Educating others about hearing loss and deafness

Posted by johnny3 @johnny3, Wed, Oct 9 11:08am

I normally don’t discuss my hearing loss along other people behavior towards it to unfamiliar people such as this forum since this is new to me. Its just a thought on my mind. Recently I moved into this building where I live and I was getting acquainted with my next door neighbor. In our very first fully involved conversation we had, he inquired about my hearing loss and said ” How much loss do you have,” and I replied “About 70% in both ears.” He then followed with “Well, that’s pretty much Deaf isn’t it?” Onward I told him No since I don’t need sign language to communicate. I ignored it even though it bothered me a little, but I continue to be affable. We talked a little more and he then ended the conversation. From time to time I see him and there’s a distance. I’m ok with it. As I read more of the posts on this site and other sites, and I begin to wonder if you educate yourself immensely about the physiology and anatomy of the ears, you can turn a remark into a educational thought provoking conversation. This may in turn peak interests for hearing people to learn more about hearing loss as well as deafness. Just a thought.

@johnny3
Hi,
What you said is so relevant and true. Your neighbor’s response and distance is very common. He doesn’t know how to deal with you, how to speak with you, or worse, he can’t be bothered. Whenever I come across new people (as I did this past weekend at a noisy outdoor happy hour) the first thing I said was “Hi, I’m Jim’s mom..blah blah… and when they start to talk I immediately asked them to face me when speaking so I could understand them better.
This led to a BRIEF discussion on why I need this. I have done a lot of research and have asked a lot of questions over the years about the anatomy of the ear and how everything works. It helps tremendously to be able to present your case in an intelligent way. Most people are really curious and surprised and better…interested. Just don’t dwell on it. Truly interested people will ask questions. Of course, it depends on the people you are talking to. I was surrounded by younger , educated professionals.

You have to tailor your approach. I actually had a button hanging from a necklace that said Please Face Me I Can Understand You Better. So some people were bending down to read it. Then again, in other settings, I have to assess the people and maybe shorten my explanation. Yeah, I have seen eyes glaze over. There are those who can’t be bothered to deal with you.

So….how much you know and how you can explain it needs to be rehearsed. Someone usually knows someone else (generally an older family member) with hearing loss…..
Your chance to educate. I happen to think it’s an interesting but grossly misunderstood topic…..by hearing people AND those with hearing loss.

Not to make this too long but this weekend was one of the best I’ve had in dealing with a difficult environment. This bar was attached to a small theater where they show old movies…accommodates about 30 and there is a dinner package. One guy asked me if I go to the movies. I explained about captioned glasses at certain theaters and open captions. I said the glasses were heavy to wear and a theater this small would probably not provide them. He disappeared and came out with the manager who had a lighter weight pair of glasses and said they always have two available. Amazing. Another young guy builds and renovates building or areas for older people and said he is always looking for ways to improve living conditions. I told him about looped areas and TCoils in hearing aids. He had never heard about looped areas and was so excited. Also mentioned about acoustics, carpeting etc.

So..the best happy hour I ever went to because I knew what I was talking about and could answer their questions. Yup…learn as much as you can.
This is too long now lol.

FL Mary……smile and keep it brief but smart

Liked by Angie T

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Thanks for the reply. The unsettling thing about this conversation I had with the neighbor is that the setting was quiet and we were sitting next to each other. I heard every word he said including verbs,pronouns and adjectives. The duration was about 20 minutes.Then out of nowhere he ask about the severity of my loss, and some point he ended the conversation and walked away. I could be wrong, something tells me this person is not interested in the process of hearing, but I'm sure there are those that are. I'll keep on smiling, no doubt.

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Hi @johnny3, unfortunately, your story is not an isolated one, but it is unjustly isolating. You might be interested in also reading these related discussions on Connect:
– Communicating effectively with the hearing world. https://connect.mayoclinic.org/discussion/communicating-the-most-effective-with-the-hearing-world/
– Sharing the burden of hearing loss https://connect.mayoclinic.org/discussion/sharing-the-burden/
– Hearing loss: How do you identify yourself to others? https://connect.mayoclinic.org/discussion/how-do-you-identify-yourself-to-others/

Sounds like there wasn't much opportunity to educate your neighbor in that conversation that abruptly ended. Given that you're neighbors, what one thing would you like him to know?

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@johnny3

Thanks for the reply. The unsettling thing about this conversation I had with the neighbor is that the setting was quiet and we were sitting next to each other. I heard every word he said including verbs,pronouns and adjectives. The duration was about 20 minutes.Then out of nowhere he ask about the severity of my loss, and some point he ended the conversation and walked away. I could be wrong, something tells me this person is not interested in the process of hearing, but I'm sure there are those that are. I'll keep on smiling, no doubt.

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If you could understand the conversation! why did he ask about your amount of loss?

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@colleenyoung

Hi @johnny3, unfortunately, your story is not an isolated one, but it is unjustly isolating. You might be interested in also reading these related discussions on Connect:
– Communicating effectively with the hearing world. https://connect.mayoclinic.org/discussion/communicating-the-most-effective-with-the-hearing-world/
– Sharing the burden of hearing loss https://connect.mayoclinic.org/discussion/sharing-the-burden/
– Hearing loss: How do you identify yourself to others? https://connect.mayoclinic.org/discussion/how-do-you-identify-yourself-to-others/

Sounds like there wasn't much opportunity to educate your neighbor in that conversation that abruptly ended. Given that you're neighbors, what one thing would you like him to know?

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I want to Thank Him. I was upset by it at the time but eventually I started to question my hearing. This led to educating myself about the process of hearing as well the anatomy of the ears. Which then lead me to an on-line community that have what I have or similar. I had no idea the scope of it. Hopefully, my next step will be to meet people in person that are going through similar situations. It's been therapeutic.

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I feel that I may have responded to this before, but don't see it. Forgive me if I'm repeating myself. I do think that most everyone knows someone who is hard of hearing; a parent, a grandparent, a friend, etc. Sometimes their experience with that person is exasperating. Their experience tells them "I don't need this", and they walk away. I often refer to the 'empty chair problem'. That happens sometimes when we are in groups of familiar people, who are friends or family, but in an informal impromptu, short term setting. My example is in a group of good friends who are out for lunch together. They haven't seen one another for a while, and want to visit. You sit down, they sit down…everywhere but next to you until the last person standing has to take that empty chair. You hope it's someone whom you know well and enjoy talking to. Others like you and you like them, but they want to visit and their experience with you is that you don't do well in that environment. They struggle too. Then the person sitting next to you spends all the time talking to the person on the other side of her/him. You sit there like a statue because the person on the other side is doing the same thing. Anyone out there know what I'm talking about? 🙂

Liked by imallears

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@julieo4
Oh yeah….been in that scenario…..stuck in the middle ….until someone realizes and makes an attempt to include me. I don’t think I noticed if anyone deliberately chose not to sit next to me. This happens in a large group rather than with 2 or 3 people. Also happened several times with a deaf and hard of hearing group. I don’t sign (know some signs but don’t use) and everyone else does and uses both . But they were faced away from me in order to sign and speak at the same time. I actually avoid the lunch get together after a monthly club meeting because of this and because I don’t like the same restaurant they always attend. And I only brought up the topic to one or two people at that time. I don’t really know all of them that well.

I have learned ASL in the past but all my everyday friends are hearing so I never used it. If it’s a large group of family members I make sure I know what’s going on and try to use my Live Transcribe app. But there are rude and insensitive people in both worlds and I can choose when not to participate. Really depends on how I feel about advocating that day…usually have no problem with that . Then there are days that I don’t give a flip. You really need a tough exterior and a sense of humor at times but I have been HOH a long time and don’t feel sorry for myself at all.

Regards from FL Mary

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@imallears

@julieo4
Oh yeah….been in that scenario…..stuck in the middle ….until someone realizes and makes an attempt to include me. I don’t think I noticed if anyone deliberately chose not to sit next to me. This happens in a large group rather than with 2 or 3 people. Also happened several times with a deaf and hard of hearing group. I don’t sign (know some signs but don’t use) and everyone else does and uses both . But they were faced away from me in order to sign and speak at the same time. I actually avoid the lunch get together after a monthly club meeting because of this and because I don’t like the same restaurant they always attend. And I only brought up the topic to one or two people at that time. I don’t really know all of them that well.

I have learned ASL in the past but all my everyday friends are hearing so I never used it. If it’s a large group of family members I make sure I know what’s going on and try to use my Live Transcribe app. But there are rude and insensitive people in both worlds and I can choose when not to participate. Really depends on how I feel about advocating that day…usually have no problem with that . Then there are days that I don’t give a flip. You really need a tough exterior and a sense of humor at times but I have been HOH a long time and don’t feel sorry for myself at all.

Regards from FL Mary

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Mary, you and I have a lot in common. Mostly, in these situations I just wing it although frustrated because I cannot participate fluidly in the conversation w/o knowing what it's about. Makes me feel that people don't know how smart I am. (smile) They are my friends and comrades, so I keep going back. Glad I can shake it off and find some humor in it. Assistive technology (Mini Mic 2+) helps a lot, but it's still hard to follow conversation that is switching topics every 20 seconds. That's our reality in groups. ASL isn't a solution unless one decides to associate with others who use it. And, for speech readers it can be very distracting. I've been in many settings where signers are carrying on a conversation while a speaker is presenting. It's distracting and annoying. ASL is a beautiful means of communication, but is rarely a solution for hard of hearing people. Actually, I believe that talking about these things, as we do on this site, is an excellent stress buster.

Liked by imallears

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@julieo4

Mary, you and I have a lot in common. Mostly, in these situations I just wing it although frustrated because I cannot participate fluidly in the conversation w/o knowing what it's about. Makes me feel that people don't know how smart I am. (smile) They are my friends and comrades, so I keep going back. Glad I can shake it off and find some humor in it. Assistive technology (Mini Mic 2+) helps a lot, but it's still hard to follow conversation that is switching topics every 20 seconds. That's our reality in groups. ASL isn't a solution unless one decides to associate with others who use it. And, for speech readers it can be very distracting. I've been in many settings where signers are carrying on a conversation while a speaker is presenting. It's distracting and annoying. ASL is a beautiful means of communication, but is rarely a solution for hard of hearing people. Actually, I believe that talking about these things, as we do on this site, is an excellent stress buster.

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Hi,

My Audi has let me try a few assisted devices with my Phonak aids and none of them really helped as they picked up more environmental noise than anything. I have a pocket talker which was helpful years ago but but not so much now. I could have trialed the Roger products but the expense is ridiculous. May revisit that. I really rely on my phone app but it has its limits too. I find it useful and not so distracting …..you get really good at knowing when to look at the phone….I kind of hold it up a little so it’s a lot like captions which we are all experts at . Speed readers I call us lol. Thank goodness for Innocaption and the Captel phone. I retube my own aids and make sure they are in pristine condition and visit my ENT every several months for a cleaning’ and a dustin’ and try to avoid anything ototoxic. Right now I have to take eye drops 4 times a day for 6 weeks for an eye inflammation . I know the prednisone and NASID drops are affecting the quality of my hearing but it’s something that is temporarily necessary. Oh well…off to the noisey gym in a bit….I go into directional mode on the aids which blocks most of the noise around me…fantastic setting….that and the mute mode😏

FL Mary

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Group conversations are a real hard one. They are not usually held in a quiet setting AND multiple people talk at once. Easy to get overwhelmed and loose track of the conversation. It so easy to avoid those situations, but that leaves me out completely out. I have just begun using Ava on my phone and trying to get used to that while at the same time trying to get others to use it too. Not easy but can work well.

Mary, I also use the "mute" button. Trying to listen to things we can't understand is so frustrating, stressful, and tiring that I sometimes just quit. I think it actually lowers my blood pressure and I know it helps me relax. I think my hearing aids make some circuitry noise that I don't notice when I put them on, but I sure do notice when I turn them off. Also when I'm alone (driving or at home etc) I'll turn off my hearing aids because the noise I hear is so distracting. My ability to hear noise is great – heading speech is awful. Audiologists tell me I have a "tough" hearing loss. That's not a real technical term, but I think I understand it.

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@arrowshooter

Hi,
I hear pretty much all sounds also but they are not and shouldn’t be distracting. There are noise suppression programs and hearing aids like my Phonaks that are automatically supposed to self adjust. My favorite is the manual directional program which really diminishes the sounds around me and is great in a noisy restuarant or shopping mall. I turn my aids down, not off, when driving.

You shouldn’t be uncomfortable with everyday environmental noise and I remember when I first got up my upgraded Phonaks how I hearing too many unnecessary sounds. My Audi adjusted that.

My loss is profound and I have been told by many hearing aid professionals that they are surprised I do so well….also that my loss is a “difficult” one. I told my Audi that speech discrimination is my primary goal but so is listening comfort. Give me both without sacrificing either one…and she was able to get that balance.

A quiet brain leads to a longer healthier life . Go back to your Audi and demand an adjustment. I left a hearing aid specialist once because she threw in the towel and said she couldn’t help me anymore. All that noise is not doing anything positive for your overall health. Get a new Audi if necessary.

FL Mary

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@imallears

@arrowshooter

Hi,
I hear pretty much all sounds also but they are not and shouldn’t be distracting. There are noise suppression programs and hearing aids like my Phonaks that are automatically supposed to self adjust. My favorite is the manual directional program which really diminishes the sounds around me and is great in a noisy restuarant or shopping mall. I turn my aids down, not off, when driving.

You shouldn’t be uncomfortable with everyday environmental noise and I remember when I first got up my upgraded Phonaks how I hearing too many unnecessary sounds. My Audi adjusted that.

My loss is profound and I have been told by many hearing aid professionals that they are surprised I do so well….also that my loss is a “difficult” one. I told my Audi that speech discrimination is my primary goal but so is listening comfort. Give me both without sacrificing either one…and she was able to get that balance.

A quiet brain leads to a longer healthier life . Go back to your Audi and demand an adjustment. I left a hearing aid specialist once because she threw in the towel and said she couldn’t help me anymore. All that noise is not doing anything positive for your overall health. Get a new Audi if necessary.

FL Mary

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Thanks Mary, I've pretty much tried most of what you suggest without success. My loss is severe above 1K hz and profound above 2K hz. I recently went from Starkey to ReSound (2 pair) to Oticon (2 pair) and the biggest difference I can detect is that the ReSound were the worst. And, yes, there were many adjustments along the way by several VA audis and one private practice audi. I don't think I have to tell you how frustrating it is to hear but not understand. The different noise suppression programs just produced different sounding noise to me. The Oticon produce the best sound for me and allow me to hear some birds and crickets etc, but they do little to improve my speech understanding. I can enjoy music (instrumental) through HL and streamers, and when using an induction loop or streaming device I do very well with lectures and TV. (I generally use t-coil only program)

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@johnny3

Thanks for the reply. The unsettling thing about this conversation I had with the neighbor is that the setting was quiet and we were sitting next to each other. I heard every word he said including verbs,pronouns and adjectives. The duration was about 20 minutes.Then out of nowhere he ask about the severity of my loss, and some point he ended the conversation and walked away. I could be wrong, something tells me this person is not interested in the process of hearing, but I'm sure there are those that are. I'll keep on smiling, no doubt.

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I am learning how to speak up for myself. I have learned to tell people to keep their usual speaking volume. One time a nurse came into a quiet empty waiting room and loudly said she was going to take my blood pressure. Another time a technician at Mayo gave me an IQ test in a volume that was clearly stressing her voice. I wish I had explained to her that mine is sensorineural loss, which is not improved with volume increase but is improved with quiet background, slowing speech down, and allowing me to see her face clearly. It is getting easier for me to ask people to slow down. I still have trouble when people get agitated after I ask for a repetition of what they said. Some people react as if I wasn’t listening. I’m learning, and will be glad to read any tips you might have.

Liked by imallears

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@mpeters

I am learning how to speak up for myself. I have learned to tell people to keep their usual speaking volume. One time a nurse came into a quiet empty waiting room and loudly said she was going to take my blood pressure. Another time a technician at Mayo gave me an IQ test in a volume that was clearly stressing her voice. I wish I had explained to her that mine is sensorineural loss, which is not improved with volume increase but is improved with quiet background, slowing speech down, and allowing me to see her face clearly. It is getting easier for me to ask people to slow down. I still have trouble when people get agitated after I ask for a repetition of what they said. Some people react as if I wasn’t listening. I’m learning, and will be glad to read any tips you might have.

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@mpeters
Good for you and the more you do it, the easier it will become. May I suggest that you repeat back to the person what is was you DID hear instead of asking them for a complete repeat. For example…you’re in a doctors office and she says “ please turn to the left” You didn’t hear the word “ left” So you say …”which way do I turn “ or something like that. Some people do get agitated and annoyed….too bad.
And don’t ever let anyone tell you “Never mind” Insist on a repeat. That’s just so rude and dismissive. Assertiveness with a smile.

FL Mary

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I have bad hearing in both ears,with epilepsy it affects the hearing so I can empathize with you especially with Temporal Lobe Epilepsy

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