Deafie on Deafie is easier, right? Um, no.

I’m often the identified person who is expected to attend to someone else with a hearing problem. Yes, I do have a lot of information, but most people don’t know that. What I am is up front about my hearing loss and ask for access so the hearies think I’m the expert and I’ll help everyone else with hearing loss because I have some vast store of insider knowledge and know just what to do.

I know about my hearing loss. I don’t have insider information on anyone else’s hearing loss. I’m not an audiologist nor an ear doctor, just one more deafie in the world trying to live my life and maybe help a few other people along the way.

I recently met a guy with bilateral hearing loss that is probably in the serious range, maybe headed towards profound. (See chart below) It took a few encounters, but it has become apparent to me that his loss isn’t just one of not being able to hear at a normal volume, he is missing chunks of tonality. And like many older people with hearing loss he’s got problems with upper registers, which includes women’s voices, birds, dripping faucets, and fricatives such as the /f/ in the word fine. It creates conundrums of being able to hear a phone ring but barely able to distinguish the conversation.

Unfortunately, many of the older late deafened are not tech savvy and are at a distinct disadvantage. Many have no hearing aids, have no idea about any services to help with hearing aids, don’t know the difference between analog and digital aids, and some don’t have computers, let alone smart phones, and rarely do they know ASL. The gent I met has no hearing aid, no smart phone, no cell phone, and barely has a functioning desktop computer. He also doesn’t have a clue about taking a pencil and pad of paper with him.

He has not acted on information I emailed to him; when I’ve asked about his follow up I get non-sequiturs. That tells me he is guessing at what I’m saying. Next time I know I’ll be seeing him I’m going to take my iPad and type in what I’m saying so he can understand me. Maybe I can show him that a pencil and paper or a tablet can enhance his ability to understand conversations. That’s about the limit of what I can do unless he follows up.

So, hearies, we deafies really don’t have an easier time of it with another deafie than you do. Not unless we both sign or we both understand a least something about coping with hearing loss through things like shared knowledge about equipment that can make life easier. One thing I do have that many fully hearing people don’t is nearly infinite patience dealing with a late deafened adult trying to cope.

Even if I do know about services and equipment it only goes so far because the other deafie needs to be able to gain my knowledge and then act on it. Denial is a wide river and people seem to be afraid of moving out of a comfort zone, no matter how uncomfortable that zone has become.


Celebrate Three Significant Songs

There we have it – today’s Writing 101 prompt – 3 significant pieces of music.

I decided to write the response on AnotherBoomerBlog because this blog addresses being hard of hearing, deaf, and dealing with a society that is in large part uncaring about people who are differently able. The deaf, blind, hard of hearing, physically disabled, etc. are tidily brushed to the margins.

A room with a view (yesterday’s assignment) could be metaphorical. It could be the internal landscape of a blind person. Their room could be full of wonderful smells and things to touch. There is no internal metaphor for three significant pieces of music because when hearies (people who hear) think of music they think of sound.

My first boyfriend was born without auditory nerves and had zero ability to hear music. He had no concept of music as a hearie would understand it. He felt vibrations, and his old truck’s radio rumbled bass all the time. He build a removable back for a couch that housed a bass speaker so he could feel the rhythm of music.

I tried to insert a youtube video with no sound, only sign, but after 15 minutes of swearing I gave up.  😦  Feel free to go to the F-You song American Sign Language performance with no sound. For the following songs the hearie challenge is to turn off the sound. Next go to Hero – it is closed captioned for hearies and the hard of hearing. Frozen’s Let It Go is also captioned as are some of the others. Country Music is next – Farmer’s Daughter. Then there’s Story of my Life.  Imagine by John Lennon.  Just the Way You Are. Lastly, go to Sean Berdy and 10 dancing kids – don’t worry, you won’t lose an eardrum.

Adding the incredible expressiveness of ASL performances to music that often the signers can’t hear makes a performance that is – to my mind – superior to sound alone.  Let It Go gains a new dimension when you see them really let it go.  Seeing the tears in Hero adds a dimension.

So here is my twist – how many of you who don’t sign can provide me the three best ASL performances of your life that are the most meaningful to you?  No sound allowed – or at a level where you can’t understand the words. You can chose from the above or find something else. You’ll find that only songs with words are meaningful unless it is dance.






Why I demand professionals act professionally

As so often happens, cross-pollination of ideas occurs between Facebook, Blogspot, WordPress, Readit, and many other sites.

I’ve been feeling as if this blog is full of nothing but complaints (at times) and then something enlivens me  to write yet again.

A person on another site, in a galaxy far, far away, suggested seeing the humor in being mistreated by medical personnel who can’t remember the person they’re talking to is extremely Hard of Hearing (deaf). I mean, aren’t they the dumb sort of person who talks louder when the person is a foreign language speaker as if that would help?

The humor in it? REALLY?!!!

Is it funny that medical professionals are too unprofessional to consider the needs of the patients they are serving?  Yanno, my insurance and my co-pay are what support the doctors and nurses and staff at the clinics. THEY work for ME. Would it be funny if I just didn’t pay them? Or did things that made it impossible for them to work with me? Like not show up and not pay for a missed appointment?

Lets put it in another perspective:  A man goes into an orthopedists office and can’t walk since his lower leg has been broken. He’s dragging himself in with his fingers. Does the nurse:

A. Open the hallway door and suggest the man drag himself down the hall on his hands, squirming like a snake?

B. Provide the man with a wheelchair?

If you picked A and are in a medical program of some type, please drop out now. Yeah, I know someone hurt that badly today would go to an ER, but the point is the same. Would you ignore the needs of someone who needed help?  We, the patients of the world, neither want or need anyone without common sense and compassion in any medical capacity. There are others far better suited to serve individuals with disabilities – which is all of us at one time or another.

I’ve had people ask me how I can be so incredibly entitled as to demand being treated like a human being. Why can’t I understand this is just a human foible? Doesn’t it just show how humorously inadequate people are that they can’t remember I’m HoH?

The difference between friends/acquaintances and professionals:

I have long-time friends who can’t remember I need them to walk to the right of me and that I will deal with (with some requisite eye rolling) because they are not my medical providers. I am not paying them to be there for me.  However, as soon as someone is working with me/for me in a professional capacity all bets are off. I will remind people a few times, after that, their inability to remember (especially after I tell the receptionist to remind them I’m still deaf) is beyond belief.

I’ve been a social worker and a lawyer and I d**m well never forgot a client had a specific problem. Why? Because I pay attention! Because it is critically important to the service I am to provide.

Over the past few years I’ve gotten to the point I’ve been known to stand stock still at a doctor’s office and refuse to follow someone who is talking away from me seconds after I’ve just told them to face me when they talk to me. I will sit near the door but refuse to respond to someone who refuses to speak louder than a whisper. Am I supposed to guess if someone is calling me or someone else?

I am a human being and I have a right to be accommodated for my specific needs. It isn’t difficult.  I’ve had volunteers at hospitals take note of what I need and walk up and gently touch me on the hand to let me know I need to go thither or yon.

I have friends or acquaintances who are hard of hearing, deaf, blind, or deaf/blind or who are orthopedically incapable of certain things, and I expect all of them to be treated with dignity and respect. I expect the mentally challenged and the mentally ill to be similarly treated with dignity and respect.

Just as no one should be forced to crawl down a hall, dragging a broken limb behind them, so should I not have to beg to be allowed to have adequate communication with professionals who are working for me.  They are not paying me to be there. I am paying them for their services. I don’t ask them to use ASL with me (though it would be lovely) but do require them to treat me with the dignity I deserve and I’ll return the favor.

I’ll say this for my doctor – he knows I can’t hear. His staff knows I’ve got hearing issues. I LOVE my doctor and his staff. My doctor treats body, mind, and spirit and it shows.



It’s been awhile

Yeah, I’ve been lagging in posting. Why? Probably because there have been few new challenges that have come my way regarding the hearing thing. Who wants to listen to a rehash of the old ones? Not to mention that I’ve been down with “the plague” – a severe cold exacerbating the asthma that gave me severe laryngitis and has now devolved into a long, drawn out bronchitis. All viral of course, so no treatment except to outlive it. (sniffle, hack, cough, sniffle)

I did end up at the ER with this version of the creeping crud. The consensus was I probably needed a chest x-ray to make sure I wasn’t getting pneumonia. So off I went. However, the laryngitis was so bad I could’t even whisper. This left me the option of writing or signing. I usually voice for myself. This time I thought, what the heck, ask for a terp so s/he can voice for me.

The hospital was WONDERFUL about it. Absolutely no problems there. Johnny on the spot. There were only three little problems.

1. The terp was contacted over a video system and the monitor was not exactly large. I could have used a telescope to get a better view.

2. The ER was very busy and I was not in a private area where one could hear oneself think – probably because someone with more severe problems was in there. Makes sense. Except for one other problem.

3. The interpreter could not hear the nurse. Even if the nurse was screaming into the designated sound area the terp was bewildered. It was an absolute avalanche of sound and everything hit the terp just like it did me.

However, I was able to sign to the terp and have her voice for me. The problem was that she couldn’t sign the nurse’s questions back to me because she couldn’t understand them. Eh? What was that you said? Huh?

That particular foray into remote terping ended up with the nurse and myself writing notes back and forth.

This little hospital really doesn’t have a lot of private rooms where they can put people with special needs. It is the size of a large postage stamp. But the staff is kind and caring so I wasn’t upset. We just worked it through.

Thankfully, I didn’t have pneumonia and went home with instructions to use Afrin Nasal Spray (sorry for the ad) for NO MORE than 3 days less my nose get addicted to it (A nose can get addicted? Who knew?) and to get 12 hour Sudafed (sorry for the second ad) and take it as long as I had symptoms. I still have symptoms so I’m still taking Sudafed. I ponder taking another run at the nose spray.

What this demonstrates is that while a terp who was there with me could have dealt with the noise level, the terp who is working remotely may be as unable as the deaf or HoH person to understand what is going on in a very noisy environment.

I now have a friend working for a company providing this sort of terping so I’m going to mine information from her and get back to all y’all.  🙂

And oops, I have to run now.  So without further ado, here’s a new post.

When things are handled right

I had the misfortune to go to a small, local hospital on Christmas Day.  I had a persistent ear infection that simply refused to give up the ghost. When the itching, burning, swelling and pain became simply too much to bear I decamped to the tiny ER in Ayer, MA.

By this time I could not get my hearing aid in my ear due to pain and swelling.  For all intents and purposes, I am functionally deaf when the HA is out and the ear canal is swollen.

To tell the truth, I can say “I’m functionally deaf” all day long to people in my regular world and have it serve no particular purpose, but this once it made a difference.

Everyone from the registration clerk to the nurse to the doctor were educated to ask (repeatedly) if I wanted an interpreter. They all knew how to get my attention. They all understood my need for a quiet location if I were to understand anything at all. They all got my attention before speaking to me and spoke directly to me without looking away.  I’m so totally impressed with all of them.

Because they accommodated me with a private room and quiet environment I was able to cope with a combination of what sound I could hear and lip reading. Also, to be honest, I didn’t want to wait for the staff terp to be called and arrive.  Had the conditions not been so ideal, however, I’d have requested a terp in a heartbeat.

I knew what I needed and I got the prescription ear drops promptly (ahhh, blessed relief!). However,  I’m still not wearing my hearing aid until the infection is resolved because I have to carefully sterilize the earbud before putting it back in so as not to cause another infection. Which means I’m still functionally deaf.

Now, to be fair, this is the same facility I’ve raised holy heck with a couple of times over what I considered inadequate treatment of a relative of mine. Different issues, though. Different doctors. Maybe more enlightened times are coming. We can hope so. I’m tickled pink.

What’s the point?

At a new doctor today. When I am at a new place I wear a large lime green button (see below). If staff does not read it what is the point of wearing it?

BTW, once they understood everything has been great.


Spy vs. Spy – Hearing versus Hard of Hearing

Recently I determined that I’d had another hearing loss milestone – I can’t find the “click” associated with a turn signal. So when I had my new fancy-schmancy earmold fixed I had my hearing aid sound levels tweaked.  It got raised a couple of notches.  In a quiet environment it was about the same, but I knew once I was out in the world it would be quite different – and it was.   I’m not sure I hear the “click” any better, but I do hear a lot more than I did before.  Maybe I’ll find the click in the noise.

Today I went to a spiritual gathering where about 13 folks congregated.  Hearing during the meeting is always exciting (meaning I miss a lot of what is said) but  the increased sound levels were helpful.  When people talk with their hands obscuring their mouths I simply don’t listen to whatever they have to say – besides, generally they are not talking to me anyway.

After the meeting is always a big pot luck.  Today, as always, the sound ended up being overwhelming.  It is like seeing a tsunami come at you – you can’t outrun it and there’s no point in trying to negotiate with it.  No one else even notices it.  In fact, they’re surfing while I go down for the third time.  Glub.

Being around a big group of hearing people means they will start off talking “normally” (whatever that is), but as time goes on it is as if they’re in a bar – the voices get louder and louder.  I’m always amazed when little people end up bellowing over the entire table –  size has nothing to do with the set of pipes on a person.  🙂

About half way through my head was pounding (noise headache) and I took off my hearing aid and decamped to another part of the “great room.”

I have no idea how hearies do it.  It’s like tossed salad – a carrot shred, a piece of iceburg lettuce, a radish slice, a dandelion green, and some salad dressing – only it is words being flung through the air.  “Iceland blue salt cream whale thank corn pulled rice,” I hear.  “Soft duck bird lamb sale mud zombie blue sulpher potato.”  Urgh.  Word salad.  “You pie want chicken dish salty spa volcanic balsamic pork chocolate gluten.” 

While a dozen signers (ASL) might have six conversations going I can drop into and out of them by paying attention to the signer.  No can do with hearing people – it is all or nothing.  I’m told if I’d always been able to hear I could join up and drop out of conversations by switching channels (sort of), but all I hear is, “Do you bug seven ocean fish butter.”  Oy vey.

And all this being said, hearies are who they are and this is how they communicate.  Deafies and the Hard of Hearing focus so much on communications that we are actually much more skilled communicators in many ways.

Hearing in the Dark

I was just reading 4 Eyes 4 Ears: Misadventures in Deafness by blogger Cynthia Dixon when I was reminded of my reality by one sentence regarding normally hearing people:  They can hear in the dark.  Frankly … that’s spooky. How do they do THAT?

For all of my “hearie” readers, I bet it never occurred to you that deafies and the HoH need light to either sign or read lips – or both.  I remember Deaf members of an open AA meeting at a local college complaining that when the lights went down in the auditorium they couldn’t see the interpreter’s signs or lip read the speakers.  I never bothered to go to that meeting – what was the point?  That’s like the Rime of the Ancient Mariner:

Water, water, every where,
And all the boards did shrink;
Water, water, every where,
Nor any drop to drink.

Like Cynthia, I pretty much can’t hear in the dark.  I can’t read lips in the dark.  I can’t see sign in the dark.  So those “sweet nothings” people talk about murmuring?  They really are nothing.

Want to talk to me in a theatre (assuming I’m crazy enough to go into that amount of sound)?  Hahahahahaha!  Forget it. My hearing aid is off and I’m using it as an earplug against the deafening noise.  I can’t see anyone well enough to read their lips.

I suppose the flip side to that is that, after years of being married to a blind guy I watched how he navigated his environment and now I can walk around in pitch darkness and navigate the same way.  Just don’t try and talk to me.   I probably won’t have my hearing aid in and I can’t seeee you.

By the way – you should all read Cynthia’s book.   It’s awesome.  🙂






Still Deaf…

I have often considered having a T-shirt made that says DEAF on the front and STILL DEAF on the back with the letters finger spelled letters ASL beneath STILL DEAF.  Someday, maybe, although the Deaf Community probably wouldn’t like a  partial “hearie” wearing it.  

Today I began physical therapy.  I’m fresh meat for the physical therapist.  They do have PTs who use ASL  which I have kept  in the back of my mind – just in case.

We began the “I can’t hear you” dance this morning. We did it a little during the evaluation, but that was in a small room where it is easier to hear so she didn’t really learn the steps. The actual pain and torture (hence, PT) takes  place in a very large room with hard surfaces and windows to reflect sound, as well as a number of machines humming, beeping and making other noises – especially if people are clomping away on the treadmill. THERE I am functionally deaf.

My PT is really trying. She does speak loudly, but not TO me.  She speaks AT me. There is a difference.  Sometimes I ask, “Are you talking to me?”  I don’t know – they always have two people going at any one time – getting warmed up, doing the exercises, getting cooled down or massaged or something. Often she has to repeat everything – sometimes twice if I still don’t get it.  I don’t recognize her voice – I rarely recognize the voice of someone I know well.

Early on today I reminded her, “You know, I’m still deaf.”  She smiled and responded, “What?  It hasn’t changed since  the last time I saw you?”  Next time I’ll wait until we’re doing the deafie dance of “I can’t hear you!” and say “I’m still deaf … and that hasn’t changed in the last few minutes.”

I know it is hard for hearies to understand the limitations of a deafie who can talk.  If I can talk then I can hear, right?  Um, sometimes yes, sometimes no. The more background noise the less I can distinguish what is meant for me.  I think I’m going to give her a quick instructional on getting the attention of a deafie.

I’m not sure I can find a video, but essentially you put a hand out, palm down, and flap it up and down in the field of vision of the deafie until they see you.  Oh, here’s a link to a video.   Hey!  I say, Hey!

Aha!  It IS me you’re talking to! – pointing to my self and giving an inquiring look back.  Oh, great, let me give you my undivided attention so I can understand you!

It is important that the deafie SEE it the motion, hence the “field of vision” instruction.  Flapping a hand at my back only makes a breeze, at best – or maybe you’re brushing lint off my shirt?

When someone is talking behind me I may be able to hear if they are on my right side and  are talking right into my hearing aid.  If it is on my left side I usually hear “Wah, wah,wah,wah” like the adults talk in the old Charlie Brown cartoons or I may hear nothing more than environmental noise.  I often don’t respond.  Why?  Is ME you’re talking to?

Below is a a Deafies version (of the somewhat creepy music video) “Is it Me You’re Looking For?”

Hello, hello, is it me you’re talking to?

I’ve been alone with you
inside my silence
And in my dreams 
I’ve heard your words
A thousand times
I sometimes see you pass
just out of lip-reading range

Hello! Hello! Is it me you’re talking to?
I can’t see your flapping hand,
I can’t see your inquiring face,
Just a sign is all I’ve wanted
My attention is open wide
Hoping I’ll see your lips move
And you’ll know what to do…

Okay, so it doesn’t rhyme exactly.  You get the point, right?  🙂  Keep me in mind when you run into deafies or half-deafies like me.  Make sure we know you’re talking to us so we can pay attention and not miss anything.