Someone recently asked me why I use the term hearing loss in my advocacy work. I can’t remember if they preferred deaf or hard-of-hearing or some other term, but they took offense at my use of the word “loss.” It’s a fair question, and a very personal one since we all experience hearing difficulties in our own way.
People born with hearing loss may not perceive hearing loss as a loss because, as one person said to me, “How can you lose something you never had.” Some people proudly associate themselves with Deaf culture, using sign language to communicate. Others embrace deaf gain—the idea that deafness is a positive in their lives.
But for me, the term hearing loss feels right—because for me, hearing loss is a loss.
Hearing Loss Disrupted My Life
I first noticed my hearing loss in my mid-20s when I was in graduate school. Pretty quickly into the first semester I began missing things in class—a comment that was made as an aside or under’s one breath. Sometimes the entire class would burst into laughter, and I would be left looking around trying to figure out what was so funny.
It was a deep and powerful loss.
- A loss of freedom to converse
- A loss of confidence that I could walk into class and participate fully without accommodations
- A loss of energy because understanding speech now took so much work
Yearning for the ease of communication that had once been mine, I battled stigma, keeping my hearing loss a secret from everyone. This prevented me from asking for the assistance I needed. Eventually I began wearing hearing aids, but it wasn’t until I met other people with hearing loss that I felt less alone with my struggles. I learned that I didn’t need to shoulder my hearing loss all by myself.
Over time, I began to self-identify and ask for the assistance I need. Today, acceptance and self-advocacy help me to live my best life, despite the challenges of hearing loss.
There Are Silver Linings
Living with hearing loss is a challenge, but there are silver linings. Perhaps these are part of the deaf gain experience others describe.
The first is meeting people I would not otherwise have met. Holly Cohen discusses this in We Hear You, our hearing loss documentary. My hearing loss peers have become trusted friends and an incredible support network. These relationships make my life richer.
I have also developed greater empathy for others. Hearing loss is invisible, as are many conditions. I hope people will offer me compassion and grace when I struggle, and I try to give others the same benefit of the doubt. You can never understand all that a person is facing just by looking at them.
Lastly, hearing loss has given me purpose as an advocate. Every time I self-identify at a movie theater or ask for captions on a webinar, I am advocating for us all. The same is true for your efforts.
Despite the silver linings, there are times when I feel the loss of my hearing keenly. Like when I miss the punch line of a joke or feel exhausted at the end of a long day of meetings. Or when my tinnitus acts up and I notice my family reminding each other to speak up so I can hear. I might feel guilty or tired or sad. Thankfully, the loss is one that I have learned to accept.
Readers, do you think of your hearing loss as a loss?
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It is a loss to me,too. I have always had the problem and as I get older it gets worse. I just say I am hearing impaired and point at my ears to show I have aids. I say I might not hear and I am not ignoring them. The masks make it next to impossible to hear most people.
The masks are the worst. Thank you for sharing your thoughts.
Are you a candidate for cochlear implants? My story is similar to yours…lifelong struggles to hear and understand speech with hearing aids. Am now bilaterally implanted and though it’s far from normal hearing it’s a huge improvement. In our mask wearing world I realize my CI processors have enabled me to understand much of what is said which would have been impossible with just my hearing aids.
So glad the CIs are working well for you! I am not a candidate at this time, but I understand they are life changing! Thank you for your comment.
Thank you Shari. For me is it is a potent life altering loss. I am confronted by it all day every day. It is what I do. Others see my devices – hearing aid and cochlear implant and think my hearing loss has been found, or fixed. Of course that is sadly not true. The HA amplifies a seriously abbreviated spectrum in one ear while the implant, in partnership with my brain, creates a facsimile on the other side. Evan so, together these devices enable me to participate in life at a level that would be impossible without them. I am profoundly grateful for what they give to me and at the same tine keenly aware of my continuing limitations.
Thank you Jerry for sharing your feelings on the subject.
The loss of my hearing has impacted my life tremendously. If a normal hearing person makes a derogatory comment on hearing loss, I take offense for all people with hearing loss.
Thank you for sharing your thoughts.
My hearing loss is definitely a loss as I was born with good hearing and have gradually lost the ability to hear some sounds without the help of hearing aids. I am also ‘happy’ to describe myself as hearing impaired or hard of hearing as those terms describe me well at the present time. I do not regard myself as deaf because with help I am able to make sense of speech – although the current wearing of masks has made this extremely difficult. I think people should be able to use terms to describe their hearing/non-hearing situation that they are comfortable with. What does really annoy me is when some people are intolerant about the terminology we use. I am not happy to have hearing loss and wish that I could hear properly but I respect those who say they are proud to be Deaf – although I cannot understand why anyone would be. We should all be more tolerant and understanding. Not being able to hear well affects people in so many different ways. One size does not fit all.
I agree! And well said. Thank you for sharing your ideas.
Hearing loss is a tragedy no matter how I look at it. It is an amputation. I have failed to ever see a good side to it. I did a podcast interview with Robin Chisholm-Seymour at cochlearimplantbasics.com where we discussed the issue of mourning the loss of one’s hearing.
Mourning the loss is critical. Thank you for sharing your thoughts.
Well said. I am implanted on one side only (Medicare only pays for one). My experience closely mirrors what you and Jerry express in response to Shari’s blog. Most of my conversations with new acquaintances start with “I’m hearing impaired,” and I point to my processor and coil. Also masks are the worst impediment to communication ever.
Happy New Year to all of my ‘hearing impaired’ friends!
Happy new year to you! Thank you for being a part of our community.
I have read and enjoyed your blog for years. In addition I deeply enjoyed the recent movie you were a part of. I look forward to your book with Gail H. This particular blog touched a real spot in my heart. I was born with normal hearing. My loss began gradually in my 30’s and now as an 80 year old Im profoundly hard of hearing. I am not a cochlear implant candidate. I have two outstanding, expensive hearing aids. I advocate as much as possible and Im deeply grateful to have captioned television and devices in movie theaters. However, losing my hearing is truly a LOSS!! My life is profoundly different than it would be if I had normal hearing. Heartfelt thanks for all of your writing and advocacy.
I am so glad the piece resonated with you. Thank you for your kind words and loyal readership!
Great topic of discussion! I’m enjoying reading the comments.
I lost my hearing at 15 months, and while I can’t remember the event or what normal hearing is like, I still consider it a loss. I can hear pretty well in low frequencies, and enough such that people don’t always realize I have a problem. But, living with a hearing spouse, I’m painfully aware of what I’m missing on a daily basis. He can understand song lyrics, high pitched beeps in the house, and the quiet meow of our kitties. He doesn’t need captions on TV. He can understand pretty much everybody he talks to on the phone, while I struggle with fast talkers or people with accents. I absolutely depend on him and my hearing aid and CI to get through this world, so yes, it’s a loss.
On a related note, I wear glasses, but I don’t consider my diminished eyesight a “loss” because they fix the problem.
Yes, good point. I feel the same way that you do about my vision, also because my glasses/contacts fix the problem. Thank you for sharing your thoughts.
Yes it is a loss in every way,but if I take a look at myself it has made me a better person so yes there is a silver linning to it
Great perspective. Thank you for sharing it.
My hearing loss is really a loss for me at times!! I am a senior citizen, married for over 50 years! I remember being in bed with my hubby and in the evening talking about our day and it the morning talking what we were going to do that day – that is all lost!!!!!! Sad but true! Once in a while while in a store the clerk says something, dh then says that I cannot hear – not sure this is good or bad!! Glad he is with me to help and mad that I did not hear what was said! The masks do not help me at all for hearing! I have aids now for about 10-15 years, they do help , but, but, but. Yes, yes it is a loss, most people are kind but some are not! Got a phone with captions, the captions are not always correct, like when making a dr appointment, had to call the clinic back as the time I wrote down was not the one written out for me – I was right and the captions were not ( is there help for the captions??)
I appreciate all here! Have A Good One !l
Thank you for sharing your experiences.
Yes , I too feel my hearing loss. It started in my 50s and has continued to go down. I am now pushing my 80s and widowed. My dog is my doorbell even before I hear my Ring doorbell.
I have expensive hearing aids, try to be an advocate for others by sharing my loss and aids I have added several aids to help me…911 and EMTs notification of my loss, neighbors, friends. Caption call phones, ADA provides one free. I have a name tag with my name and a brief notice telling clerks and others to please speak directly so I can read your lips. My latest find has been ZOOM courses who provide free CC. That has really helped my art classes this past two pandemic years.
And i use my phone to read messages etc. Yes it’s easier now for assistance, but it still is a loss!
Thank you for sharing your perspective.
Shari, It’s complicated! Everyone is different, Some start normal, others with no hearing. Circumstances regarding upbringing like aids, implants, assistance or none make hearing level hard to classify. Good luck to anyone who is tasked to develop “Legal Standard” of hearing.
Looking forward to your upcoming book. Should be interesting as your “Living with hearing loss always is.
Bruce
It is complicated! Thank you for sharing your thoughts.
When my husband was a navy seal his hearing was tested and they said he has exceptional hearing.I asked him if he considered it a gift He said at times when he rescued a couple of our kids from drowning when they were little. I on the other hand have close to profound hearing loss in both ears There are times when I consider it a loss when I have to ask people to repeat themselves as I don’t understand them I do wear expensive hearing aids which improve but don’t perfect the problem. But at night when my husband and I go to bed he has to wear earplugs and his snoring doesn’t bother me. it’s a matter of perspective I guess
Absolutely! Attitude is everything. Thank you for sharing your thoughts.
I refer to my hearing loss as a “hearing disability.” Why? Because it is the most legally correct way to describe my condition and it reminds others that I AM disabled and I have rights to “equal access” under the Americans with Disabilities Act. And I probably wouldn’t care at all about my inability to hear were it not for the fact that I am still trying to work and earn a living, which means that I need to communicate orally with others every day — often over the phone, which is where I have my biggest problems and encounter the nastiest, rudest, and most inconsiderate treatment (including hang-ups) by others who have been blessed with good hearing — and most often by government employees or customer service representatives who are being paid to deal with the public — including the hearing impaired public. I look forward to the day when I can just retire and become a hermit and use my caption call phone at home for all of my telephone needs. Unfortunately, at present, that is not an option for me.
Perhaps you can use a captioned phone at work as well? Employers are required to provide accommodations in many situations. Thank you for adding to the discussion.
Thanks for your reply. Believe me — I have looked into this, as it would make my daily work-life so much easier. Unfortunately, there is no product out there that is guaranteed to work. Plantronics makes a device that can connect to another gizmo that can connect to my hearing aids, but the Plantronics device is supposedly “custom made” (Really?) and they accept no returns if it doesn’t work — and the cash outlay is several hundred dollars in addition to what I would have to pay the hearing aid company for the other gizmo to connect to my hearing aids. With so many inter-connections I seriously question the reliability of this solution. I have spoken to my audiologist about this issue — which is how I came to acquire the Caption Call phone for home use. However, it seems that my audiologist is mostly just interested in selling hearing aids — the “quick fix” — rather than helping people solve problems and lead more fulfilling lives.
As for my employer being required to provide accommodations, I am self-employed, so it really boils down to cost and reliability.
It is certainly frustrating. You have probably looking into connecting your phone and devices via bluetooth? That works for many people as well. It is a bit of trial and error. Good luck to you!
I first got hearing aids when I was in my mid-thirties and I am old now. My hearing got worse and now I have moderate to severe hearing loss. I remember the “old days” when I could go to a concert and hop around beforehand to greet friends in the audience. Now, frankly, I sometimes hope I won’t see anyone I know. Yesterday I encountered a friend in the elevator of our condo complex and she told me laughingly about what she had been doing. I asked her to repeat (behind her mask) and she did. I didn’t understand so I just laughed too. Yet I am very grateful for my life, love HLAA, and am a strong advocate for people with hearing loss. Many people are walking around with burdens that we all can’t see. This is just one of them.
Well said! Thank you for sharing your experiences with hearing loss.
What a great discussion. I think the word “loss” itself isn’t always a bad thing. Many people experience weight loss as a good thing for example. Oftentimes having less hearing is a benefit called (silver linings, deaf gain, etc.) For example, when our doorbell was malfunctioning and driving my hearing family up a wall, I simply muted my hearing aids and I wasn’t bothered at all. I’m learning ASL and although I’ve always wanted to be bilingual, I don’t think I would have ever gotten around to it without my hearing loss. I do have to work twice as hard to communicate with hearing people now especially when I don’t have accommodations but I’ve learned that this acts as an excellent filter and makes assessing character much easier. Overall I’d say it is a gain even though I use the word loss.
Thank you for sharing your perspective.
Everyone has their right to identify their situation as they see fit. I have full respect for people who are Deaf, who belong to a vibrant culture, and do not regard their deafness as a disability. Having lost most of my hearing as a young adult, I definitely consider it to be a disability. At the time, I tried to learn sign language but quickly discovered that I was going to have to turn to technology and other coping mechanism to deal with the loss of my hearing. Thanks for all the work you do.
Thank you for sharing your perspective.
I don’t have hearing loss, but I grew up dealing with the everyday losses that came with having Cerebral Palsy. I felt a sense of loss and grieved every time I found out that there was another thing I couldn’t do because of my disability. Like you this gave me a strong sense of empathy for people with any kind of disability. And then I lost my husband Michael after twenty-two years together and felt another kind of grief altogether. Life is indeed full of loss, but I’ve found that meeting the feelings of sadness that comes loss head on is the only way to make it out on the other side. Thanks for a well-written blog on an important topic.
Well said! Thank you for sharing your perspective.
I find it a tremendous loss. If only we could lose the things we don’t want to hear–noise in restaurants, those screaming singers on TV, those high -pitched wails from children in the supermarket that go right to my hearing aid. and since I got my cochlear implant, which is good, but I still can’t hear! Sounds like shopping baskets banging together must be at a frequency that the song makes me dizzy. when I finally realized what caused it I could live with it, but at first it was scary. I often feel sad, almost teary, about the loss but realize that a lot of people have much worse things to bear. The worst thing is being unable to hear in social situations when more than one person is speaking, and no matter what you say, you can’t ask people to speak one at a time whenever they are having a good time. The second worst is when you call a help line and you can’t understand the “helper” because they have an accent , to, as happened to me yesterday, refuse to speak louder, slower, and clearer. I hope they fixed the mistake in my bill, but I was only able to guess at what the the soft -voiced girl was saying.
Thank you for sharing your emotions too. We can all relate and support one another.