people thinking i'm faking deafness...

manya-hoh

New Member
hey :)

i'm completely deaf in one ear, +100db in the other. however, i only started losing hearing around 10-15 years ago (43yo now), so i was born and raised hearing & oral. i have no problem continuing being oral, at least for the time being, when i have to. but the issue is that hearing people perceive it as a mixed signal somehow. it seems like it would be easier for them if i were completely deaf (or completely hearing).

i carry around a notepad, for them to write on whatever they want/need to say to me. i mean, with friends i just chat on phone, but strangers ferociously refuse to use phones. they are freaked out by speech-to-text deaf apps, fearing that their words are being recorded somehow, they literally run away lol. and they won't type on memo pad either, i'm not sure why. but handwriting on paper they are more or less willing to do. grudgingly, but yeah.

however, i am able to guess some of what they are saying. idk, "hi," "bye," "have a nice day," "take a seat, a nurse will call you," "your total is $xxx" - i can guess these things, because they are predictable. i'm not very good at lip reading, and i don't hear enough sounds to actually carry out a conversation, but between non-verbal cues, and muffled sounds, and general context of the conversation - yeah, sometimes i'm able to guess what the person is saying. and other times i can't. so sometimes i answer them, and other times i tell them i can't hear and ask them to use my notepad.

and it's this inconsistency that angers them. they seem to think i'm faking deafness for attention or something.

example 1:
went to a doctors office today. walked up to the receptionist, said "hi, im hearing impaired, my name is manya-hoh, here's my id, i have an appointment today at 10am with dr so-and-so." if the receptionist said the usual "take a seat, the nurse will call you" - i woulda guessed it, thanked her, and the conversation would be over. but she said something i couldn't decipher. she was wearing a mask too. i told her i can't hear, handed her my notepad, she pushed it away and repeated one word a couple of times. based on her jaw movement (under the mask) it seemed like she was saying "actor?", and for the life of me i couldn't guess what could this mean in the context of a doctors appointment. i smiled, shook my head, said i couldn't hear her, offered my notepad again. after a few repeats she finally used it, and it turned out she needed my address. but she also unloaded a whole tirade on me, about how we've had a whole conversation no problem, and now all of a sudden i can't hear, pahleeease, with eye-rolls and "ugh" and all that. i mean, we did not have a conversation. i was the only one talking. the first time she said something - i asked her to use my notepad. should i have given her my notepad before saying anything? i mean, 90% of the time there's no need to, they just tell me to take a seat, there's nothing to say, that's why i didn't pull it out in the very beginning.

example 2:
same doctors office. at first i was talking with a new doctor that i never met before. she spoke at high frequencies, i didn't hear any sounds at all from her, and she wore a mask. so i told her i couldn't hear her, and had her write in my notepad. and then another doctor joined in. this one i interacted with before, was familiar with his speech patterns, and he speaks at low frequencies, and he took off his mask for me. so i was able to guess what he was saying. and that sent the first doc into a full-blown tantrum, throwing my notepad at me (literally threw it, hit my chest). the second doc told her i was reading his lips, and couldn't read hers cuz she was wearing a mask - that calmed her down a little, but she was still fuming and throwing things around.

example 3:
my case manager keeps trying to "catch" me at hearing, and shaking her finger at me with a mischievous smile whenever she "succeeds" at it. i mean, she has my medical records on file, she knows i'm hearing impaired, but somehow doesn't believe it i guess? for example, she'd say "hi," i'd respond, and she'd laugh and shake her finger, saying that see, you can hear no problem. i didn't hear her say "hi," i saw her say "hi," it's not the same. if she says "hi" facing away from me - i won't know it and won't be able to respond. but these nuances go over her head i guess.

honestly, for me it would be easiest if people just typed up whatever they have to say, on a tablet. but they insist on talking, and when it's short predictable interactions - i cave in, and try to accommodate, and it just always results in the above type of conflicts.

what am i doing wrong? should i just flat out refuse to "hear" whatever they are saying? but it's hard for me to pretend to not understand something that i do understand, like "have a nice day." hard for me to shrug my shoulders and give them my notepad, instead of responding "thanks, you too."

how do you guys do it? i figure people who are completely deaf are also able to guess basics like "have a nice day" or "take a seat" or such. do hearing people get angry at you too, for understanding some of what they say but not all of it?

thanks!

ps: for clarity, i never use the word "deaf" to describe myself, i say "hearing impaired." i'm not pretending to be something i'm not, i'm not exaggerating my hearing loss, i just really cannot hear what people are saying...
 

Old Analog

Active Member
Yah I didn't want to misapprpriate deaf so for years I used hard of hearing, my deaf friends told me no I was late deaf, and I quit being oral because then people think you can hear, there's a difference between hearing and understanding, been there done that :2c:
 

deerheart12

Member
Hi

Thank you for sharing your story. I am hard of hearing myself and have to navigate this new world of masks. Like you said I usually rely on routine and do the best I can. I do have hearing aids and I'm able to pick up some things. However with some people it is just impossible I often nod as though I understand (not a great idea in some situations I know! ) I also use a speech to text app that sometimes help but not always. I'm surprised how people seems to shy away from it according to your situation. It is possible it is this current political tension that no one wants to be recorded and stress could cause people frustrations/stress to boil over so it is possible why you got a lot of back lash. It does not mean it is your fault. We all have to learn new way of communication.

Now for those people who think you're lying and such who knows?! They probably do see people who pretend and stuff and just don't realize how much lip reading or how much cues we depend on that makes us seem to communicate like hearing people.

Does your doctor have sign language interpreters available? Maybe you can have someone help you repeat what they say or how to solve this miscommunication problem Or you can write a letter/ message to your doctor's place (humane resources/ customers services) explaining this treatment that you're getting and how can a deaf/hard of hearing person get help on communication clearly?

That seems really rude that people aren't helping you out ugh. I would be really frustrated yes. Maybe saying that you are deaf and that you communicate by lip reading so please use a paper or pen or using your phone text to speech app.

There seems to a a lot of issues dealing with masks among the deaf/hoh and how people are getting confuse or feeling scared about removing their mask to communicate. It's a huge challenge that's for sure!

Hope that helps !
Annie
 

manya-hoh

New Member
thanks for the replies!

I quit being oral because then people think you can hear
right, this seems to be the issue, unfortunately. strange imho, cuz obviously some people (like myself) lose hearing after they learn how to talk. not like you forget how to talk the moment you lose hearing. i do have an accent by now, but im still able to talk clearly enough for people to understand me, most of the time.

I also use a speech to text app that sometimes help but not always. I'm surprised how people seems to shy away from it according to your situation.
im surprised the people you interact with agree to use your app. nobody ever agreed to use mine. when they see a phone - they literally jump back and put their hands between us. i mean, there's nothing unusual about my phone, yet they react to it as if it were a bomb lol.

Does your doctor have sign language interpreters available? Maybe you can have someone help you repeat what they say or how to solve this miscommunication problem Or you can write a letter/ message to your doctor's place (humane resources/ customers services) explaining this treatment that you're getting and how can a deaf/hard of hearing person get help on communication clearly?
it's not my regular doctor. i'm having some surgeries, so these are surgeons/anesthesiologists/radiologists/etc at a large hospital, people i never saw before and hopefully will never see again. im not complaining of mean hospital staff, we'll figure it out with them one way or another. i was just illustrating the issue, because it's the same scenario with every stranger i bump into, when they discover that i can talk but can't hear.

i thought maybe i'm doing something wrong, because i'm still new to the issue, i dont know anyone who is deaf. i thought maybe this issue has an easy solution. just like people's refusal to use phone apps has a solution - physical paper notepad. but it seems like it really boils down to people believing that if i can talk - it must mean i can hear as well. to me it's bizarre logic, kind of like - if i can see a blind person, it must mean that the blind person can see me too lol. but yeah, seems like this is what people are thinking, about my hearing. oh well...
 

deerheart12

Member
im surprised the people you interact with agree to use your app. nobody ever agreed to use mine. when they see a phone - they literally jump back and put their hands between us. i mean, there's nothing unusual about my phone, yet they react to it as if it were a bomb lol.

How are you doing it? Are you handing your phone to the person so they can speak to it? It's possible nurses and staff don't want to touch anything from a patient due to potential covid 19. I don't ask them permission or try to get them to hold my phone. I have the google live transcribe app open on and I hold it in my hand and after they speak I take a quick glance and response. I hold it open /flat so they can see it too. I'll leave it on a small table while I'm sitting in my chair for my regular infusion treatments and it'll pick up pretty well only if the person speaks clearly. I had one nurse who spoke too softly and didn't really talk much but the routine was the same nothing crazy. I always have paper and pen with me if it doesn't work. Or I'll gesture too.

When I had to stay in the hospital 6 years ago, I had to ask every doctor, nurse, to write down what they were saying since the mediation mess up my concentration and hearing and my hearing aids was not working as well so it was a challenge but writing was the best way to communicate with me at the time.

i thought maybe i'm doing something wrong, because i'm still new to the issue, i dont know anyone who is deaf. i thought maybe this issue has an easy solution. just like people's refusal to use phone apps has a solution - physical paper notepad. but it seems like it really boils down to people believing that if i can talk - it must mean i can hear as well. to me it's bizarre logic, kind of like - if i can see a blind person, it must mean that the blind person can see me too lol. but yeah, seems like this is what people are thinking, about my hearing. oh well...

that is true! I notice with some people who have no idea or never met with deaf/hard of hearing people tend to think we can hear or some strange thing. It is possible that the staff at your hospital do not have the training on how to deal with deaf/hoh people. I live near a deaf community so that is possible. You could try out saying that you are deaf and please speak louder/i read lips/ please write/type or do some gestures or sign language more often you might be surprise how this might get people to oh I need to be more clear with you and stuff. But yes as always there will be people who have no clue on how to act, freeze, freak out, stare, or run away for fear of making a mistake. And of course the dang covid 19.
 

Jane B.

Well-Known Member
You might refer to yourself as late deafened. And explain thus you can talk but some pitches and/or accents on in the range you have lost.

Manya-hoh
The amount of hearing I have currently is similar to yours but when I lost what is very different. I lost all hearing in my left ear at the age of 5 following an infection that followed measles. (I am 77 so that means that it was in 1947 or 48 depending on when in the year it was) My right ear was very good fairly well into adulthood but is currently to the point of being profound. So I grew up oral
= regular school & community college.

I have not had problems using Live Transcribe for a one on one conversation. I have a corded mic connected to my phone and hold that close to them without asking them to hold anything. It also really helps with a sound system in places like a church or the speaker on a computer or TV. It does not do well in a in person group because there is no way of knowing who is going to speak next to get the mic up to them.
 

manya-hoh

New Member
guys, thank you so much for the Live Transcribe tip, i was using another app, just installed Live Transcribe and i like it better. i hope hearing people will like it better too, fingers crossed :D

How are you doing it? Are you handing your phone to the person so they can speak to it? It's possible nurses and staff don't want to touch anything from a patient due to potential covid 19. I don't ask them permission or try to get them to hold my phone. I have the google live transcribe app open on and I hold it in my hand and after they speak I take a quick glance and response. I hold it open /flat so they can see it too. I'll leave it on a small table while I'm sitting in my chair for my regular infusion treatments and it'll pick up pretty well only if the person speaks clearly.
it was happening before covid19 too, but i think i might need a better phone. i can't just place my phone on a table and expect it to pick up speech. i gotta hold it for the person to speak into it, about 1-3ft from their mouth, depending on their volume and the amount of background noise. i don't give them my phone to hold, and i don't exactly ask for permission, i just tell them i'm hearing impaired (sign it), cannot hear them, but my phone can transcribe their speech for me, and hold the phone horizontally (screen up) between us, at chest level. and they jump back, put their hands between us, shake their head, and refuse to speak another word until i put the phone away. not just turn it off, but put it away in my purse. then i offer them my paper notepad, and after some convincing they might agree to use it. or might not, just depends.

Manya-hoh
The amount of hearing I have currently is similar to yours but when I lost what is very different. I lost all hearing in my left ear at the age of 5 following an infection that followed measles. (I am 77 so that means that it was in 1947 or 48 depending on when in the year it was) My right ear was very good fairly well into adulthood but is currently to the point of being profound. So I grew up oral
= regular school & community college.
actually seems somewhat similar :) i had an injury that resulted in middle ear infection when i was 3yo, that caused some loss in my right ear, but left was good, and right wasn't gone completely, not till i was in my late twenties. that's when the left started deteriorating too. my mom lost her hearing early too though, we both got otosclerosis, bones in middle ear fusing together. so there might be a genetic component to it, idk. but yeah, regular school/college/work as well.

I have not had problems using Live Transcribe for a one on one conversation. I have a corded mic connected to my phone and hold that close to them without asking them to hold anything. It also really helps with a sound system in places like a church or the speaker on a computer or TV. It does not do well in a in person group because there is no way of knowing who is going to speak next to get the mic up to them.
im not sure if holding a mic would work better than holding a phone. i guess it's worth trying, but it seems like they are scared of getting recorded. maybe it's really the app, maybe they don't like the look of my old one and will do better with Live Transcribe. i don't do group activities much, watch tv on mute with captions, and use instant messaging with people i know (whether in person or not). its mostly short first-and-only-time interactions with strangers that result in issues. it doesn't really matter to me what they think at the end of the day, i just hate angering/stressing them needlessly, and i want them to communicate whatever they gotta communicate to me, rather than run off in a fury or shoo me away.

i'll see if they like Live Transcribe better than my old app, thanks again for the tip, and i'll also count these interactions, to get a more accurate picture. because i feel like its "always" a problem - but i remember a few times when things went smoothly. im going to take notes for a month or so, to see which interactions were smooth and which weren't, if there are any patterns, and also - if my perception is indeed accurate, that majority of interactions go wrong. maybe im just not paying attention to the good ones, taking them for granted.

thank you for your support!
 

Jane B.

Well-Known Member
What I find helpful about the corded mic is it can be held closer to the sound source (someone talking in person, computer speaker, TV speaker, etc.) and still get the screen of the phone in a position that is easy for me to read. I wear trifocal glasses so where the phone screen is makes more difference to me than to some people.
 

manya-hoh

New Member
i've been taking notes for nearly two months. first of all - hearing people do like LiveTranscribe better, i see a lot less of jumping away now that i switched to it, thank you guys for recommending it. and second - i've discovered that people split into roughly three equal groups, about 30-35% each. one group accommodates without issues. another - outright refuses to accommodate, won't be convinced to, just ends the conversation and walks away. and the third group, about 30%, is the one that puzzled me, the people who have their own ideas on what hearing impairment means and what accommodations i need and don't need therefore. and yes, it does boil down to the fact that i'm oral, that's what throws them off.

example:
had an argument with one such person the other day. she wouldn't tolerate me using my phone, so i had her write in my notepad. she kept trying to talk instead, i kept redirecting her to the notepad. finally she wrote on it "but you can talk" i responded "yes, i can talk, but i cannot hear." she ignored the second part and wrote "then nothing prevents you from answering my question, you don't need me to write it down," with a triumphant look on her face.

my takeaway is that these people are just dense. that can't be helped. i'm not doing anything wrong. this is just something to live with.
 
Good morning and thank you for sharing.

I work in the mental health care field and am studying to become a Deaf Advocate. I have had a client much like you; late onset deafness. They could speak and I wrote everything back. I would take them to their doctors appointments and ensure their rights were being observed. Either the doctor wrote the responses or I did. It bothers me a little more that your case worker is "trying to catch you hearing." Sounds like you need one with more compassion and professionalism, imho.

Telling them "I have late onset deafness" or I went deaf 10 years ago, making this at least a little easier for us...levity sometimes helps. It would quickly explain an move on from it. (I hope)

I am sorry this is an issue for you and others at all. Take care and good luck with your surgery.
 

deerheart12

Member
i've been taking notes for nearly two months. first of all - hearing people do like LiveTranscribe better, i see a lot less of jumping away now that i switched to it, thank you guys for recommending it. and second - i've discovered that people split into roughly three equal groups, about 30-35% each. one group accommodates without issues. another - outright refuses to accommodate, won't be convinced to, just ends the conversation and walks away. and the third group, about 30%, is the one that puzzled me, the people who have their own ideas on what hearing impairment means and what accommodations i need and don't need therefore. and yes, it does boil down to the fact that i'm oral, that's what throws them off.

example:
had an argument with one such person the other day. she wouldn't tolerate me using my phone, so i had her write in my notepad. she kept trying to talk instead, i kept redirecting her to the notepad. finally she wrote on it "but you can talk" i responded "yes, i can talk, but i cannot hear." she ignored the second part and wrote "then nothing prevents you from answering my question, you don't need me to write it down," with a triumphant look on her face.

my takeaway is that these people are just dense. that can't be helped. i'm not doing anything wrong. this is just something to live with.
Thanks for the follow up! Glad you're getting something out of that app. I seem to do okay when there is a good wifi connection but once there is no wifi then it's all paper and pen or gestures!

Sometimes I feel like I need to go get an interpreter FOR the hearing person as they are in capable of speaking or communicating to me lol. I noticed many hard of hearing get frustrated with that issue of "but you can talk" issue so they just turn off their voice and use sign language /paper and pen as that really forces these people to communicate. :dunno:

Best wishes to you :)
 

sonocativo

Well-Known Member
Ive has a few wearing masks I cant communicate with ( I am full deaf and have implants ) so if they dont sign/write or remove the mask I just stand there looking at them with no reply ( Im also oral ) eventually they get the hint. Now if a Doc ever threw anything at me Id have their ass handed to them, get the name, office and report it to authorities including any witnesses , if you get a lawyer they will have a field day, that is un professional !
 

Jane B.

Well-Known Member
A few ideas and a pleasant story; so this thread isn't ALL complaints!

How might they react to "I learned to talk before I lost my hearing"?

Another of the things I like about having a corded mic plugged into my phone is that by holding just the mic close to them keeps me from covering the mic in my phone with my hand as I hold my phone.

One of you mentioned needing WIFI for a good connection. Don't forget that you need data when not using WIFI. It is a matter of having data setup with your service provider and not having run out of however much your allotment is.

A few days ago I had some glitches in a delivery order from Domino's and I didn't happen to have my hearing aid in yet when the young man that delivered it got to my home. It turned out that we did have to talk about it and the young man that delivered it pulled out his phone when I could not get enough reading his lips. I am not sure what app he used but he wrote to me on his own! I told him about noticing once again how fast the younger generations are on the thumb keyboard on a phone then us older ones are but we are faster on a full size keyboard doing touch typing with all fingers.
 
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