A Hearing Loss & Late Deafened Blog

Hard of Understanding

In Hard of hearing culture, Hearing Loss, late deafened, Lip Reading on February 20, 2012 at 10:18 pm

How often do I tell people I’m hard of hearing? Not often these days because they only speak louder which distorts word discrimination. Now I tell people I’m half deaf instead because deaf = lip reading. I’m not perfect at lip reading… okay, it’s called speech reading now but I need all the help I can get. Clearly watching them speak, gives me more clues to what sounds I should be looking for. They know if I’m ‘deaf’ talking louder won’t help but facing me and speaking a little slower does. Half deaf works for me.

That often leads to, “Which ear is your better ear.”

“They are both about the same,” I tell them.  At least that’s what the audiologists tell me. I think my left ear is better.

Saying I’m half deaf is easier than explaining how I hear… and don’t hear all at the same time. It’s all noise to me but I can’t make sense of the noise. I know they are talking but understanding what they say is all together different. Call my name from a crowded room and watch my reaction. I can’t tell who’s voice it was let alone which direction it came from. I have to scan the room to see who is waving their arms to get my attention.

One night at meeting with other hard of hearing folk, I told them I know I’m hard of hearing but that is misleading. What I really am is Hard of Understanding. They all laughed but I was serious! Having sensorineural hearing loss is not like being deaf. People know I hear because I respond in some sense even though I don’t know what they said. Or sometimes I hear perfectly well what they said with no rhyme or reason causing them to accuse me of ‘selective hearing.’ I wish! It’s confusing to them and me. I don’t why I heard this and not that. I refer to this as No Man’s Land. I’m caught in the middle.

How do you you others with sensorineural hearing loss get by? And how do you describe it?

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  1. I think, and based on painful experience, you HAVE to tell people exactly what you can and cannot hear, unfortunately you will not notice what you miss and be viewed stupid if you don’t. People with loss are forever trying to hide the fact, we’ve all done it but the result is just the same. I actually found at the end that telling people I could not follow what they were saying was the best thing I ever did because then people made allowances and some (Not all), made a point of ensuring I was kept in the loop. With speech reading effectiveness at less than 30% I’ve never understood why it isn’t the norm to declare that. Having been hard of hearing, severely deaf and profoundly/totally deaf, I think being HoH was by far my worst experience. You can spend half a lifetime out of it HoH.

    • I’m out of the closet about my hearing loss. Being hard of hearing is a sort of no man’s land which is hard to describe. Speech reading only gives me clues of what sounds to look for. Hearing people seem to think we get much more than the 30%. I’m just looking for all the help I can get.
      “I’m not following you.” That’s pretty good too!

  2. “Hard of Understanding!” I love it.

    I sometimes tell people that I get all the vowels but miss a lot of the consonants. — That’s an overstatement but it seems to be something they can think about –. Then I follow up by saying I have a stenographer in my head who tries to string the sounds I hear into actual words and sentences. Then I’ll add that she’s wonderfully creative but not always accurate. If that gets a laugh, well, putting them at ease helps ultimately helps me, so I’ll also add that she belongs to a good union and so steps out for breaks from time to time. That helps them (and me!) cope with the times when my brain hits overwhelm and just plain stops comprehending speech — even if I was doing OK a minute ago. –Because I DO have “selective hearing” — it’s just that I’m not the one who makes the selections for when it’s good, bad, lously, or totally gone!

    My eternal thanks to Randy Rutherford for the ‘inner stenographer” imgage. He calls his “Roxanne.” Randy does wonderful one-man shows about his (and our!) hearing loss. If he’s ever in your area, drop everything and go see him. That laugher of recognition helps everything.

    • When I get to sit down with people, I tell them how I hear using the vowels vs consonants description too. When I’m just going through a grocery line or at the bank, I found being “half deaf” is the quickest, easiest way to information back and forth to each other.
      The inner stenographer is great! That cracks me up and I like it. I may have to try that one some day, thanks for sharing.

  3. I think I have tried everything to describe my hearing loss. The past few years I have simply been saying I can’t hear well instead of putting a label on myself. I don’t have a problem with the labels, but like you, I have found that all of the labels seem inadequate in some way. “can’t hear well” says it all. Depending on the situation I will go into more detail– “I can’t hear well and I read lips.” or “I can’t hear well and I need you to look at me,” or “I can’t hear well and I’m just not getting what you’re saying. Sorry.”

    Love your Hard-of-understanding. It’s perfect. I’ve always been able to hear enough speech to know when people were talking. Before I got my CI everyone sounded like the adults in Charlie Brown cartoons.

    • I used to use “don’t hear well” but it didn’t seem to work for me. Maybe that’s because I didn’t use the rest of it, “and I need you to look at me.” That’s sensible, I wonder why I didn’t think of that then? Now I’m in the habit of saying half deaf.
      I did take ski lessons here recently and let the instructor know I wouldn’t be able to hear while going down the slope. I also told her, “If I can’t see you, I can’t hear you.” She was very, very good about making sure her mouth was out her neck gator and being somewhere near me when talking. I love it when I advocate for myself and it works!

  4. I say I’m hard of hearing because that’s what it is. I can hear and speak and I rely on both sounds and lip reading. If anyone starts to be loud, I’d tell them they don’t have to be loud, just talk normally and look at me. People are supposed to look at another person in the eye – anyway, it’s respectful… People shouldn’t assume that if they meet a deaf or hard of hearing person, the rest are the same. There’s varying degrees of everything in life.

  5. Thanks to everyone for contributing to this conversation.

    I want to expand on something Candy added. It IS respectful to look another person in the eye — in this culture.

    Like so many people in this country, I’m bi-cultural. In the community I grew up in, it is considered very DISrespectful to look another person in the eye. A young person or a child would never look an adult in the eye. A clerk in a store, unless he or she is much older than you, would be being rude if he/she looked you in the eye. Looking someone in the eye is often understood to be confronting someone. I think this is also true in many Native American communities and cultures, and in many other communities in the world.

    Most hearing aids — mine, for sure — are set up to pick up the voice of someone directly in front of you, as if that’s how everyone communicates. But in my community, this position says “confrontation” and to sit down in the position to talk to someone — especially about something important — well, they read it as, “here she comes and she’s trying to pick a fight.”

    In my community, if you want to talk deeply with someone, you sit down beside them. You want to both be looking the same direction, as if you share that (because you do) and as if you want to move in a common direction. THAT is what is necessary to communicate. It would be so rude — and, well, mean — to stare at someone who’s grappling for words to say something important.

    Kinda hard for lip-reading. Really hard for hearing aids.

    I finally fired an audiologist who insisted on sitting face-to-face and who bore into my eyes in her efforts to communicate. She meant well, but her demeanor just made me clinch all the way to the pit of my stomach. I couldn’t communicate to her. I couldn’t say anyting important to her.

    But then I found an audiologist who made a setting so that my microphones pick up the sound to my right. So now I can sit next to my close friends and have important conversations with all the help my hearing aids can give me. It has made a world of difference to me. Without this adjustment, my HAs didn’t work well in the “home” part of my my world. I also want to add that this setting is also great for hiking and walking with people, and for when I’m driving a car and want to hear my passenger. I think everyone should get this setting! (It sure beats tripping over a root or a bump in the sidewalk when my head is turned to get my HAs focused on my hiking companion’s words! Better for my aging bones, too!) I love it!

    So, while I certainly agree that there are a lot of rude people out there that we have to deal with, please also hold the thought that occassionally the people who aren’t looking you in the eye are conveying their respect to you. And that, even if you tell such a person that it’s OK to look you in the face, well, it’s just not that easy. I know, it took me a long time to learn how to project my voice better for my hearing-challenged friends because, of course, I was raised to never raise my voice at my elders. Her just saying “It’s OK to yell at me. Please do!” doesn’t magically erase and override my home training and my culture.

    And I wouldn’t want it to. Because I love the thoughtfulness and respect in my home culture. I like the big, sprawly, noisy “mainstream” culture I also belong to. And I also love the kindness and thoughtfulness in my newer, “hard-of-hearing community.” These are all a part of me and I want there to be room for all of me in these wonderful new circles I’m traveling in.

    • Wow, thanks for sharing that. You gave me something to think about. I like the idea of sitting next to each other to talk rather than from straight across. It’s more intimate. It’s great that hearing aids have so many programming capabilities now day. I remember when it was normal setting and T-coil only.

  6. Hello!
    New here. This is a little different, but I was taught to use “active listening”. I was told to repeat back what I thought I heard; this allowed the speaker to correct me if I misunderstood. I like this idea, but it seems to set people off. They don’t realize that I’m trying to use a technique that helps me better understand. Instead, I think that they just believe I’m saying the obvious for no apparent reason. I love “hard of understanding”! That fits perfectly! :o)

    • I like telling people what I thought I heard (if I was able to put something together) because sometimes it can be funny what I come up with. Also so they get an idea of how I hear or how wrong my hearing goes sometimes. I don’t get to do this all the time though.
      I try to repeat back the parts I heard to get people to leave that off and give me the word(s) I’m missing. They often repeat the whole thing over anyway. My boyfriend is famous for it and I have to remind him, “No, just tell me what I missed.” He’s getting pretty good at miming these days. :-)

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