Deafaphobia? Is it them or us?

I have a bilateral sensorineural hearing loss.  We hear those words often but they mean different things to each individual.  I am only aided on my right ear because my left ear is totally unfriendly to any speech discrimination.  Or should I say, speech discrimination is unfriendly to my ear?

I once tried an aid on my left ear, many moons ago, with no affects.  I wear my aid on my “good” ear from the minute I wake up in the morning until I go to bed.  The only time I usually remove it during the day, is when I get jock itch in my ear.  Since last Thursday, I’ve developed extreme pain in my ear and on the crest of the helix.  You know, that part of the ear that has nada to do with hearing.  It’s where u would stick the earmold under that little sucker.

Today is the first day I could not wear my hearing aid due to extreme pain and let me tell you, it was a real eye opener for me and the people around me.  I have never gone this many waking hours out of the house without my aid.  First off, I found the people I work with not able to deal with me.  WOW! Now for the surprise, these are my teammates and we work with the hearing impaired and deaf population and their families.

I guess it’s true when we say, you don’t know what it feels like till you’ve been in my shoes.  Hearing people really do not understand deafness, let alone a hearing loss. Maybe it’s their fear of the unthinkable.  It immobilizes people when we discuss our unability to hear.  The very idea of not being able to hear a discussion, a disagreement or the hearing persons fear to communicate with us because WE cannot hear them.  So afraid to initiate a strategy to communicate with us for fear of catching what we have. 

Then, I encountered the people in the stores, on the streets and the dangers of walking in between cars to cross streets. Naturally, I can’t use my phone, which means, I can’t communicate and others can’t communicate with me, which means I’m going to be one pissed woman by the end of this week.  I’m very social and love to communicate.   The I’m in your face type of person I guess.

Lastly, there’s my family.  Everyones has their mouths wide open to over emphasize what they want to say to me.  It’s so weird and it’s also pretty scary to actually not hear the voices of the people I love.  I guess I’ve taken the assistance I get from my aid for granted.  And friends, co-workers and family around me, have taken my hearing loss and wearing an aid for granted.  I guess now they realize I am not hearing anything and that I am truly hearing impaired though one cannot officially call me deaf.

Don’t you just love when a hearing person says, wow, you have such great speech for a person with hearing loss?  It blows my mind.

Oh by the way, my Doctor really impressed me today. The man actually took out paper and wrote the questions he had for me and had me answer them (verbally of course).  He did not want me to put my hearing aid on because of the pain.  Oh and by the way, this was my Internist not my ENT. 

Here’s one of the reasons I dislike ENT Doctors.  Many years ago, during a phase where I refused to be aided, I went to an ENT Doctor because I was having terrible sinus problems.  As soon as I tell him I have a hearing loss he calls in his audiologist to do a hearing test.   I showed him my audiogram which was taken several months ago by my audiologist. But no, he wants one from his office.  I refused.

This ENT Doctor proceeds to look in my ears after I tell him about my hearing loss, show him my audiogram and explain that I have no speech discrim in my left ear.  The man looks into my ears, looks very seriously at me and says, I don’t see why u can’t hear out of that left ear, it looks perfectly fine.  With that remark said, I stood up, said thank you for your time and left (as fast as I could).  I decided from that moment on, that people, even many well meaning and not so well meaning professionals in the field, do not understand us.  It’s as if they have deafaphobia, the unimaginable! the unthinkable! 

So what is my point?  I raise my glass to all of us for holding our heads up high, for not allowing this to drag us to the grave and for continuing to educate those who hear.

0 thoughts on “Deafaphobia? Is it them or us?

  1. Thanks. This is a great reminder to all of us who fight the good fight every day that educating the public is important. Sometimes I feel I go over board educating co-workers, friends, and everyone around me. I’m sure they get sick of hearing all about my ‘hearing issues’, new aids, and the politics surrounding all of that (no ins. coverage for hearing aids, inadequate accommodations, etc., etc. ) As you pointed out, half the problem is we look and seem too normal– which is exactly the reason I tell people I am deaf, not hard-of-hearing, or hearing-impaired. Deaf people ARE “normal” people not matter how we communicate. Hearing loss can and does happen to anyone. And no matter how we choose to deal with it– whether it’s a hearing aid, cochlear implant or ASL– there will be times others may be inconvenienced by our inabilities to hear. The resistance to ASL scares me, mainly because I have been losing my hearing for over thirty years and my own family still doesn’t get it. The expectation is that I will continue to wear hearing aids with itchy ear molds, or get a cochlear implant when it’s ‘time’ and generally bend over backwards to accommodate them– all because it’s too inconvenient learning to communicate visually with someone who can’t hear. Thanks for this. Hope your ear heals soon.

  2. Ask your dispenser for a supply of Comply temporary earmolds to use while your ear heals. They last a few days, maybe a week before replacing

    He may have to bump up the anti-feedback setting a bit, too.

  3. Now, as for the ENT:

    He was exactly right in calling for a test, since you reported a symptom — Hearing loss.

    Let’s try a tabletop thought experiment: You’re an ENT, and a new patient comes in the door with little, if any documentation — You have to start from scratch.

    Now, let’s say you complain of a sinus infection; but hen you also say you have a hearing loss. But, you chose to ignore the report of the hearing loss, instead relying on the patient AND NOT a medical report.

    How does he know that you don’t now also have a conductive component to your SNHL? When the audie checked you, I’ll bet she also ran a bone conduction test &/or tympanograms to see if the infection had spread.

    Do some ENT’s route a few too many tests to their audiologists to jack the bill? You bet. And, do they also hope the audie will sell a pair of high-markup hearing aids. Sure. It happens every day.

    But, continuing this tabletop thought experiment, let’s say you didn’t have a quickie diagnostic audiogram run, the ENT didn’t treat your pathology correctly… And you end up with something REALLY nasty?

    As a former hearing aid dispensing engineer, I’ve worked with a number of ENT’s. Almost all of them are conscientious, and a few were ethically challenged, hijacking patients.

    If you have a good working relationship with your Family Practice Doc .AND. he’s reasonably competent, then you should be fine.

    Good luck.

  4. Cheers to You!! We do hold our heads high on most days, but some days we get weary. Some days we get tired of re-educating the same people over and over again, or educating the many new people we come in contact with in our day!

    I, like Kim, sometimes feel I over-educate, but what else can I do to get people to remember that I can’t hear? That my hearing loss isn’t getting better and probably never will! Sometimes I think people consider hearing loss as a minor illness, something you’ll get over.

    And yes, I hate when people compliment me on how well I speak, or tell me how well I do for someone who is deaf. I know they probably think they are lifting me up by paying me a compliment, but really It makes me feel even worse, like I’m to be pitied need a pat on the head.

    The world does seem to suffer from Deafaphobia!!

  5. Great post and I totally agree with you.

    Even well-meaning individuals cannot possibly understand how difficult it is to communicate when you cannot hear. I too wear my hearing aids all day long – I have started not wearing them for short periods at home to try and get myself, and my family, used to what it will be like when my hearing finally degrades to the point where aids are useless.

    The same goes for audiologists. An audi with normal hearing can use their audiology knowledge and experience to suggest hearing aids and programmes but they can never understand what we are hearing and how things sound with the aids in.

    I’ve written about this before:

    It’s not just hearing problems though, same could be said for being blind, losing a leg, etc. Until you’ve experienced it you can’t truly understand it.

  6. I’m trying to get up the courage to leave my aids behind for a day just to remind myself how difficult life is without them. I have moderate to severe (progressive) loss and I only remove mine to sleep and shower.
    After having a c-section a couple of years ago, I was hospitalized for 4 days and left them out to sleep on and off during my stay. I thought that the medical staff would be prepared for a deaf patient once my husband had informed them, but it was a nightmare. Even the pediatricians would come in at 6 am, speak to me for 5 total minutes while I’m half asleep fumbling for my aids, trying to get the batteries in and the only part of the conversation I would hear was the last line, “So do you have any questions?” Grrrr! They could see me trying to get my hearing aids in, I was asking them to wait so I could hear, they had been informed prior to their visits, it’s in my chart. How can doctors, of all people, be so insensitive?
    I just recently started my own blog to help educate my friends and family as to the degree of my loss and the life I live because of it.
    Thanks for sharing your views and experiences!

  7. Hope your ear is feeling better soon. What an eyeopening day it’s been for you, and for those around you. Be kind to yourself!

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