definitely by those of us who experience it. People who are Hard of Hearing (HoH) are sometimes looked upon as less than, and no one welcomes being different when there is stigma attached. And, because hearing loss is an invisible disability, it is easy to hide.

The fear and shame of being judged as less than or different robs us of what we need to live fully with hearing loss. Once we can identify what drives our shame, we can work on figuring out how to take control.

Chelle at age 23 with her babies.

Chelle: In my mid 20s, I hid my hearing loss. My first pair of hearing aids were the in the ear canal. I  turned them on and off and controlled the volume with the tip of my finger. My audiologist helped me hide my hearing loss and I rarely brought it up.

Later that year, or maybe early the next year, I went on a date for the first time with my hearing aids. I was more afraid of missing information than I was vain so I wore them. Throughout dinner, I felt sure my date saw my hearing aids and was being polite in NOT bringing it up. The whole time, I agonized over whether or not I should bring up my hearing loss up. 

After torturing myself through dinner, I brought it up on the drive home. I had to get it over with. “You probably noticed by now, I wear hearing aids.” He replied he hadn’t noticed and he leaned across the seat for a closer look. “You do have hearing aids!” Ten minutes later, he asked me for another date. Obviously no one was looking at my ears back then so I quit worrying about them being visible.

I married the guy. He was very good about my hearing loss and would introduce me to others with my hearing loss. “If you are talking to her and she walks away, it’s because she didn’t hear you.” Or he would recognize my bluff look and laugh telling the other person, “She didn’t understand a word you said, you need to face her when talking.” Though horrified, I learned most people were helpful.

Years later, with hindsight, I recognized why I feared my hearing loss so much. My first husband was impatient with repeating, used my hearing loss against me, and turned off captions on the TV all the time because they were in his way. I let him color my perspective of what hearing people thought about hearing loss; that it was annoying.

There are bad apples out there; people who won’t accommodate you. They are few and far between so I learned to work around them, or get away from them. Don’t let those people ruin your future. Most people are willing to help.

Julia and her grandmother.

Julia: Over the years, I’ve heard people’s stories about why people hide their hearing loss. My grandmother hid her loss so well, people assumed she was starting to have dementia until I explained it was a hearing loss. (At this point I was helping her get to events she enjoyed.) When communication became difficult because of her bluffing, she wasn’t invited to parties, bridge games—too many events to name. I am unsure if she ever realized what was going on, but I remember her overwhelming sadness one day as she explained that her hearing aids no longer helped and how devastated she was to be deaf. She passed away shortly after. I often wonder if outcome could have been different had she faced her bluffing sooner in her life?

Society has a hard time dealing with invisible disabilities and continues to grapple the stigma perpetuated by obsolete terms like deaf and dumb. Who would want this label? Why are we ashamed of simple communication needs? To ask for accommodations? Why bluff? I am full of questions I can’t answer. Maybe you can share some of the reasons you hid your hearing loss, or why you continue to deny it

Hearing folks. One size does not fit all.

Employer’s, large corporations and state agencies, I encourage you to attend a workshop on hearing loss. Learn about the needs of the HoH and the tools they use, you may find some that help you too! You took the time to learn how to incorporate American Sign Language, take the time to learn how to help the 18% of Americans who are HoH. They may be afraid to come to you and you don’t see the disability. Start a conversation, let’s get this out in the open.

Michele: Starting out, I didn’t consciously hide my hearing loss. It was invisible (I didn’t wear hearing aids as a child), no adult to advocated for me, and I had no idea how to be upfront about it. 

In the 1960s and 70s hearing loss wasn’t talked about a lot, so I grew up considering myself a hearing person who had trouble hearing. Unbeknownst to me, my brain found other ways to take in the information it needed to make sense of life, which meant I coped pretty well.

Also, I witnessed the person I most admired and loved—my deaf grandmother, a very capable lipreader (fingerspelling was the extent of her sign language)—manage life much better with hearing loss than most of the other hearing adults in my family. 

I developed the same matter-of-fact and practical attitude that my grandmother had.

Michele and her date (now husband): Sophomore year Homecoming Dance. Love those plaid pants of the 70s

Then along came junior high and high school. 

Though I didn’t consciously attach any stigma to hearing loss, there was plenty of embarrassment and humiliation, which are elements of shame.

The first time I remember being embarrassed by my hearing loss was having friends laugh at my singing the wrong lyrics as we sang along with songs on the radio. I did talk about my hearing loss with my closest friend, but no one else knew. I was taught to keep things to myself to avoid burdening others, so I applied that to being HoH.

Dating was a challenge. It all starts out fun and exciting; then the sun goes down. Riding in a dark car with a boy is torture for a lipreader. And again, I didn’t know enough back then to share that I had a hearing loss, so I faked it.

It took me a long time to stop dreading situations where I knew I might be embarrassed or humiliated. I took control by educating myself, learning how to self-advocate, and putting an end to faking it.

WHAT DRIVES YOUR SHAME? Why do you hide/deny your hearing loss or avoid difficult hearing situations? Is it the fear of humiliation and embarrassment? Have you been made to feel that accommodating hearing loss is an inconvenience? Do you lack self advocacy skills? Not wanting to be different or a burden?

Whatever the reason, it’s time to identify and stop the behavior that feeds shame. If you need help, don’t hesitate to ask. We founded Hearing Loss LIVE! to help others find the kind of information and support we wish we had been able to find for ourselves much sooner.

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