Everywhere I go there are people with hearing loss, but they don’t want to be found. They will reveal once I do, but not before, and only to me — not more broadly. I find them at conferences, school events, lectures — always sitting up near the front, just like I do — but silent about the need for the speaker to use a microphone or to not turn his back to the audience. How can we change this mindset?
There are 50 million Americans with hearing loss, so it should not come as a surprise how often I meet other people with hearing loss. Whenever I mention my work as a hearing loss advocate, more often than not, someone will confess his own hearing loss or that of a relative or friend. This is usually done in a hushed tone with a glance or two around to see who might be listening, as if it were a secret. I understand, it used to be a secret for me too.
If hearing loss is so common, why do we still feel so lost?
1. Part of it is the stigma. There remains a stigma associated with hearing loss, more so than with mobility or other physical disabilities. Perhaps it is because hearing loss is often associated with aging. This is not actually the case, as according to Better Hearing Institute, 65% of people with hearing loss are below age 65, but the association remains. The stigma makes people reticent to disclose their hearing loss and to seek treatment in a timely manner.
2. Hearing loss is invisible. People with hearing loss don’t look a certain way. They are scattered throughout our neighborhoods and workplaces and probably spend most of their time with friends or family who don’t have hearing loss. That is why organizations like Hearing Loss Association of America are so important, because they help people with hearing loss find others in their local area coping with the same challenges. You can find a chapter near you here. Thanks to my local chapter, I now have several friends with hearing loss, who provide an incredible support network.
3. Hearing loss can be isolating. Sometimes people with hearing loss choose to withdraw rather than deal with the frustrations of communicating. This does not have to be the case! By alerting others to your hearing loss and utilizing best practice communication tips, people with hearing loss can enjoy a robust life filled with activities and social events. It takes extra work, but it is worth it.
4. The broader hearing loss community is not as united as it could be. Much strife exists among the various segments of the hearing loss community, particularly as it relates to the proper treatment of children born with hearing loss. The arguing between groups is frustrating and counterproductive. A more united front would be beneficial in so many ways — greater feelings of inclusion, a stronger voice with lawmakers to support advocacy projects like captioning, and better access for all.
Readers, how can we help the hearing lost be found?
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I notice that even when I explain my issue and what I need, it’s hard for healthy hearing folks to keep up the accommodation ie: turning to me when speaking etc. So then it becomes an annoyance for both me and the other person to constantly remind and be reminded. I get it—it’s tiring to be mindful on a regular basis.
It is a challenge, but gentle reminders can help somewhat. Thanks for sharing your thoughts.
@Berger’s Blather: You are so right. Anyone will agree to accommodate your needs but I doubt anyone takes into consideration the long term behavioral changes that are required. If you are being treated for hearing loss you are into a life-long commitment. If your partner has normal hearing they are also along for the life-long ride. All those people at the party you are going to are glad to see you but have not been briefed on what you need if they want you to understand what they say. I went to such a party where the host, my friend, announced to the room that I was hearing impaired and what they needed to do to communicate successfully with me. It worked for 5 minutes then it was business as usual. It was not malicious. Just unusual and hard to stay “mindful” as you have so well said. Our need is to be patient but vocal. Letting it slide won’t do anybody any good.
My recent cochlear implant is like a flag waiving in the wind. It gets a little attention. I’m the first recipient most of my friends have ever seen. I’ve heard: “I didn’t know your hearing was that bad” – and I’ve been deaf as a stump for most of the 20 years I have worn HAs!
I was at a gathering of old friends this past week. The room was full and everyone was talking. I did quite well most of the time but at that point I was becoming tired so I drifted over to where an old friend was sitting and as I slid in next to him I said, “Bruce, I can’t understand a thing”. He looked at me and said, “Neither can I”. I was surprised and told him he needed to treat his hearing loss the sooner the better. I intend to keep at it for his sake.
Shari – as you have said: these people are all around us. Just as we need for others to be sensitive to our needs, we must be sensitive of those who are telling us by their behavior that they have unannounced hearing loss. Who better prepared for this kind of advocacy than we are who suffer serious hearing loss?
Great points! We are the most prepared to encourage others to come clean and get help.
When first wearing my Baha (I’m SSD) I would kind of tuck it under my very short hair so it would blend in. Who was I kidding? After a well meaning gentleman told my my hearing aid was falling off I decided it was time to come out of the hearing loss closet and start advocating. I’ve even been known now to wear a seasonal sticker on it just for fun. Now the unsuspecting folk who ask what that thing is on my head get a mini-lecture on hearing loss – probably more than they counted on. It has also opened up a whole new dialog with most people, many of whom admit to their own loss or need help for a “friend” or family member. I wholeheartedly agree – we who have been kind of suffering in “silence” now need to be the ones making the right kind of noise.
Good for you! Well done.
Good post! We need a more united front. The more of us who advocate and talk about hearing loss the better. If more of us asked for accommodations (personal and public) the more people would be educated. The more people educated, the better it will get and then! The more our needs will be met. Let’s make it a common every day practice to break out of our box! Afraid? So was I but with a little practice not so anymore.
Well said. Thanks Chelle.
Have any of you heard about sign language? Interpreters? Deaf culture? Use them as accommodations. Sometimes what we lost is gained in so many other ways. Nyle Dimarcos proved that. So many Deaf actors, lawyers, and teachers proved that. There are more professions by Deaf people that people need to know about. I did lost my hearing but I gain Deafness as my reward.
I am glad you have found something that works for you. We all need to find our way as it makes sense for each of us. This way may vary person to person and that is ok. For me, sign language doesn’t work as well since neither I or any of my family members know it.
While sign language is wonderful, it takes a long time to learn and be at ease enough to communicate with any speed. Also, most of us have nobody to sign with even if we did learn it.
Hi Sheri. I have nominated your blog for a Blogger Recognition Award! I nominated you because I can relate to so much of what you write about regarding hearing loss a; your blog posts are inspiring as well as being a truthful, informative account of life with hearing loss – keep doing what you are doing! You can see the nomination here; http://www.theinvisibledisabilityandme.co.uk/Blogger-Recognition-Award
Thank you so much for your kind words and the support!
Sure I know, Justin – and feel as you. I don’t avoid telling people I’m hoh and I will sign as I can with whoever. Doesn’t matter that my family doesn’t sign. There’s no “suffering” here. No health issue. I’m just me.
Great post, it is interesting to read people’s experience with hearing loss. I recently read that 7% of European employees have hearing impairment due to occupational noise and also 35 million Americans have some form of hearing loss – this is such a big amount of the population. It is important to try and prevent this before the hearing loss happens. While we work with people who work in noisy workplaces, there are many other ways hearing can be affected too, from every day life to medical reasons.
Great points. Thanks for your comment.
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