Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality, or person.” It often arises from external forces like prejudices, stereotypes or societal norms, but it can also come from inside ourselves — perhaps as we internalize the negative perceptions of others or suffer from a generalized fear of being different from the norm.
Stigma surrounding hearing loss can make us afraid to admit that we have trouble hearing. The shame and embarrassment of stigma drives us to behave in unproductive and unhealthy ways, like neglecting to ask friends and family to use communication best practices or refusing to seek out the professional assistance we need. It may lead us to avoid socializing or prevent us from applying for a deserved promotion. Over time, these behaviors can lead to isolation, depression, and a plethora of health problems.
We must nip hearing loss stigma in the bud. But how?
Hearing Loss Stigma Can Take Many Forms
Stigma takes many forms. It can be overt, like when people make jokes about people with hearing loss being stupid, or old, or when people smirk and reply “What?” whenever you mention your hearing loss. These actions are rude and likely a result of ignorance. As hearing loss becomes more common, these overt actions may begin to fade away.
More often with hearing loss, stigma is subtle — a gentle exclusion from a conversation or outing because of the extra work required to make sure that you can hear. We may impose it on ourselves by skipping out on a social event or dinner with clients for fear that we will have trouble hearing. It can occur at the doctor’s office, when medical personnel address questions to your family instead of to you, treating you as if you are incapable of understanding when your only real issue is hearing loss. We must rely on self-advocacy and education to change these behaviors.
My Battle With Hearing Loss Stigma
Hearing loss stigma was a significant force in my home growing up. My father had hearing loss, but never discussed it, creating an unmentionable topic that festered and weakened our family relationships. He never asked us to use communication best practices or to rearrange the seating at a meal so he could hear better. We didn’t know how to help him and so we did not adequately try. I look back on this with regret. His fear of discovery and shame about his hearing issues eventually drove him into isolation and sadness, tearing our family apart.
When I developed hearing loss as a young adult, I followed in his footsteps, hiding my hearing loss and living with denial and secrecy. But once I had children this all changed. I saw them watching me laugh at jokes I hadn’t heard and faking my way through conversations — just as I had watched my father do. I knew something had to change. I needed to break the cycle of stigma before it infected my children as well. So I did.
Breaking The Cycle of Hearing Loss Stigma
Breaking the cycle of hearing loss stigma takes hard work and determination. Each of us must battle it individually to some degree, but we can also take it on together, as a hearing loss community. If you are struggling with hearing loss stigma, or want to see it wither away, here is what you can do.
1. Get educated.
Knowledge is power so be sure to get your hearing tested to understand the type and severity of your hearing problems. Learn about the variety of hearing assistive technologies that are available including hearing aids, cochlear implants, and assistive listening devices like pocket talkers and Apps. More choices will be available when the new class of OTC hearing aids hit the market in 2020/21.
2. Understand your specific hearing challenges.
Everyone’s hearing difficulties are unique so each of us must learn to identify which listening situations are most problematic and, through trial and error, which adjustments or accommodations are most helpful. Then we must take the next step: Be brave and ask for and utilize the assistance that we need.
3. Make peace with your hearing loss.
This was a tough one for me but it is an important one. If we seem comfortable with our hearing loss, others will be too. We must forgive ourselves if we miss some of the dialogue in a social situation and pace ourselves so we can maintain energy for future conversations. And if something goes wrong, that is okay. Some of the mis-hearings can be hilarious if we let them be.
4. Normalize it.
Don’t let hearing loss be an unmentionable topic, like it was in my house growing up. Do the opposite. Talk about your hearing loss as much as possible — when you meet new people or are in an unfamiliar group setting. You will be amazed how many others will relate to your experiences.
5. Be your awesome self.
Live your life as you see fit, without reservation or fear. Successes will help you will build confidence and show others that people with hearing loss are capable, smart, and uniquely talented, just like everybody else. Failures will provide opportunities for learning and growth.
6. See that you are not alone.
Stigma thrives when we feel different. Seek out hearing loss peers that can relate to your frustrations and provide comfort on your most difficult hearing loss days. At my first Hearing Loss Association of America (HLAA) meeting, I was amazed at the wonderful things other people with hearing loss were accomplishing in their lives. This gave me hope that I too could lead a dynamic and happy life despite my hearing issues.
7. Advocate for change.
Be the force for change that you would like to see in the world. Ask for accommodations at work or at your place of worship, at museums and entertainment venues. And when they are available, utilize them with pride. The more accommodations are used, the more likely their prevalence will expand. Self-advocate with your family and friends. They may not know you need help if you don’t ask.
Readers, how do you combat the stigma of hearing loss?
It never fails, Shari, that the truth seems always the easiest to recognize and the hardest to implement. I never connected the dots between the failure to be clear about what I need in order to understand and the stigma of hearing loss: that my failure contributes to that stigma. It’s like me being afraid of the ugly specter my own hearing loss. Not laying down some ground rules for my understanding is, for want of a better word, denial. That’s the ugly truth. Too often it describes my behavior. I don’t like it at all.
Thanks JH
It is not easy, but we keep fighting the good fight. Thanks for your ongoing efforts Jerry.
As Shari says, stigma is primarily a societal (cultural) dynamic that affects us – it’s not anything “bad” about us. We all have a range of skills and strengths. Yet we often internalize it, and it’s hard at times to keep going, every day explaining to others, with patience, courage and extra energy. Stigma comes from years and years of mis-perceptions that, with hearing loss or deafness, we are “dumb/mute” or less intelligent, etc. That we don’t have a real language! (not true of course). All the suggestions above are great. Stigma may never disappear completely (people are fearful of “difference”) but the more we raise awareness, educate others, and advocate for ourselves, and in groups, there is hope! 🙂 (As i force myself out tonight to a dinner in a noisy restaurant, where even with modern technology, it’s darn hard and tiring to participate as I’d love to. Yet needs must!) Lauren, CCACaptioning dot org (advocates, not providers)
I guess I am the odd ball I have never felt like m hearing loss was a stigma. I know how I lost my hearing, it was due to my military service and I am proud of my service. And if my hearing is all that I suffered for serving my country is am very blessed.
That is a great attitude! We can all learn from you. Thank you for your service and for sharing your thoughts here.
Atta boy Sir! Thank you for your service and your attitude!👍
I now have bilateral cochlear implants in about a 14 month span. I am grateful for my progress and the world is opening back up. I do have a few hang ups though. I wear my hair short and my implants are quite visible. The amount of questions I get about them and looks of what is he wearing is unreal. People will talk to me like a child or ask if I know sign language. I’m getting used to it but it’s a bummer that’s the first reaction I get. I will figure it out eventually but hope it will never be used against me in some way in the working world.
Hearing loss is not well understood, so for better or worse, those of us with hearing loss are constantly educating others about it. I try to have a good attitude about it and that helps with the frustration. Good luck with your new CIs! Thank you for sharing your thoughts with us.
Shari I’m of the belief that limiting myself from the difficult to hear situations is NOT a stigma. It is my personal approach to my advocacy for my living. I refuse to participate in those situations and I make it clear why.
Now, if we all want to sit in a location that is easier for me to participate, I’m in! Just shoot me a text.
I also make clear that if some one wishes to chat by phone, they MUST text me first to set a a time so I can be in a proper situation to field the call and to hear clearly.
It is important to set boundaries for yourself. Thank you for sharing your thoughts.
I am not really ashamed of my hearing loss, but even after almost 3 years with hearing aids, I have not yet found the way to deal with hearling loss as a teacher in the classroom. The framework in which I teach have been wonderful: I have a small class, and if there are problems with the acoustics in teh room, they move me, but still – with a pack of noisey teens, it’s really hard. I have told them that I have hearing loss, and hearing aids, and that it is difficult for me to hear when they are all chattering at once, and i feel that I often miss things that I SHOULD be hearing as a teacher. For example, when one says something disparaging about another students. I have been coming more and more to the conclusion that I just shouldn’t be in the classroom any more because of my hearing loss. And that really saddens me.
Any suggestions? Recommendations?
I am sorry you are struggling because of your hearing loss. There have been other comments about this on the site, so it must be a particularly challenging situation. I wonder if you could discuss strategies with your fellow teachers. Even without hearing loss, they may also have trouble understanding a group of noisy teens. They may have some suggestions. Good luck to you!
Adele – I am also a teacher and have experienced the same issues. My classroom is an integrated early childhood special ed classroom. When a child screams, it seems to impact me more because the sound is amplified by hearing aids. I have two wonderful paraprofessionals, who repeat things a student says that I have missed. The biggest challenge is educating administrators how my hearing loss impacts how I teach, which I am still working through. As a third year teacher, I don’t have many answers for you except that you are not alone. You can keep in touch and follow my life as a lipreading teacher and mom at http://LipreadingMom.com. Blessings to you.
Diminishing the stigma could start in the workplace. Making a smirk remark about hearing loss can affect your self confidence as well your work performance. Somehow and for some reason people equate hearing loss with unintelligence. Compare to individuals who are overweight, for example, this is typically not the case. If an employee makes a sly remark to an individual with hearing loss, that individual should avoid any thought of retaliation such as getting this person terminated. This will then lead to the lack of hiring of individuals with hearing loss. Instead I proposing that the employer is charged a small fine through the ADA. At this point, the employer can take the fine out of the employee wages or discipline him with a simple reprimand. This fine is just enough to cover the cost of filing and reviewing paperwork. To file a complaint, it’s critical that this individual has a witness to this occurrence. All of this would be anynomous. I don’t necessarily agree with expanding government programs, but this could help dissolve some of the stigma outside the workplace as well. I’ m sure the ADA is overworked and understaffed, but only if there was a way.
Although, I’m not a “squealer,” it just a thought for I’ be been reading posts in the past few months about people being discriminated and stereotyped. It should be noted that I am not an expert in social programs. It just getting old.
I understand what you stated. I suffered so much at my job after I inform my HR and Manager that I have hearing loss. I was treated so unprofessional. I would stand in the back for meetings and just sometimes pretend I was somewhere else. I never felt apart of the team. I gave my resignation a month ago. I am now working with an organization that helps people who have disabilities who are able to work. I am also going to school and learning ASL. My only hope is that the workplace change how they treat employees who have hearing loss .
Do you think my idea is logical and doable?
I am not sure, but it could make things too complicated. Perhaps educating the employees and managers about best practices might have a more positive impact. Thank you for brainstorming ideas with the group.
I recently spoke on hearing loss in the workplace at a large financial company in NYC. I hope that other companies will begin to acknowledge the issue and find ways to bridge the gap for employees with hearing loss. I think education is the key. Thank you for raising this issue.
When I repeatedly fail to understand what people are saying to me in noisy environments I usually apologise, like it’s my fault. But it’s not, I obviously didn’t choose to have a hearing loss. But I don’t want the other person to get annoyed with me which is why I apologise I think. Also when people want to talk to me on the phone I feel like I’m being inconvenient when I tell them that I can’t use the phone because of my hearing loss. I think that these are things that I can work on though. Thanks Shari for talking about this topic!
I understand your inclination to apologize. One other suggestion might be to ask for specific behavior changes to make the situation easier — like picking a quieter environment or doing a call with FaceTime or Skype or a captioned phone. With technology, sometimes there is a workaround that helps everyone. Thank you for adding to the discussion.
I was diagnosed last year with hearing loss. I struggle for a long time to get to the point where I need to actually be tested. I was in denial for a long time. I got my hearing aids last year. I have now accepted that I have hearing loss. I have ups and downs regarding my hearing loss. I am determine that hearing loss does not define who I am. Hearing loss is a part of who I am. This article was beautiful.
Good for you! This is a wonderful approach. I wish you the best of luck on your hearing loss journey.
I am SSD and wear BiCros aids but we know no hearing aid is as good as natural. anyway, about a month ago, I started a new job. There will be a large amount of client facing time as I help with health insurance problems. My supervisor came to me on day one and asked if anything could be done to make things easier. We turned my desk so that my opposite side (good ear) was facing our clients. I told her I had never had a supervisor ask how they could help. Her reply was “we wouldn’t be a very good advocacy agent if we didn’t do it ourselves.” I almost cried. No stigma at work! I introduced myself at a staff meeting recently as we have a large staff that is often not in the office. Person that shares my office said tell them all the cool things your hearing aids do! I wish that for all this week.
How wonderful! Your supervisor is 100% correct. I wish all workplaces were as welcoming and accommodating as yours. Thank you for sharing this positive experience.
Yesterday afternoon I was talking to a lady who works in my local Post Office. She noticed me adjusting my hearing aids to use their counter loop system and she asked me about my hearing loss. She explained that her partner too has a hearing loss going back to when he was a child and he now ears tiny in the ear aids.
She said he won’t get behind the ear aids because when he was diagnosed as a child some years ago, he was fitted with BTE aids and was teased and bullied by other kids because he wore hearing aids.
This affected him to the point now that even if he may get more benefit from BTEs he won’t wear them because of the memories of his childhood experience.
Stigma is a powerful force. Thank you for sharing this story.
Hi Shari,
Thanks for this wonderful piece! I do believe that hearing loss is the last malady on the planet that is “allowed” to be lampooned……even on Facebook’s Hearing Loss Community, from time to time someone will post a comic about how funny hearing loss can be. This would never be OK with race, religion, sexual preference, nor with blindness, physical challenges, mental challenges, etc. John Stuart Mill, the famous British economist once said there are three steps to every new idea…..1) It’s wrong 2) It’s against religion 3) It’s common sense. How true…….I do believe that with time, this stigma will die out too. To make it happen more quickly everyone should read this piece, or it should be given out with each and every hearing aid fitted or sold…..last idea is to get one of the progressive politicians on board. Can you imagine AOC as our champion?
Change is coming. It just takes time. Thank you for sharing your thoughts.
Shari – Thank you for encouraging this discussion. Nearly 30 years after the Americans Disabilities Act was signed into law, many employees continue to hide their hearing loss at work or do not request accommodations for fear of being stigmatized by their supervisors and coworkers. I recently asked some friends with hearing loss if they requested on-the-job accommodations and most said “yes” and received them. Recently, I became more vocal about my hearing loss needs where I work, and now am going through a formal process with my employer to ensure I have the requested accommodations. I have worked there for two years and only this year got the courage to do this. The stigma needs to go away. Please be checking http://LipreadingMom.com for more about this topic, and I hope you don’t mind a link to your post. Blessings!
Good for you for your self-advocacy! It takes courage!
Stigma is there all right. Those of us who move past it and become educated advocates for ourselves (and others) get over it. But, it’s difficult to get rid of stigma when the very industry that are supposed to be helping people get hearing help market denial. Advertisements for hearing aids always emphasize their product is “so small no one will know you’re wearing it”. “It’s nearly invisible on your ear”, etc. That clearly tells people they should hide their hearing loss. Then when someone finally decides they need to be tested and fitted with a hearing aid, they insist on it being small. By so doing, they often eliminate options like telecoils and manual volume controls they will soon find out they wish they had. By then it’s too late to return the hearing aids, so they are stuck with a very expensive product that is so tiny it’s invisible but not as valuable as it should be. Stigma is exacerbated by the hearing aid industry.
Interesting perspective. Thank you for sharing your thoughts.
I never thought of it that way but you are absolutely right. Telecoils were not even presented as an option in my “small” bicros – maybe they arent. But it would be nice to know that. Big discussion with my minister a few weeks ago on his our sound system at church doesn’t interface with newer hearing aids. Wasn’t really complaining, the sound guy was coming to do a tuneup so curious if adding Bluetooth was an option.
I grew up with a mom who had hearing loss early in life. She wore hearing aids at age 7. That was in 1940. She detested them. Her older sister needed aids by her early 20s, in the mid 1940s. My aunt flaunted her hearing aids. Making them fun, she would joke that she was listening to everyone else’s conversations too! My mom would get new hearing aids about once every 6-10 years. She would wear them a couple times & then put them away.
I lost hearing very suddenly in my left ear due to inner ear/brain surgery to remove an acoustic neuroma (slow growing, non-cancerous inner ear tumor). The surgery also left me very unsteady, like walking on jello on good days. Like walking on a tiny boat on big waves OB bad days. It was hard to get used to not hearing on one side. I got a bone attached hearing aid implant (BAHA) but it never healed correctly. I still occasionally use the BAHA but it only helps slightly. It isn’t strong enough because of my rapid hearing loss in my right ear.
4 years ago an audiologist at the ENT I was going to noticed I was reading lips, not really listening to what people were saying. She brought me into her room with my husband & asked if I ever had a hearing aid. We told her the BAHA story & she said, no, for the other ear. We said no. She went & got a hearing aid, put a new dome on it & put it in my ear. Then she started talking. OMGoodness! I didn’t need to watch her! It was amazing! I got a hearing aid a few weeks later. I just got a new one 2 weeks ago because that one was maxed out. I flaunt my hearing aid like crazy. I put tassels or charms on it, I tell people about it, I show it to them! Then, if I take it out & show them and we keep talking, I’m watching their lips. They will usually say,”but you seem to hear me so well even now.” I tell them I sort of read lips. I can guess what they are saying because we’re takings about my hearing aid. When it’s in, I tell people I have a very good hearing aid.
I’m all for showing off hearing aids. I wanted a really fun colored one, like kids can get but they said no. So I have a white one, I wear my auburn hair pulled back on that side & put bright stickers on the behind the ear part and charms on the tube! I want people to NOTICE my hearing aid! I want them to ask about it. I tell them about it & what it can & can’t do.
I want to get rid of the stigma of hearing aids are only for old people. I have another invisible illness, fibromyalgia, along with that decade of unsteadiness. My kids have mental disabilities, autism and fetal alcohol syndrome. Our daughter is affected much more than our son but she looks like a short, typical 17 year old. Her brain & body were swimming in amniotic fluid filled with Russian street drugs & vodka. Her birth mother was a partied. And there’s the stigma…I just told you she is adopted. I didn’t do this to her, her birth mother did. Big stigma. Fetal alcohol syndrome says “mom drank & messed up the kid.” But aren’t we nice, we adopted her anyway. No, we adopted her. Period. We took her from a life of a Russian orphan to a typical American kid. Heck, I could have given birth to an FAS kid, but I couldn’t have kids. So, we deal with stigma all the time in our house & lives.
The big reason to flaunt my hearing aid & Gabby’s FAS? Get rid of the stigma. It’s life, get on with it, love it, live it, enjoy what you DO have.
Sorry so long…
I love your attitude! Getting rid of the stigma is so important. Thank you for sharing your experiences.
In Israel, where military service is mandatory, people will freely say: “oh that’s my bad ear, you know, from shooting” or “served in an Artillery unit so my hearing is a bit messed up.”
When something is normal it is easy to understand. When the person with that experience feels no shame about his or her needs, others tend to willingly accommodate without attaching stigma.
To me it seems normalization is key.
Totally agree. Thanks for sharing your experiences.