Month: July 2013

So Riddle Me This….

Real life situation.  A person is ill and goes to the emergency room at a very well respected hospital.  After several trips (being bounced between the patient’s general practitioner claiming the patient is too unstable to be seen in the office and the ER wanting the patient to be seen by primary care (playing “hot potato patient”) the ER personnel finally get proof the person is really very ill and needs inpatient medical care.  Two doctors (specialists) want to admit.  The family goes home, secure in the knowledge their loved one is being cared for.

The next day the hospitalist tells the sick person that because the ER can’t establish an IV  that the person will be discharged – while still very ill with internal infections.  And still in ER rather than on a medical wing, I might add.

Riddle me this – what is that hospitalist thinking?  Because all the medical personnel in the hospital are too inept to start an IV line let’s put a sick person on the streets?  That is certainly a unique solution to the problem of a sick patient with serious medical needs.  Sort of reminds me of the hospitals that hire ambulances to dump patients near homeless shelters if they can’t pay for treatment.

Acting as patient advocate I went into the ER, saw the patient,  got ahold of the head nurse, and announced that the patient is not leaving.  The reason for discharge is spurious and the patient is very ill.  I demand to speak to the hospitalist to see if she/he thinks the patient will go home and start an IV alone and then come back?  I’m  ready to go to the Director of the Hospital if need be.  This person is NOT going home in this state.

Having thrown down the gauntlet … about ten minutes later a paramedic arrives and starts the IV in a couple of minutes.  No problem.  Paramedics can start lines in the back of a moving vehicle going over a bumpy road.  Suddenly, the patient is going to be admitted.  The hospitalist is now  unavailable due to being in a “meeting.”

Now, imagine being Deaf or seriously hard of hearing.  Imagine not understanding why you are being discharged when you are clearly ill and the problem is with the ability of the doctors and hospital to provide basic medical care.  Starting an IV is not rocket science, even in a person with lousy veins.  An Interpreter isn’t an advocate, they are merely there to interpret.  Not everyone knows someone who has done patient advocacy and is tenacious in dealing with medical bureaucracy.

This should never happen to anyone – hearing or hard of hearing.  I know that Deaf Inc. in Boston has good advocates who work there.  I hope that in a case like this someone would know enough to call for help from Deaf Inc. or a similar agency.


No Child Left Signing

What David said… he’s The Man… 🙂

By BitcoDavid

An auditor for the No Child Left Standing law, was rewarded for his years of hard work, with tickets to see the legendary BSO doing Beethoven‘s Ninth. After a stellar performance of the Maestro’s magnum opus – considered by musicologists the world over, to be the greatest musical work ever written – our auditor was asked his opinion. “Well,” he replied, “I’m glad you asked, because I’ve made some notes.”

1) I noticed the chorus doesn’t do anything but stand there for a full 3 movements. I hope we’re not paying them for that time. They should only be paid for the time they’re actually singing.

2) What’s with this 1st violin, 2nd violin, etc., etc.? One violin should be able to play all the parts. No wonder Beethoven died broke.

3) In fact, the whole string section could have been replaced with a Casio keyboard

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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.

It’s all the cat’s fault

The Tuxedo cat known as Sylvester managed to get into the room and knock a bottle of bubble liquid (sans the top) off of a dresser – it hit the floor and splattered in a most astounding manner, catching me in the spray pattern.  It is now 12:30 at night and I am wide awake.  Sylvester split when I came up out of the bed like Oscar the Grouch.  The door is closed now, but I am still awake.  My head itches and I wonder about the kids checking the dog for fleas.  Can humans get fleas?

There’s plenty to think about, although the truth is that I’d rather sleep.  Fat chance.  Tomorrow I have a schedule a NY Taxi driver would envy, only I won’t get paid.  Drop one kid off at field hockey, pick another one up from Dad, figure out what to do to keep him entertained for awhile before going back to the school to pick up the field hockey maven, then make sure the iPad is charged for the little guy whilst I am at physical therapy (yeah, that should be fun and I’m assuming there will be a bribe somewhere in there to keep him calm), then back to town to pick up Ms. Field Hockey at her job at the Donut Shop, and then round up Ms. Gymnastics so we can get her ready for her lesson.

I’ve also got to fight with the State Department (yes, that’s right, the State Department) to get a copy of a death certificate from South Africa.  I swear, when this is over I am going to write a BOOK!  Only it will have to be fiction as no one will believe it. Argh!  The man has been dead since last December, just give me the death certificate, will ya!?  Fer god’s sake!

I’ve got lists of tasks that need to be done – people to contact about the Deaf Innocence Project – deans of law schools, department heads of deaf related agencies in Boston, clinical psychologists who can sign and evaluate the deaf, HEARD in DC to get names of prisoners in Massachusetts, and so on and so forth.  I guess I’m doing this in fits and starts between the other duties as assigned for this week.

Because of the injuries I often have one good day followed by several days where I can’t quite get out of bed and if I do I can’t quite function the way I want to.  It slows everything down.  Was just told it can take up to 2 years for the bone in my arm to heal entirely, although it seems to be well on its way – more or less.  I’m grumping less about the rotator cuff now that I understand it had to be split to put a screw through it and into the head of my humerus. Still, the darn thing is a real PITA.

Today I was listening to a book on tape (me and any car in the vicinity) and ended up pulling off to the side of the road to learn words for “adolescent, juvenile, crime, criminal, illegal, leave, left and there” among others. How?  I have a great ASL Dictionary on my iPhone. Not going to drive and gawk at them.

I’ve got to contact the Apple store – there’s something wonky about the iPhone – it won’t back up – fortunately I have an extended warranty.  I guess going to the Apple store happens on Wednesday because I have no idea how to work it in before then.

I think my new SIL just “got it” about how deaf I am.  He had someone over chatting business today and I took out my hearing aid and told them, “I took out my hearing aid, so I’m functionally deaf now – you can talk and I’ll not understand a word.”  A little while later his visitor said (loudly to me) “Wow!  You were telling the truth.”  Apparently the SIL had been trying to get my attention with NO LUCK. Yup.  Deafie – that’s me.  So later he started talking loudly to get my attention and then I explained to him that he needed to talk TO me – as in face to face – for me to really hear what he has to say.  Life is getting better. 🙂

So I’m rambling tonight – it is all the cat’s fault. Really.  It is.  Now all my busy things are circling around my head.  Go to sleep, little blogger…

Learning to Sign Left Handed

For all you lefties out there – this is no big deal for you, but for a right hand dominant signer who has lost a lot of the use of right left upper arm and shoulder – this is a huge deal.

For non-signers, you may not understand either, but when American Sign Language (ASL)  does not take place around the waist.  It takes place around the face, head, shoulders, and upper body most of the time.  When you can’t move your arm without pain that varies from OW! to Aieeeee!!!! it’s a problem.  Actually, it is a huge and almost insurmountable problem.

I am beginning to realize that I’m going to have to start signing using my left hand.  It is a cross dominance issue.  I’m right eyed and right footed, but learned to be left footed when working with dogs, so it can be done – only I don’t use my foot to communicate with.

Finger spelling is going to be a trip.  Signers have strong hands from all the use their hands get – and my strong hand is my right one, not my left one.  (sighing) I remember practicing and practicing with my right hand and having a sore hand.  Now I wish I’d worked on both at the same time, but we always hear to use our dominant hand.  Only my dominant hand is hard to get up to the target space used for most sign, and many motion based signs are flatly just painful.

It is not that I can’t sign left-handed.  It is that it is going to be like starting all over again in so many ways.  I’m bummed.  It could be worse – I could have entirely lost my arm or lost 100% of the function in it.

For those of you I sign with, have patience with me… I’m going to have to crawl before I can learn to walk.  My right arm isn’t coming back online any time soon…


There is a link to a blog going around on Facebook called Hearing Privilege. It is about a year old, but still worth the read.

Probably the most salient point from it is:  Hearing privilege can be best explained quickly by saying it’s similar to the concept of white privilege. In a nutshell, white privilege is “a way of conceptualizing racial inequalities that focuses as much on the advantages that white people accrue from society as on the disadvantages that people of color experience.” (Wikipedia) It’s different than racism and prejudice; racism and prejudice are essentially when a dominant group actively seeks to oppress or suppress other racial groups for its own advantage. It is a privileged position; the possession of an advantage white persons enjoy over non-white persons.

It should be noted, though, that privilege comes in lots of shapes and sizes.  It is not something just the deaf experience.

It is pretty much an “I’m normal, you’re not” sort of thing.  The DeafBlind find themselves at a disadvantage with the deaf, the blind, and the fully hearing and fully sighted.  The blind experience sighted privilege.  Paraplegics experience able-bodied privilege, as do quadriplegics. People with intellectual disabilities, people with cerebral palsy who appear to have intellectual disabilities, and so on and so forth.

This is something to simply think about. If you are with a deaf person, do you answer for them without being asked to do so? It’s certainly easy enough to fall into that trap.

It is important to remember that everyone wants to be treated like a competent person.  Are we inclusive in our dealings with others?  You might be surprised.  Watch and see what you do.  Do you ever finish a sentence for someone?  Exclude someone from a conversation? Make a choice that is not yours to make?


Brain Stem Implant

I thought it would be good to mention this since we discussed CIs recently.  A few years ago a Deaf Attorney of my acquaintance had a brain stem implant since he could not have a CI.  At the time it seemed sort of cutting edge and my perspective was that the brain stem was someplace you really didn’t want to be mucking around in since it controls things like breathing.  But his operation was a success and he’s happy with the results.

Individuals who have damaged auditory nerves and damaged cochlea can potentially benefit from a brain stem implant, although I have no idea what the process is to get that sort of treatment.

I linked to a wikipedia page (above) because I’m not finding a whole lot of data on the web on this issue.

Here is a link to an ABC news article about a 3 year old child who received a brain stem implant and his delighted response to hearing voices.

Having met up with David of tonight at an ASL Meetup we took time to chew the fat over the issues of implantation of the deaf, those individuals who could not benefit from it (those with damage to the auditory center or the Brochal center of the brain) and then went on to try to figure out if direct connection to the visual center in the brain stem would work – but not being doctors we have no idea.

This is a time of huge changes for deaf culture as many individuals who might have become part of it may now be oral deaf or merely hard of hearing.  Language is the repository of culture and  hope that we always keep ASL.  Frankly, I think all parents should be taught Baby ASL because infants can respond to sign far early than they can words.  All children benefit from ASL.

100 years from now I’d love to see what has happened regarding treatment of the deaf and the blind.  Will it be some Brave New World or more of the same old stuff?

4th of July Fireworks and Your Hearing

The 4th of July is almost upon us.  Most states now strictly regulate fireworks, but it seems there is always some wiseacre who gets a bunch of firecrackers and sets them off all night.  These loud noises can scare canaries to death (literally) and send dogs and cats fleeing from their homes so they get run over by cars or lost for days (or forever).

I hope pet owners try to keep their animals inside or on a leash when outside and keep outdoor animals inside where they are protected from loud sounds.  Our little McKinley will be wearing a ThunderShirt to keep her calm (and yes, it really does work!). I know someone whose Sugar Glider died from fright over loud explosions last year, so even being inside might not do it for the little and easily frightened animals.

For those of us who can and do suffer from hearing loss I do hope that if you are in possession (legally or not) of loud fire works that you take care to wear hearing protection and that your family and friends who are there are also using hearing protection.  Unlike some animals (birds) we cannot regenerate the 30,000 hairs in our inner ears if/when they are damaged. When your hearing is gone it is gone forever.  The best you can hope for his hearing aids or CIs or the like and it is never the same as the real thing.

So, have a safe and sane 4th of July.  Remember that fireworks are lovely and fun and can also start fires.  Remember the 19 “hot shot” firefighters who recently died fighting a naturally caused wildfire. Be careful not to add to that toll, no mater where you live.

Happy Independence Day!  Let Freedom Ring!