Tolls of Hearing Loss by Pearl Feder

It seems as though I’ve had hearing loss all my life but I didn’t.  I’ve only forgotten what it’s like to hear conversation without saying, “excuse me,”  “I’m sorry but……,”  ” could you repeat that please?” Music was never the same but I adjusted. People with hearing loss are good at that.  If we aren’t good at adjusting, we are good at faking it. At least, we think we are good at it.  When I was twenty years old, the Otologist told me that I would be totally deaf by age thirty.

It’s been forty years since I lost all my speech discrimination in my left ear.  I avoided wearing a hearing aid in my right ear until I was forty years old.  Someone had the guts to tell me that I’m not hearing everything that was being said to me at meetings, and that I should consider getting my hearing checked.  That gutsy individual and I have been good friends ever since.  I did land up getting a hearing aid on my right ear and my life forever changed.

Over the past nineteen years, my hearing barely changed until about two years ago.  I needed some minor adjustments to my aid.  Then again, about three weeks ago, I put on my hearing aid and thought the aid wasn’t working.  I changed the battery thinking, of course, it must be the battery.  But over the next few hours I began to realize something had changed.  Voices around me sounded muffled.  I couldn’t catch the words on my radio while driving. I could not hear the voices on the telephone, and worst of all, my own voice didn’t sound right.  The voices on the telephone were too low. No matter how much I turned up the volume on both my aid and the phone, I couldn’t hear.

My throat was hurting at the end of the day and I realized I was speaking louder than usual because.  I was exhausted from the emotional and physical strain of “listening.”  My friends noticed not only was I not catching conversations, they had to tell me to lower my voice in public places.  Immediately, I made an appointment to see my audiologist.

I was hopeful the audiologist would find something wrong with my aid.  After all, I had a hearing test only eight months ago and nothing had changed at that time.  As soon as I entered his office, he introduced me to his fourth year resident intern.  Then, he informed me that they would be doing a full audiological evaluation.  This way, I would not have to repeat it in four months, a year from my last one.

I hate, hate, hate, hearing tests.  They always insist on testing my left ear, even though it has been in the profound range for forty years.  With the shooshing in my right ear, and the deafening words in my left ear vibrating through every bone in my body, I want to scream.  “Isn’t this illegal? You are blasting loud noises in my ear!  Is it possible to be any deafer than I am in that ear?”   My body is thumping to the sound of BASEBALL, ICE CREAM, HOTDOG, AIRPLANE,  . . .

I have to laugh at the words used to evaluate us.  Don’t the audiologists realize we have those words covered?  The right ear goes through the same torture.  Only this time, as the words become louder with the added shooshing, my right ear begins to hurt.  Haven’t these people heard that loud noises can make us deaf?  Jeesh, I want to rip the headphones off my head.  But I continue to be compliant.

At the end of the test, the intern says to me, I understand you are very sensitive to change, there’s been a small change in your speech discrimination and the Doctor will go over it with you.   Hmm, yes, I’m sensitive to changes in my hearing because I know my hearing loss issues better than you do, is that what you mean by sensitive?  Small change in my speech discrimination, okay, I can deal with small change.  The Doctor explains to me that my word recognition has gone down from recognizing 12 out of 25 words to 7 out of 25 words.  Meaning, eight months ago, I had speech discrimination of 48% and its decreased today to 27%.

However, that’s not what “we consider a big change” he states.  I immediately respond with, but, if I am in a conversation with someone or groups of someone’s, we don’t speak one word sentences.  We speak in a flow of words, which make a paragraph which turns into a conversation of 100’s of words being said.  If I am only grasping 7 out of 25 one word sentences, what am I really hearing in a paragraph of words?

The Doctor said, okay, let me have the intern read a paragraph from a book sitting behind you.  As far as I was concerned, he could have put the intern in front of me and I would not have been able to tell him anything that was said.

As it turned out, he was very surprised that I could not even tell him what the subject of the paragraph was.  He then decided to reprogram the aid, while the intern read the same paragraph. As you may or may not know, with all the new technology, the computer hooks up to our aids and can program it instantly.

The second time, I managed to give him three or four words but still did not know the subject or topic.  The third programming produced a much better result. Though I could not give him word for word, I was able to tell them the subject and a synopsis of what I understood the paragraph to mean.  I was thrilled but I was grasping for straws and with those results, all I wanted to do was leave the office.

I asked the Doctor why my speech discrimination had decreased and he responded that it was probably the hair cells in my coclear, dying. My heart sank. All I wanted him to do was tell me it was just the aid.

The Doctor asked that I come back next week. I decided to return after my vacation in three weeks so that I could have time to adjust.  As it turned out, within two to three days, I began to hear exactly as I did prior to the adjustment.  With my leaving this week to go on vacation, I did not want to start looking into alternatives.  What alternative do I have?  Once I see whether more adjustments to my hearing aid can or cannot help me, I believe I will need to see a specialist who can tell me the decrease in my speech discrimination is as a result of hair cells dying in the coclear.  If this is the case, than clearly deafness waited exactly 30 years to happen.

There’s a part of me that is feeling very panicked and anxious about losing the use of communicating by telephone, speaking to my friends in a restaurant, hearing my children’s voices and other life situations that involve hearing, listening, entertainment and so forth.  I’ve always dealt with taking my aid off and feeling very comfortable in the silence.  However, taking my aid off permanently and staying in silence “forever” is not something I can honestly say, I can get use to.

Yes, I may be in some form of denial. I want to hold onto what I have. I want another hearing aid.  More than anything, I want the Otologist to give me a prescription that will unstuff my ears. I want to wake up tomorrow and have my 48% discrimination back.  But deep down inside, I know that is not going to happen.

I know the road ahead is going to be difficult as I readjust my work life, my personal life and my emotions.  I have to be okay because I want to be okay and because it’s important to me.   I’m not going to say I’m not anxious because I am terribly anxious about this change. I need to hear from others who have dealt with this type of situation.  Right now, I plan to go on vacation for a week to take a breather away from my home which has no furniture, no walls and no floors, compliments of Hurricane Sandy.  I need to get away from work and telephone calls to reduce my stress with communicating.


Nalaga'at Deaf-Blind Theater Ensemble
Nalaga’at Deaf-Blind Theatre Ensemble

Last night, I attended the Nalaga’at Deaf-Blind Theatre Ensemble, Directed by Adina Tal,  at the NYU Skirball Center.   Nalaga’at has a permanent home located in Jaffa, Tel Aviv in Israel.

While waiting in the lobby, they had a Cafe/Bar  staffed by Deaf young people both from Israel and New York, who communicated through sign language. It was truly an experience.  Since I sign, I took advantage of communicating with the  Israeli staff to see the differences between American Sign, English Sign and Israeli Sign.  Due to my communicating with the staff, a long line formed behind me for the bar. I was somewhat embarrassed by my holding up the line. Finally, I decided it was time to move on.

As we sat in the lobby, I recognized people from different corners of my past who had come to see the show. It felt as though I were attending a reunion of people I had long ago been involved with during various stages of my life.  As we waited to be allowed into the theatre, two young, Deaf Israeli staff members stood on a small stage.  They taught the audience several Hebrew words to sign (English translation was held up on cue cards). I was quite impressed with the words I learned last night, as I was not  familiar with  Hebrew Sign.  Falafel, humus, Jerusalem, good appetite, good-bye. . .  (These were not at all similar to the English version.)

Now for the show. It was nothing like what I expected.  My expectations were that this was going to be performed by a deaf/blind group similar to that of a Broadway show. It would be entertaining.  How was it different?  It was the true life stories of each actor and actress.  The majority of the actors/actresses have Usher Syndrome.  Only one actor was born blind, but everyone was  deaf/blind. Some had hearing initially, and lost it.  Some were born Deaf.  All had hearing families.  Their vision was lost at different points in their lives. Some young, some at an older stage in their life.

The show was their personal stories.  Their adolescence. Their questioning God, and their loneliness, What their lives were like before losing their vision.  How hard it was to “just” be deaf, and how they felt alienated from their friends and families.   For those who lost hearing later in life, the loss of music, conversations.  Finally acceptance came, and then discovering they were going blind.

One moving story was about one of the actors who was born blind and lost his hearing at age 11 due to meningitis. He describes how a friend at age 14 gave him a cigarette, and how it made him feel “free and independent.”    Those who could see at one time spoke of the people they would never see again.  The newspaper that would never be read with a cup of coffee.  Most of all, their isolation and need to feel someone’s hand touch their hand to feel a presence.

During all of these personal stories, they were making bread and sharing their dreams.  Each spoke of what it meant to them to work, play, dream and hope.   My heart and mind were confused. I wasn’t sure whether  my heart was breaking for these extraordinary people, or if I should feel happiness in what they accomplished.  The experience was a very individual one.  I could relate to every story focused on losing your hearing later in life.  However, for me, the moral of the story, was that we all want the same thing.  To be included, to be loved, to find a partner,  to laugh, to dream and to feel we accomplished something with our lives.  This show is unbelievably creative.

I should mention, this show provided three large monitors with captioning, one on each side of the stage and one above the stage.  ASL interpreters to translate the Hebrew into ASL for the audience.  The actors/actresses themselves all spoke in Hebrew or used hand in hand Hebrew signing with their fellow actors/actresss who mostly communicated in this fashion. There were two or three actors and one actress who did not speak but only signed.  When the show was over, the audience was  invited to come up on stage, taste the bread that was baked  and have an opportunity to speak to the actors and actresses.  Every actor/actress had their own interpreter.  Now this is what I call total and complete accessibility.

After seeing this show, I will say this much, I am truly grateful for what I have, who I am and the life I’ve experienced.  Below is a short preview of the show.  It starts off a bit foggy but stay with it as its done purposely this way

Cutbacks for the Deaf in Israel and the Consequences for the Israeli Deaf Population by Nena Bar & Boaz Ahad-Haam translated by Omer Zak

The Hebrew version of this article can be accessed on the below link,7340,L-4326134,00.html

The Deaf (in Israel) struggle against cutback in interpreting hours
 Nena Bar and Boaz Ahad-Haam, two of the Deaf Protest leaders, explain the meaning of the cutback and its impact upon their lives.

By: Nena Bar and Boaz Ahad-Haam
Translated by: Omer Zak

We are deaf in a world of the hearing. The world around us is a world of the hearing. The music uplifts and gets millions around me to dance. American Idol and de Weiss heat the Tribal Campfire. Hearing is not only a cultural issue, is the essence of the hearing people: when a hearing person thinks, he hears a voice in his head and it is part of him.

As deaf persons, hearing is not important for us.  However discussing it is substantive, as we deny the substance of the hearing.  We see signs – the world is visual, both outside of us and inside our heads.  We told the hearing, we can do everything except hear.  It is our slogan.  However today this slogan is empty.

It is empty when pregnant parents, who find out that their fetus is deaf, get an approval for abortion; a baby who survived the selection process, will get a sweeping recommendation for an operation to repair his hearing which will be fully financed by the State without acquiring Sign Language even when he will not be like an hearing person.

When a deaf woman seeks employment, she is forced to settle for menial jobs or be sentenced to a career without promotions.  We say we can do everything, but they do not believe us.  They also do not want to believe us.  They do not persecute us, but we feel persecuted everywhere.  Our refuge is in our community.  However, now the external reality knocks on the door.

(Embedded: an interview with Gal Roknian and Tammy Shema explaining the consequences of the cutback.)

Election economics woke us up.  So yes, we are dealing with a technical clause, regulation, budgetary process.  Until the budget is approved etc.  Freezing interpreting services until budgetary approval is a wakeup call.  Not sonic alarm, which we do not hear, but flashing in blinding light.

This flash lighted the reality and pointed out a basic fact – we are vulnerable.  We do not have the power to determine the means of making the hearing world accessible to us.  The same world that insists that we adjust ourselves to its ways.  Without basic interpreting services, that meeting with the mortgage consultant becomes a terrible mistake for the next thirty years; the psychological counselling with our children becomes an ordeal in the depths of frustration, the rabbi blessing under the canopy becomes an event bereft of any meaning.

Need to emphasize.  We are speaking about 45 hours a year.  Every hour is more precious than gold.  We speak about a total of half a percent.  There are about 8,760 hours a year.  Out of them 45 hours make us accessible to the hearing world and the hearing world – to us.  This simplified calculation works out to a ratio of about 0.005.  Half a percent of our life.  So negligible amount of money for the state.

Almost as negligible as we are negligible in others’ eyes.  Therefore I am here.  Because I woke up: I am not negligible.  I shall remind you of it each time you consider worsening our situation and leaving us in need of your favors.  We all shall remind you.  By means of the protest today and by all means tomorrow.

What is a protest? In democracy, as a government method, there are many ways to influence the decision makers so they make the right decision. Elections, court rulings, professional opinions, the outcome test and the voice of the people.

As a minority group with interests, which are not obvious to the decision makers or contradict their interests, we do not express ourselves and do not show our world.  Several years, too many, we let the existing organizations decide for us and instead of deciding for ourselves.  The protest is the first step, in which our generation expresses its displeasure.

Continuous obstacle that begins before birth

So that the community of the decision makers will understand and digest the implication of the decisions upon our lives, and so that the general public will “hear” the justification of our requests, we need to explain to them our way of living. As a population, we are few but deafness affects all aspects of our lives. However, in contrast to the medical aspect of deafness, most impact is social. The obstacles which we face are due to choices of the hearing people who are our fellows in the Israeli community, not due to our inability to hear.

When an employer prefers to pass over a deaf person and hire a hearing person, it is because he has a built-in preference to employ someone similar to himself. This phenomenon affects both us and other groups, the disabled, Arabs, women and other minorities, whose differences become an obstacle. Being different has a “price.” When people asked a black hockey player about the racism that he encountered, he replied that a black playing in a white league game must pay a price. We pay the price every day, everywhere.

We understand it because this exclusion stems from the urge to be identical – similar. However, in contrast to other groups, our obstacle is never ending and begins before birth, at home – in our hearing families, who struggle to make us hearing and similar to them – and everywhere else.

In final analysis, only with other deaf, in the Deaf community, we have no pressure or obstacle. While we are satisfied with little and draw our life pleasures from the loves and endless quarrels within our small community; however, to buy groceries in a supermarket chain, we need more than this.

From a simplistic point of view, this situation of social obstacle has two potential solutions.  When the social obstacle cannot be removed, the state pays handouts out of its budget; when the social obstacle can be removed, the state enforces.  One one hand, financial support to those who are deprived of the ability to independently support themselves.  On the other hand, introduction of the deprived into the employment market by encouragement and punishment of discrimination preparators.  Also a combination of both approaches is a way that we will be happy to implement.  The politicians, who will make speeches, are the ones responsible for regulating the invisible hand of the market and via them we express our voices.

Basic principles

So where do we turn now? We declare the fundamental principles that the Deaf and HOH community demands from now on. Principles that until now we did not express publicly and clearly:

Transparency. Without the ability to know what, who, where, when, how much and why, we are in the dark and subject to the arbitrary decisions that perpetuate the exclusion and our powerlessness.

The Result Test. Decisions are made and progress is made in directions that do not benefit or are not helpful in the long range. As for the community, we feel that we are standing at the same place or even go backwards. Systems through which we pass, become transport systems – they move us forward (kindergartens, through the education system and welfare). None of them passes the Result Test for drawing conclusions for making improvements or changes.

Cooperation. No more decisions about us and concerning us, without our involvement. Sign language. Recognition of Sign Language is the cornerstone of recognition of our humanity. Everywhere we turn from today on, let us remember and remind what are our principles. Only if we are solidified around those principles, will we be able to change our dismal present and hope for a better future for us all.

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