You’re Not Really…Deaf, Are You?

You’re not really deaf– are you?

I stared at my teammate.  We had played volleyball together for many years and she had interpreted for me and another deaf teammate during our huddles.  This was the first time she had ever asked me questions about being deaf.

Yes, I said, nodding my head. 

“But you’re not as deaf as David, right?”

“Actually, our audiograms show that he has better hearing than me,” I explained.  She looked at me with a puzzled look.

“But you have such good speech!” 

So I explained more.  How I couldn’t use the phone nor understand anything on the radio.  I explained my speech discrimination scores– the scores that show how well someone can understand speech by auditory means alone.  I score a zero in my left ear and a six percent in my right ear, a score obtained by a lucky guess.   The squiggly lines on the audiogram start at 90 and hover around 110 decibels.  This is the level that I begin to detect sound without my hearing aids.  The hearing aids help me to hear when someone starts speaking but without lipreading, captioning or sign language, the information coming in auditorily makes no sense.

She paused and looked at me in silence.  “You have some great lipreading skills,” she said.  I could see that she was digesting all this information in a new light.

This isn’t the first time that this has happened–it is something that happens frequently.  That’s why hearing loss is often referred to as the “invisible disability.”   Often people are unaware at the incredible amount of work it takes to gather information and understand communication that goes on around us on a daily basis.   And others are often unaware of how much just slides by, because it’s physically impossible to get 100% access to all that goes on around us when the sense of hearing isn’t all there.

At a social gathering in Chicago, I chatted with fellow writers, most who knew me as Deaf Mom but were meeting me for the first time.  I think few realized that I was lipreading entire conversations and there were chunks of the evening that I missed.  For example, when the hosts got up in front and started talking, there really was no polite way to interrupt the middle of their speech and say, “Hey, can you say that again, I missed what you said?”  So that kind of stuff slides right by.  And to the casual onlooker, it probably seems like I’m getting access to the communication– there’s nothing to indicate that it’s sliding right over my head.

At a friend’s wedding, I was meeting an older woman for the first time and I missed something that she said.  “Oh the music is so loud!” she said, and then proceeded to explain again what she said.  I still didn’t understand what she said and I explained that I was deaf.  She cocked her head to the side a bit, looked at me and said…

“Oh!  But you seem so normal!”

26 replies
  1. Bill
    Bill says:

    One of my friends that a met at the gym – I didn’t realize he was deaf for a long time. Not until after I had started on DeafRead, and been learning about deafness, did I realize it.

    I live a town with a long history of oral deaf ed….

    To flip it, I was at a workshop a few weeks ago, and the interpreter was not keeping up, so I couldn’t follow what the deaf speaker was signing….

    Reply
  2. Kim
    Kim says:

    Yeah– I hate that, “but you have such good speech” comment– as if I’ve accomplished the impossible. I have a born Deaf friend who doesn’t have good speech. Her audiogram shows she have better hearing than mine, though our patterns our similar. When we first met, my hearing was slightly better. Over the years mine has progressed, so it’s worse now. Her’s has renaimed relatively constant since birth. My audiologist once said if I had grown up with the hearing I have, I would have had a hard time learning to speak. Gosh– ‘NORMAL?!” What does she expect Deaf people to look like? hahaha!

    Kims last blog post..Proposition Eight

    Reply
  3. Nita
    Nita says:

    You described well in your post how we deafies differ, Karen! I couldn’t do it better 🙂 I could use your post as an example to explain to hearies that I come across, if you don’t mind.

    The most common question I get asked is: “Can you drive”?

    And another good explanation how hearing aids work: They magnify, NOT clarify the sounds! Hearies seem to get this when the most usual assumption that hearing aids work a miracle.

    Reply
  4. Karen Putz
    Karen Putz says:

    @Bill If you’re ever in a situation where the interpreter isn’t keeping up, please do try and let the deaf person know in some way as they cannot monitor the quality of an interpreter’s voicing ability. 🙂

    @Joanna I hope that gives you a little more insight about me. 🙂

    @Tisha & Kim: My new tag line: “Me? Normal? Why thank you!”

    @Nita You’re welcomed to use this post in any way.

    Reply
  5. Stephen Hopson
    Stephen Hopson says:

    Hey Karen, I’m just getting back into the groove after a week overseas and a speaking engagement the week before that. I’m visiting some of my favorite bloggers again.

    This article brought a smile to my face and a nod of recognition for I have experienced the same exact things. People say stuff like that all the time. And you couldn’t be more right when you say people, when observing us in a social or meeting situation, think we’re absorbing it all because there’s nothing to indicate we aren’t getting it.

    Good stuff here – it’s helping everyone who reads this understand a little more about what it’s like to be deaf. Nice job.

    Reply
  6. Bill
    Bill says:

    Ya know, us SHs (stupid hearies) could use a better information guide.

    Even a blind guy said to me today, “deaf people can drive”, like I am a stupid hearie (or see-ie?). (Well, I am, but I DO know deaf people drive, have sex, …).

    To be fair, he is one who’s had people at our theatre hand him a reflector for Mopix – while he’s carrying his white cane!

    There are tons of stupid hearie questions that could be answered – I have a friend who’s wiling to answer my questions without seeming to condescending.

    We need a safe place to ask questions like ‘Do deaf people have any equivalent to “ear worms” – the songs that get stuck in your head, and play over and over?’

    @Nita, or whoever – the hearing aid thing does confuse me. If you can explain why it helps…?

    Reply
  7. Jim
    Jim says:

    As hard of hearing, I get that question all the time. “Are you as deaf as this person or you can hear better than that person?” I am stuck in the middle. Both Deaf and Hearing people often do not know that I have a hearing loss unless they know who I really am. Its a struggle in this world for me as a hearing-impaired individual who is trying to live my life in both deaf and hearing worlds. There’s nothing wrong to live in a Deaf culture and there’s nothing wrong to live in a Hearing culture life so I don’t have to choose one but rather “both”. People with disabilities make up one of the largest minority group in the country because many of our disabilities are invisible. We are often stuck between the popular assumptions what we face and the actual experiences of we face.

    Jims last blog post..Pictures of my 2 dogs and cats

    Reply
  8. debcny
    debcny says:

    Great post! I am another SH (Stupid Hearie lol) – except, I think having a son with mild-moderate hearing loss has certainly made me much more aware of stupid commetns like the “I thoght you were normal” one (oy!).

    I find that people either always think the worst (like he can’t do anything because he wears HA’s) – or they question wether his hearing loss even “counts” as a hearing loss since he’s mainstreamed, etc.

    Sometimes i’s frustrating. The better he does in school, or at whatever, the more people think he doesn’t really need his HA’s or the FM… instead of realizing how hard he works, and how those things are helping him do as well as he is.

    debcny

    debcnys last blog post..Mild Hearing Loss or ADD??

    Reply
  9. Jenny B
    Jenny B says:

    Hi,
    Great post and you do explain it so well. I’m also caught between the two worlds as my rather poor hearing degenerates over time. Hearing aids help raise volume, but they do not restore lost hearing or sounds. I’ve spent most of my time in the hearing world and I know that I do need to move in the direction of signing because I truly do miss alot of what is spoken even though I wear hearing aids.

    Reply
  10. DeafMom
    DeafMom says:

    @Jim I often tell people that there’s one world and I’m a part of all of it.

    @Debcnys Yes, I can totally identify with what you said. When people talk with me and I handle the conversation well, they simply think I can do that in all situations.

    @Jenny My whole world opened up even more when I learned ASL. Happy learning!

    Reply
  11. aaron
    aaron says:

    okay, big admission here. I am severely HoH and even I have made variations of the “normal” comment. And even I have said “nevermind”. I hate these comments as much as anybody, but we have to try not to be too sensitive because these things have implied meanings.

    example:

    they SAY “oh I thought you were normal”
    they MEAN “oh I thought you could hear like the average (normal) person”

    technically speaking, we deafies will never be “normal” until we rank above 50% of the population.

    and as annoying as “nevermind” is, someone pointed out in another blog how hearing people sometimes talk incessantly about a whole lot of nothing, saying things they realize are stupid, and for this reason do not wish to repeat.

    Reply
  12. ZenMonkey
    ZenMonkey says:

    In my experience working and playing with deaf people, and handling my own health problems, I think I’ve found that invisible disabilities bring out the goofiest questions from people. I guess it’s the ones who can’t handle that disconnect that occurs between “person looking ‘normal'” (whatever that is) and “person is disabled.” It’s the moment where, if there’s any discomfort, it all comes out — sometimes in the form of ridiculous comments or questions — whereas with a visible disability, people are better able to prepare themselves, if it’s necessary.

    The funny part of this is I’ve been telling my deaf students for a while now that I’m disabled due to chronic illness, but the day I first came to class using a cane everyone asked “What happened to your leg??”

    Reply
  13. RhodesTer
    RhodesTer says:

    I think you know I work hotel security. The other night a few guests complained about a banging noise in the vicinity of a particular room, and when I showed up to investigate I encountered a young woman in the hallway.

    She asked if I was security. She asked if there was anything I could do about the noise. Yes on both counts, but I realized a minute or so in that she was lip reading me. “Excuse me for asking, but it’s just entirely out of curiosity.. are you hearing impaired?”

    She explained that she was, yet the noise was bothering her. At the same time, she could hear my voice but couldn’t understand what I was saying without lip reading. Turned out someone else had called, because she doesn’t use a phone either.

    Different levels of impairment, I guess.

    The noise was from the hotel engineer working on a pipe. I radioed him to knock it off because even the deaf guests were complaining.

    Okay, I didn’t really say that.

    RhodesTers last blog post..“I’ve got him at gunpoint”

    Reply
  14. Julie
    Julie says:

    Great post! You nailed it when you said, “Often people are unaware at the incredible amount of work it takes to gather information and understand communication that goes on around us on a daily basis. And others are often unaware of how much just slides by…”

    My heart breaks sometimes for my deaf-in-one-ear / HoH in the other son… he is working SO HARD to “get” what is going on, and very few folks realize the effort he puts out.

    Thanks for articulating it so well,

    Julie

    Julies last blog post..In which it is Winds-day… a Blustery Day

    Reply
  15. Clare
    Clare says:

    I get the same questions all the time.
    I have progressive hearing loss (which is now ~95 dB across the board) and I speak well. People often comment that I can’t “really” be d/Deaf because I talk. That one pisses me off. But I’ve known ASL since I was 5, I can’t hear without my BTEs, and I rely on captioning. To me, that qualifies me a deaf. That and the profound hearing loss.

    There is some humor in people’s questions.
    Once I was explaining to a stranger that I was deaf so they would need to speak louder. The person looked at me and said, “Well, you don’t LOOK deaf!”

    I had to harness every ounce of my self-control not to reply with, “Well you don’t look stupid.”

    Clares last blog post..Fill in the blanks

    Reply
  16. Daisy
    Daisy says:

    “…the incredible amount of work it takes to gather information and understand communication that goes on around us on a daily basis.” I’d also add how tired I can be after a day of teaching. When kids mumble or look at their feet instead of facing me, when teachers try to whisper to me (whispers are worthless to me), and more. It’s a lot of work to communicate in my job.

    Reply
  17. L. J. Miles
    L. J. Miles says:

    Boy this post really is something I experience on the regular. I even have certain people ” test” my hearing by trying to cover their mouths are turn their backs in mid sentence. Most of the time, it’s people who new me before the hearing loss. Honestly I feel it’s kind of sad & disrepectful. But I try not to let it get to me. Education is key…for most anyway.

    ~ L.

    Reply
  18. codeman38
    codeman38 says:

    I can very much associate with this.

    In my case, it’s even more fun, because my own disability is not a physical hearing impairment. Rather, it’s auditory processing disorder– which means that my ears work perfectly fine, but things get garbled up between the ears and the brain.

    It’s oh so fun to explain to people that no, not only can I not hear them amongst a loud crowd of people, but that hearing aids wouldn’t help a bit because the sound would just be a *louder* unintelligible garble. And when I’m really fatigued, it’s exhausting to decipher speech even in the clearest conditions.

    And the telephone? Forget it. The very sounds that I use to distinguish what people are saying– the higher pitches, like consonants– are completely muffled. At least CapTel is around now, which is a lot easier than dealing with the traditional relay system.

    I really need to learn ASL– I think it would be quite helpful…

    Reply
  19. Cynthia
    Cynthia says:

    Yeah … I really responded to this post.

    My own mother doesn’t believe I’m hard-of-hearing. Because I work so hard on speechreading, she is on record telling family members that I’m “faking” so I won’t have to take her telephone calls.

    Really, Mom.

    With Meniere’s syndrome eating away at my residual hearing in big bites, each year brings new deficits. I’ve had to resign from boards after realizing that what I comprehended at the meeting wasn’t the same thing as I read in the minutes.

    I’ve had to turn down live Internet radio programs.

    I’ve had to get a captioned phone to continue to do phone interviews.

    I come home from social gatherings with eyestrain and headaches.

    You’ve said it all: many people fail to understand just how hard we have to work in order to comprehend speech. And when we put in the work and stay connected? It can be misunderstood as “you’re not really hard-of-hearing”.

    My own mother. Sigh.

    Reply
  20. Astrid
    Astrid says:

    Interesting post. It’s intriguing to realize how often blind and deaf are being compared, but this important difference is overlooked: blindness (that is, total or almost total blindness, comparable to your deafness) is usually visible even if someone doesn’t use a white cane, but even profound deafness can go unnoticed if someone happens to have good lipreading/speech skills.

    Reply

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  1. […] life right now, I forget.    As irony would have it, I returned home to find a piece written by Karen Putz in my inbox.  It included the following:  “…hearing loss is often referred to as […]

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