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May 3, 2012 / angryhohwoman

Perception is Everything

There’s an invisible community in every society, and I’m a member of it.  We look like you, we talk like you, and we have families just like you do.  In fact, we’re so hidden it’s hard for us to identify our own kind.  We don’t share a distinct language, so we don’t form a separate culture.   But there is one thing we have in common – we stare.

Why?  Because using our eyes is essential to interacting with the society around us.  If we don’t stare, communication is impossible. By now, you probably realize that I’m referring to hard of hearing people who read lips.

Deaf awareness continues to grow; interest in American Sign Language is higher than it has ever been, thanks to a popular television show with deaf actors.  But in a sense, Hard of Hearing awareness is separate from Deaf awareness, and MUCH needs to be done to educate normal hearing people.  My recent interactions with a young married couple (Tony and Anna) in my denomination were a major learning experience on just how desperate this awareness is needed.

Before I relate my experience, let me give a little background story.  I’m in my late 40s, need to lose a few pounds, wear hearing aids, have silver hair, and I’m single. Hot, huh?  Because I speak like a normal hearing person AND play a musical instrument, people do not comprehend that I have a hearing loss. Vocational Rehabilitation categorizes me as having a severe disability due to my hearing loss, but normal hearing people just think I have a little trouble hearing due to the normalcy of my speech. My audiologist informs me had I grown up with the level of hearing loss that I now have, I would be using sign language only and would have “deaf” speech.  For me, listening to speech requires intense concentration with a focused stare at the speaker’s lips.  This staring has been misinterpreted many times, usually by people close to my age.

I first met Tony at a church-affiliated school while doing a short-term project.  At a staff meeting, the principal introduces me to the faculty and tells everyone that I am hard of hearing and need to lipread. I bump into Tony a few times around campus, and he tells me how he came to know God.  He is friendly every time I run into him, and I think to myself, “I hope he has a girlfriend or wife in the church – our denomination is hemorrhaging people from his age group.”

About six months later, I move about 30 miles closer to the church school.  I visit my favorite church and discover the new pastor preaches so softly that I can only hear 20-30 words out of the sermon.  I know from past experience that the sound person always has the volume on the sound system as loud as possible.  I then begin attending a larger church; my children and I attended this church from 1994 – 2005, and it was nice to see a few familiar faces from all those years before.  I sit in the same area of the church I used to sit in previously – close to the front where I can lipread and hear the sound monitors. I briefly see Tony at the church accompanied by a young woman who looks remarkably like my daughter, and thought – “Good for him!”

Despite my hearing loss, I play the piano, and when I see the church bulletin advertising auditions for musicians, I thought I’d try out for it.  The young woman I saw previously with Tony is the one doing the auditioning, and she introduces herself as Anna. I play some music and we talk for a little while.  I tell her about my hearing loss, hearing aids, and need for a speaker monitor close by when accompanying the praise team. She seems fine with my hearing loss, and in the course of our conversation mentions that she and Tony are married.

The following week, after the church service, I sit on the front pew, waiting for Anna to finish the Benediction.  Tony sits down on the front pew and we talk for a minute or so.  With a smile on his face he tells me he’s married, and I say, “I know” and keep talking.  Tony’s expression changes to anger, but he doesn’t say a word.  He stands up suddenly and leaves.  I think to myself, “Wow – that was abrupt!”

After the Benediction is over, I ask Anna to show me some of the techniques she uses to make her chords sound so nice.  She shares a few different “tips” and I have trouble understanding a couple of them.  I ask her to let me record her with software and she agrees.  I’m scheduled to play for the praise team the second weekend of the following month – in three short weeks.

The following week, I text Anna, and receive no response.  By this time, I’m desperate to learn the techniques so I have time to practice them by the time I’m scheduled to play. Since the congregation and praise team are both used to Anna’s accomplished piano techniques, I feel the need to improve mine so there won’t be such a glaring contrast. Knowing that my phone doesn’t always send/receive texts, I send her another text and still hear nothing from her.

The next week, I see Tony at church and his body language is very stern.   I attempt to say hello, but he ignores me. I’m not a confrontational person, and can’t figure out why he was upset, but decide to let it drop.

During the song service, I realize I can use my camera to record sound, and possibly learn at least one of the techniques from a recording without having to bother Anna.   Taking care to preserve her anonymity, I turn the camera face down and aim the lens at the pew in front of me, recording parts of two congregational songs.  The video consists of only the seat of the pew.  I’ve been recorded playing the keyboard/piano many, many times at other churches and didn’t think anything of it.

At the end of the church service, when the Sanctuary is mostly empty, I walk up to Anna while she’s still playing.  Again, to preserve her anonymity, I film only her hands on the keys, as done on the instructional DVDs and youtube videos I’ve watched. We speak briefly, and I mention that I recorded parts of two congregational songs earlier and she gives me a look of absolute horror.  I tell her that I didn’t film her – that the camera was aimed at the pew only and she is speechless, looks even more horrified, and leaves quickly.

Was I too proactive?  My interpreters in college constantly preached the importance of making sure necessary accommodations were in place, and I learned that lesson well.  While pursuing both my bachelor’s, then master’s degrees, I had note takers, interpreters, and for a short time – audio recordings of lectures.  In work staff meetings, I supplement lipreading with an FM system to bluetooth speech directly into my hearing aids. When I visit different churches, I always inform a board member or the pastor that a loop system for hearing aid users would increase enjoyment of the service for those with hearing loss, and that mere headphones aren’t loud enough for everyone with a hearing problem. In other words, I advocate for myself and for others.

As I stood there in the church completely, totally bewildered, the answer hit me like a ton of bricks.  I feel simultaneously nauseated and horrified.  No wonder both of them have acted very odd around me!  Due to my intense lipreading, they both thought I was FLIRTING with them.  When Tony informed me of his marital status, my nonchalant response angered him.  Why?  Because he thought I was disrespecting them!  I was floored to realize this.  Even now, as I type this, I feel sick to my stomach.

Having normal hearing people misinterpret lipreading for flirting has happened to me many times in the past, but NEVER with people so much younger than I.  Usually I’m able to notice, and clarify that I am lipreading, NOT FLIRTING, before things go too far.  But I didn’t catch on to it this time.  It didn’t occur to me that this very young couple might misinterpret my lipreading as inappropriate behavior. What a horrendous experience.

At this point in my life, it is tempting to remove my hearing aids, turn off my voice, immerse myself in the Deaf world, and use only sign language to communicate.  But that would be taking the easy way out. Yes, I am tired of expending the massive amounts of energy required to understand others, and have it be totally misinterpreted for something entirely different, and thus labeled odd and strange. But – instead of giving up on the hearing world, I will promote Hard of Hearing Awareness to the best of my ability, in the hope that one day this will be the norm:

Man:  “Are you hard of hearing?”

Woman:  “Yes, I am – you probably noticed that I’m lipreading you, right?”

Man:  “Sure did!”

Woman:    “Glad you asked.  I would hate for you to think that I’m flirting with you when I’m not.”

How can we better educate normal hearing people?  Please leave a comment and share your thoughts.  Thanks!

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38 Comments

Leave a Comment
  1. Kristin Cornwell / May 4 2012 12:10 am

    Thanks for sharing this story its amazing & i can completely relate bc i am also HOH. 🙂

    • angryhohwoman / May 4 2012 2:16 am

      It’s really frustrating and embarrassing, isn’t it? We HOH need to do a lot more to educate the hearing. Maybe we need to wear t-shirts, caps, and/or pins to let people know we’re lipreading, not flirting.

  2. HearingGirl / May 4 2012 1:43 am

    I really enjoyed the story thanks for sharing. I am hearing and i agree that we do not know a lot about HOH ways and I hope that the couple will apologise for their coldness when they find out the truth.

    • angryhohwoman / May 4 2012 1:53 am

      HearingGirl – they just haven’t interacted much with HOH people like me. They didn’t realize that we have to push so hard when it comes to hearing and understanding, which comes at a great cost.

      Check out this hearing loss simulator:

      http://www.phonak.com/us/b2c/en/hearing/understanding_hearingloss/how_hearing_loss_sounds.html

      My hearing is actually worse than the moderate hearing loss setting. Now you see why lipreading is ESSENTIAL. And lipreading is exhausting. For example, anytime I’ve had to go to an all-day training session, I’m completely wiped out when it’s finished, and have to go to sleep as soon as I get home. It sucks every bit of energy out of me to focus for 6-8 hours of listening.

      • anotherboomerblog / May 6 2012 2:17 am

        No kidding. That kind of stress leaves me limp as a rag.

      • angryhohwoman / May 6 2012 2:30 am

        Even a few hours at church WIPES ME OUT and I need a nap.

  3. Laura / May 4 2012 2:13 am

    Amazing, absolutely WOW its hot!! Thank you for sharing. I related as a HOH person of the frustration and misunderstanding in so many other ways. Never been accused of flirting. Hopefully not ever.

    • angryhohwoman / May 4 2012 2:22 am

      Normal hearing people don’t normally stare at other people’s faces unless there’s something else going on, so I can understand WHY they would think I was flirting if I were NORMAL HEARING. But I told both of them that I’m HOH… The only thing I can figure out is that they don’t have much experience with HOH people.

  4. In Light Of The Cross / May 4 2012 11:56 am

    Very well written and eyeopening! We all need to understand each other better. Wow!

    • angryhohwoman / May 4 2012 4:39 pm

      Very true – we do need to understand each other better! I think we HOH people need a huge campaign to get normal hearing people to understand more about HOH people, not just Deaf.

  5. jo bertloff (@jobe216) / May 5 2012 5:57 pm

    I’ve worked and socialized for 20+ years with deaf & hard of hearing people. This is yet another misunderstanding surrounding the public’s lack of awareness. This is a new one I hadn’t heard before! Like Willard Madsen’s poem, “You Have to be Deaf to Understand,” we can only imagine what it must feel like to experience the discouragment and dissappointment due to people’s lack of information and understanding. I’m with you! Every chance I get, I add a bit of explanation or suggest “What’s That Pig outdoors” by Henry Kisor. Your blog relays similar sentiments; the extreme concentration and additional mental processing lip reading requires, the fatigue, and other consequences.
    Thank you for sharing this and please keep us up to date on how others can help ‘the cause’, eh!

    • angryhohwoman / May 6 2012 1:46 am

      A friend recently sent me that poem, and I read that book years ago. Because I’m not completely deaf, my experience is different – I feel like I have one foot in the deaf world, and one foot in the hearing world.

      Extreme concentration is right! Sometimes I just want to give up!

  6. anotherboomerblog / May 5 2012 11:40 pm

    Reblogged this on Another Boomer Blog and commented:
    Something for those who are not Deaf or HoH to consider when interacting with a hearing impaired individual. We focus “hard” to understand. It is survival for us – and apparently easily misinterpreted.

    • angryhohwoman / May 6 2012 1:34 am

      Thanks for reblogging! Speaking of focusing “hard” – today an audiologist told me that normal hearing people expend 5% of their energy to listen all day. Those with a SLIGHT hearing loss expend 50% of their energy to hear. Imagine what it is for those of us with moderate to severe hearing loss still trying to use our ears to listen?!

  7. anotherboomerblog / May 5 2012 11:44 pm

    Reblogged! An excellent post. I’m so incredibly proactive about saying, “I’m very hard of hearing” that everyone who knows me knows I don’t hear well. I also speak very well because for the first 18 months of life I could hear just fine. And though I lost one ear in an instant, the other has taken a long time to get worse. I could no longer sing like I used to and I can’t handle the vibrations from playing guitar any more (gives me tinnitus attacks). I suspect I would sound “deaf” if I had my present hearing from childhood.

    You have to tell Normies what it is like to be HoH. I tend to sign in groups even when I talk so that folks understand I really don’t hear well at all.

    • angryhohwoman / May 6 2012 1:31 am

      I’m trying to improve my sign language skills now – maybe I should sign to normal hearing people so they can REMEMBER that I don’t hear well. I’m on the borderline of qualifying for a cochlear implant!

      • anotherboomerblog / May 6 2012 2:10 am

        Exactly! Put people on notice!

      • angryhohwoman / May 6 2012 2:15 am

        Gotta do it! Thanks for the encouragement!

      • anotherboomerblog / May 6 2012 2:11 am

        BTW, I like signingsavvy.com.

      • angryhohwoman / May 6 2012 2:24 am

        Thanks! I’ll check it out. Years ago, I found this Website, but haven’t looked at it much lately: http://aslbrowser.commtechlab.msu.edu/browser.htm

      • anotherboomerblog / May 6 2012 2:28 am

        Thanks. Doesn’t work on ios5

      • anotherboomerblog / May 6 2012 2:29 am

        Also check out ASL Meetups in,your area.

      • angryhohwoman / May 6 2012 2:32 am

        A friend just told me about some meetups at Panera bread. I’m going to a Deaf church tomorrow and we’re all going out to eat afterwards – ASL immersion time!

      • anotherboomerblog / May 6 2012 8:22 pm

        Not sure where you are at, HOHWoman but in MA there is a Deaf Mass in Newton. I considered going for the experience, but is it a long haul for me and I’m not of that religious persuasion so I’ve never gone. I do meetups and I took a few classes at Deaf Inc. and am working on my own now with and without people who can sign.

        Honestly, if I had to spend 2 hours at a church – any church – I’d probably have a seizure or something because I am also ADHD/ADD and sitting that long, even with medication would drive me totally batty. I sometimes go to the local Unitarian Universalists and an hour or so there is sort of my limit of “hearies” going “blah, blah, blah, blah, blah.”

        There should be some sort of Commission for the Deaf and Hard of Hearing or help through Vocational Rehab in terms of where to learn sign. Also, if you have a smart phone there are ASL apps that are pretty good. Let me know if you want the names.

      • angryhohwoman / May 6 2012 8:43 pm

        Sure – I’d love to know about the ASL Apps!

        I’m in the hot, humid South.

        Got to run – going to ASL class now. Thanks!

  8. Cherilyn Clough / May 6 2012 12:54 am

    Wow! I am not HOH, but I wouldn’t freak out if a stranger stared at my lips, I would ask them if I have spinach in my teeth or something. Hopefully then they would explain they were reading my lips.I have had friends who were deaf and I figured out what they were doing and it was nothing to worry about. I think the couple who got so paranoid about you should have let you know why they were upset with you instead of avoiding you and making a scene about it. It actually seems like a weird and arrogant story on their part. Seriously, not everyone stares to flirt. And the fact that there was an age difference and they were recently married makes it even less likely that someone would flirt with them and who would flirt with both of them? Flirting, BTW consists of much more than staring. It could include staring, but usually flirting would entail some sort of conversation about certain subjects which I am sure you were not doing. I’m sorry this happened to you, it’s not you, it’s them and maybe when they have been around a little longer they will realize how silly this was!

    • angryhohwoman / May 6 2012 2:14 am

      Believe me, there weren’t ANY conversations about “certain subjects.” They both knew about my hearing loss. I guess they don’t think people with a hearing loss need to lipread! When I go to meetings with other HOH or deaf people, we all look at each other’s lips. No one thinks anyone else is flirting. We do what it takes to understand and help each other understand.

      • Cherilyn Clough / May 6 2012 2:18 am

        Yeah knowing you, I knew you were simply trying to learn music–what a sad situation!

  9. anotherboomerblog / May 6 2012 2:27 am

    Maybe you should make up a hand out. When talking to a HOH person 1) make sure they know you are talking to them or it is like the cartoon of Charlie browns mother saying, “Wah! Wah! Wah!”. (2) face the person you are talking to. (3) keep your hands away from your mouth. (4) enunciate and pronounce distinctly and clearly to enable lip reading. (5) do not yell, it distorts sounds, do speak on a strong voice. Please note that if the HOH is not looking at you that you are not talking to him/her.

    • angryhohwoman / May 6 2012 2:34 am

      When I design my business cards for my other Website, I’m going to put some Communication Tips for normal hearing people to use with HOH people. Hopefully, this will entice people to keep the card.

  10. anotherboomerblog / May 6 2012 8:24 pm

    Consider going to the minister and explaining the problem and have him/her help out with this.

    • angryhohwoman / May 6 2012 8:41 pm

      I did – sent the pastor an email with a link to this a couple of days ago. Haven’t heard anything back yet. But I’m done. I’m no longer interested in going back to that church. Think I’ll stick with a Deaf church. I don’t need the frustration inherent in going to a hearing church ANY LONGER.

  11. TripodMA / Jun 11 2012 11:44 pm

    Empathy pains! I’ve been there, done that and have quite a few t-shirts. The first few times guys said to me they’re married or have a girlfriend….out of the blue in the middle of a conversation…I was really puzzled thinking ‘Great, great, good for you. And that relates to this conversation (about this hobby, about sports or about your work assignment) HOW?’. It’s like when little kids suddenly shift topic from talking about a cartoon show and blurt out they have puppy, but it’s really odd coming from an adult.

    Then I talked to a friend about it and she told me they probably thought I was “interested” because they perceived my trying to make out what they’re saying as a romantic prolonged look, even though I don’t tilt my head or bat my eyelashes or anything. She said next time ask “Why did you feel the need to say that?” and look at them like they’re mental.

    With some people, guys or gals, I can tell it creeps them out when I watch their mouth from a variety ways they act, like looking down, bunching their eyebrows together or whatever.

    Just a thought about your situation…the lipreading and that you ended up going to his church after having met him, then the coincidence that you play and his wife plays too probably freaked *her* out and maybe she thought you were stalking him. Maybe after her letting you know he’s her hubby she told him to back that up and say to you too.

    Especially In a church kind of setting I always find it jaw dropping to see “Christians” act with cruelty (assuming, undermining, pretending you should be able to read their mind, making faces and ignoring) instead of him asking first time “Well, hi. What brings you here? Glad you could join us. I’d love for you to meet my wife after service. She’s up there playing music today.”

    And his anger face and her look of horror…in the future if someone makes faces at you again, asking “What do you mean by doing this?” as you make the same face, is OK to do.

    I’m sorry you have to go through this kind of stuff.
    I get all sorts of different meanness almost every day. When a kindness happens, I’m floored.

    That tips card is a really good idea.

    • angryhohwoman / Jun 12 2012 3:59 pm

      TripodMA – thanks for your advice! Making the same face right back at them is a good idea. My brain freezes when people act in ridiculous ways and I’m trying to figure out why the person is doing it. I don’t usually think about “dumping” it back on them – but I will try to remember for next time. And I KNOW there’ll be a next time as long as I have to deal with normal hearing people!

      What’s your hearing loss story?

  12. TripodMA / Jun 12 2012 6:38 pm

    True, the element of surprise does that to me too. 🙂

    Hearing tested in elementary school showed some deficit. I remember waiting for the next tone so I could raise my hand…and waiting…and waiting. The nurse unplugged the earphone jack and reset the headphones on my head after cranking a few knobs and was looking concerned. It didn’t change anything. I still couldn’t hear certain ones or could if she cranked it up. After that I always got seated close to the teacher.

    Like you I played piano, and I also played guitar, but some years later I couldn’t hear well enough to tune manually and I couldn’t play by ear anymore unless I wore an earbud and listened over and over and played it over and over with my other ear stuck on the guitar body (for acoustic guitar). I could “fake it” by watching others play, but it’s not the same. Piano is easier because if you can read sheet music or chord charts… you know…you just place your fingers accordingly and count time. But, I don’t play anymore.

    Then, tinnitus found me about 5 or so years ago and I know my hearing is worse in general because I can’t make out or can’t hear at all what someone says if they turn their back or put their head down or whatever. When a bunch of people talk at the same time, I’m like …arrrrgghh! I use CC for TV otherwise I miss what’s being said or I mis-hear it.

    But, there’s a bonus now and then. The other day someone in my car turned on the radio for a minute then asked if I knew who was singing. I couldn’t make it out. They said, good because it was Justin Beiber and he’s terrible. lol

    Anyhow, I don’t have insurance so going to an audi is out of the question, but I keep hoping to win the lottery though 🙂

    Did that pastor write you back yet?
    I’m glad you went to another church. I hope it’s all going well there!

    • angryhohwoman / Jun 12 2012 8:12 pm

      Have you ever contacted Vocational Rehabilitation for help with hearing aids and other adaptive equipment? If you are in the workforce, getting training (education), or looking for work, they may be able to buy some for you. They purchased my last two sets of HAs, and I’m getting another pair in a few weeks. Due to budget cuts, they have stricter guidelines than they used to, but they are an amazing government agency and really do a lot of good for people.

      The pastor asked for my phone number (twice), but never bothered to call me. This is taken from the pastor’s email:

      “I am sorry about your experience, I understand that xxxxxxx and xxxxxxxx are both sorry about what happened and would like to talk to you about it too.

      I hope to see you tomorrow at church and maybe we can talk personally.”

      But – I don’t want to attend that church anymore, so I haven’t gone back.

  13. TripodMA / Jun 12 2012 8:52 pm

    Thanks, yah I went to VR. They made it clear that I would be draining the system by needing transportation at times. They weren’t nice about it. I decided that wasn’t the route to go.

    Someone I know did put up with the local VR ladies just so she could get HAs. They were really unkind to her and had her in tears. She didn’t want to do training or go to school so she lied to them and said she was going to start an in home day care. She got her HAs, rarely wears them and babysits once in a while. Go figure.

    Well, it seems like the pastor passed your thoughts along to the couple and that they did come to understand.

  14. anotherboomerblog / Jun 12 2012 9:41 pm

    Vocational Rehabilitation is just that – it is to help people get into a vocation/job because of a barrier to employment. If someone is not going to work then it really is not a good use of their money to invest in a person because they could use it for a person who will work and needs help.

    The reality is that you have to be really motivated to use hearing aids after years of not hearing so folks who don’t actually need them don’t use them. It took me years and many advances to get what I have now. I still get sound headaches. I still have issues, but am in love with this technology. I wear it (I only have one functional ear – sort of) every day and I’m thankful as hell I’ve got it.

    Vocational Rehab workers are not mean. They have a specific job to to to help rehabiitate people to get back into the work force. They have very limited resources and lots of desperate people who need the help to stay employed or get a job.

    Tripod – were you looking for work or looking for a ride now and then? Those are two different things.

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