Shel asked, What was it like?

Me-- when I could hear well. (1961)

Shel wrote a nice comment in my post On the Fence, and asked about my childhood. I guess he wanted to gain a better understanding of what it feels like to be late-deafened.

You're right: I can never fully understand where you are coming from. You can also say you can never understand where I am coming from as I've chosen to own ASL as my mother tongue, and thereby my Deaf identity. It's a long story, dear. I do invite you to read my blog on growing up in a Hearing family at Shel: A Deaf Canadian's Thoughts. This is in response to Open Minded Deaf Observer's negative perspective of life in a Hearing family and life in general. He's entitled to his perspective, and so am I entitled to mine. (So are you to yours! :-)) There are some things you might not understand, but do please feel free to ask me. If you are willing, would you mind describing in depth that experience as a child in school and outside of school? I'd love to hear about it... "hear"... talk about puns!

I've been thinking how to answer this question--'what was my hearing childhood like?' First of all, I want to say I appreciate that you want to understand.

I grew up hearing. **shrug** I'm not sure what more you need to know about that. Do you wish for me to describe what hearing was like? I can't.

I have tried to think of different analogies that might help, but I've realized it's impossible. I've read comments from Deaf people who have said music means nothing to them, or that they wouldn't want to hear because the world is "noisy." I understand that, because when you wear hearing aids many sounds are unpleasant. However, hearing aids do not even come close to natural hearing.

There's a richness to sound you can't possibly understand unless you've heard it. Sound is rarely painful and not usually annoying to people with good hearing. The human ear is every bit as miraculous as the eye.

Of all sounds, music is sublime. There's good reason every culture all over the world celebrates with music. Did you know music probably came before speech? Almost all animals sing or chatter to attract mates. Humans are no different. Read Your Brain On Music for more information about how music and rhythm evolved. Anyway I'm not telling you this to make you feel bad. I just want to point out how significant sound is to most hearing people. I want you to appreciate how deeply rooted sound is in our human evolution and how connected it is to our emotions. I could tell you about sounds I used to love, but it would be like describing a beautiful sunset to a blind person who has never seen. There aren't words enough.

I don't mean to offend, but music can even enhance orgasm, which is why many hearing people use it to seduce a date, and play it while having sex. It's also evokes spiritual and transcendental experiences, which is why it is used to celebrate God.

Some hearing people love music more than others. I started playing the piano at age four-- the age I was in the picture above. I took ballet dancing, played flute in my school band from fifth-grade on and sang in my church and school choirs. I loved piano best. I haven't completely lost music, but I don't hear it the way I used to and that has left a big void.

Some Deaf people have said that I haven't accepted Deafhood if I don't love being deaf. To me, that's like a childless woman telling a mother who has lost her child that it's wonderful being childless. Once a parent, always a parent -- even after a child dies. There's no going back. It's the same with hearing. I can't go back and pretend I never heard.

So when Deaf people say that I need to move on, that I need to celebrate Deafhood, or that I need to choose which "side of the fence" to sit on-- hearing or deaf, I want to scream, "How DARE you!?" You can't possibly know what it means to become deaf unless you have heard. You've always been Deaf. (When I say 'you' I don't mean you personally Shel, I mean the 'anyone' you.)

I agree I can't possibly know what it's like to be you either.

Life is worth celebrating, whether Deaf, deaf or hearing. Deafhood is no more special than any other way of being. I'm celebrating my own life and my own personal journey, which happens to be neither hearing, nor deaf. I do not grieve the loss of hearing, but I sure do appreciate the meaning of what I've lost. There's no going back.

Smiles,
Kim

DING! DONG! The Witch is Deaf!

Last week I blogged a little about my frustrations with bus drivers failing to notify me visually when we were about to approach my bus stop. If you missed that, I'll recap a little. I always tell bus drivers I'm "deaf "or "very, very hard-of-hearing" when I board. They always assure me they will let me know when my stop is approaching, then they don't. I had been dreading this bus ride to the neurologist ever since I made the appointment last month. Thought I would update you.

Several of you suggested writing a note, and I thought that was a great idea. I'm not really all that bus savvy because I don't ride the bus on a regular basis. Except for the opera and other special events, I avoid Seattle whenever possible, and usually someone else drives. BUT-- I had to write down all the stops, route numbers, streets, transfers, and alternative schedules on a piece of paper anyway. So I flashed this at the bus driver when boarding, while announcing I was deaf, or "practically deaf" at the same time.

Using the modifier 'practically' in front of the word 'deaf' helps hearing people to understand why I can speak even though I'm deaf. It's like saying, "I'm not really Deaf, I'm just merely deaf." A song from the Wizard of Oz, "Ding Dong the Witch is Dead" plays in the back of my mind whenever I utter these words -- the line the coroner sings when he pronounces the wicked witch deceased,

"As Coroner I must aver, I thoroughly examined her. And she is not just merely deaf, she's really most sincerely deaf!"

Then the Munchkins chime in with their chorus-- "Ding dong the witch is dead! Lalalalala- lalala- lalala lalalalala-la-LA!LA!" This is really true! That's how my mind works.

So I rode on the bus to the Emerald City with Oz songs playing in my head. Did y'all know that's Seattle's nickname? Emerald City!

I knew where I was getting off the first time. The second driver was great. He simply said it would be the second stop after we got downtown, so I didn't need anything further from him. The third bus driver said he would tell me when it was my stop, but it turned out to be a long drive and I began to get nervous after a time. I asked a woman next to me to let me know when my stop was coming up, then she had to get off. As more and more people got up to leave, I was able to move forward. Finally I found a seat close enough to the bus driver to see his lips. When he got to my stop, I saw him announce it. I was just getting my stuff together when he turned, pointed, and nodded at me. I was surprised he didn't forget. The ride back went about the same with me telling the drivers, pointing to my list of routes and streets, and trying to sit in a spot where I could read the drivers' lips. One time a passenger over heard me tell the driver I was practically deaf. When we got into the right part of town, he told me my stop was coming up before the driver announced it. So all went well.

NOW-- the OTHER thing I wanted to mention. . . I don't know if this happens to many of you, but whenever I see a new doctor he or she always wants to know about my idiopathic hearing loss of course. It seems whatever is wrong with me, they feel it might somehow be related to my loss of hearing. There have been times I've been visiting the gynecologist and had to explain the hearing loss in great detail, as if that might have something to do with my vagina. It doesn't!! My hearing loss also has nothing to do with my teeth, eyes or moles that need to be removed. But it doesn't matter. Every doctor always wants to know all the fascinating details, and then I can see the gears turning. . . Next they wonder if my hearing loss has something to do with the other aches and pains in my body. When I explain I have had a progressive hearing loss since childhood, they want to know WHY. The appointment ends up being about my hearing loss and not the thing I went there for.

No one knows for sure WHY. This is not all that uncommon with hearing loss. That's why there's a name for it -- "idiopathic" -- which means the cause is unknown. I have been to several specialists over the years who have come up theories-- the most common being that it was caused by the measles when I was young. "Measles" is only a theory, not fact, because the hearing loss could have been caused by some other auto-immune disease, or maybe even drugs given to me when I was sick. No one knows. While I realize most lay people might find the concept of "unknown cause" unsettling, I should think a doctor would understand. Yet, time after time I find myself explaining to doctors how it is that I have a hearing loss of unknown causes.

And even STILL-- after all that -- the doctor wants to know who is currently "treating" my hearing loss NOW-- as if there's something to treat. How can an otolaryngologist "treat" a hearing loss if there's no known cause? Also, last I heard there was no treatment for permanent hearing loss. Most doctors must know that, right? So what is there to treat????

This whole line of questioning leaves me baffled, and it's another reason I hate to see new doctors. Last week's visit to the neurologist was no different. Because, as usual, I explained all that, then he looked at me askance repeating skeptically, "So! You have a hearing loss, but no one knows why?"

Me-- "That's right." (Oz tunes beginning again. . .Lalalalala- lalala- lalala lalalalala-la-LA!LA!)

I mentioned names of otolaryngologists I've seen in the past, and that seemed to satisfy for the time being, but honestly I haven't seen a doctor specifically about my hearing loss in quite awhile--except for the one who tested me for the cochlear hybrid last November and that was no more than an audiology exam and consult. He isn't "treating me."

Here are the lyrics to the song playing through my head on the bus ride--


Munchkins: Ding Dong! The Witch is dead. Which old Witch? The Wicked Witch!

Ding Dong! The Wicked Witch is dead.

Wake up - sleepy head, rub your eyes, get out of bed.

Wake up, the Wicked Witch is dead.

She's gone where the goblins go, Below - below - below.

Yo-ho, let's open up and sing and ring the bells out.

Ding Dong' the merry-oh, sing it high, sing it low. Let them know The Wicked Witch is dead!

Mayor: As Mayor of the Munchkin City, In the County of the Land of Oz, I welcome you most regally.

Barrister: But we've got to verify it legally, to see

Mayor: To see?

Barrister: If she

Mayor: If she?

Barrister: Is morally, ethic'lly

Father No.1: Spiritually, physically

Father No. 2: Positively, absolutely

Munchkins: Undeniably and reliably Dead

Coroner: As Coroner I must aver, I thoroughly examined her. And she's not only merely dead, she's really most sincerely dead.

Mayor: Then this is a day of Independence For all the Munchkins and their descendants

Barrister: If any.

Mayor: Yes, let the joyous news be spread The wicked Old Witch at last id dead!

Yes Mike, I get it.

Yes Mike, I understand.

I have this deaf friend I practice ASL with. Her name is Kate. We meet every so often for lunch at this shopping center where there are a bunch of different restaurants. Normally we go to an Indian place and sometimes we go to an Italian place, or a Thai place. Recently we found a deli we like.

Usually, Kate does all the "oral" talking to the wait staff to give me an opportunity to sign as much as possible. Additionally she does hear a little better than me-- or maybe she lipreads better-- I'm not really sure. Our audiograms are almost the same, but she was born deaf and I have had a progressive hearing loss for over thirty years. She grew up having oralism forced on her, then picked up sign later after she moved away from her parents. We're both part of the Hearing world now. We have Hearing families. We talk. But we're deaf too. Neither of us wear our hearing aids at home, and we enjoy not wearing them when we're out.

I was told by my audiologist when first diagnosed that if I had been born with deafness I would not have learned to talk well. Hearing aids just weren't that good in the late 50s/early 60s, so most people my age who were born deaf have some deaf speech. It has nothing to do with intelligence-- as YOU know. Newer hearing aids are much better and younger people have had better correction. Doctors who know anything about hearing loss can look at my audiogram and know I wasn't born this way because of the way I talk.

Anyone who knows anything about language acquisition knows it's the same when learning foreign languages. For example, I have a friend Iwona (pronounced Ivona) who grew up in Poland. When she moved to the US, she spoke five languages fluently, but not English. She said she will always have a foreign accent when speaking English because she learned English too late in life. (I've talked to others-- a friend from Yugoslavia and a few others who have said the same thing) In order to speak a language with no foreign accent, you have to learn it before age fourteen-- give or take a few years. There's a reason for this I won't go into here, but the same concept applies to deafness and speech. If you hear well when you're young, most likely you'll continue to speak like a hearing person all your life even after going deaf.

So, back to Kate and I on our outings-- it often goes like this. . . We'll walk into a place for lunch. Maybe there's a crowd of people. We will start signing and decide if we want to eat there. "Do you want to eat here? Looks crowded. Ask how long the wait is. . .." Finally, she'll go up to the desk and ask orally how long of a wait. At the same time she tells them we're deaf and we won't hear our names called. Then she comes back to explain in sign it's a fifteen minute wait or whatever, and we're third on the list. . .

The wait staff stare at "the two deaf signing women" and assume from this exchange that I'm non-oral because Kate has done all the talking. They only see me signing, never talking. Sometimes they seat us right away despite telling us there would be a wait. I'm not sure if it's because they feel sorry for us, or if they're feeling extra charitable or if they simply don't want signing women in the lobby.

Sometimes if we're standing outside on a street corner signing, cars will slam on their brakes so we can cross the street. This NEVER happens to two hearing women standing on a street corner chatting. I think maybe the flying hands gets driver's attentions. But also I believe when people see ASL and flying hands, maybe they fear we'll suddenly jump out in front of their cars.

The time that really made me burst out laughing was in the Thai restaurant. As usual, Kate did all the talking. She even ordered orally for both of us. When the waitress asked if I wanted my tofu fried or baked, Kate asked me in sign, I answered back in sign, then Kate relayed this information to the Thai waitress. I simply needed the practice, which is why I didn't speak. Also I couldn't understand the waitress's accent and Kate does hear a little better than me, or maybe she lipreads better. I'm still not sure. Kate also asked in sign what I wanted to drink in front of the waitress, and then told her I wanted water.

We spent the rest of our lunch happily signing away with the waitress coming by to ask if everything was OK a couple times and Kate assuring her we were fine. When it came time to leave, I mentioned to Kate in sign that I needed a box because I couldn't finish. Kate couldn't finish either. She eats like a bird. She probably had twice as much food left on her plate as me. In two HUGE heaping mounds. She waved the waitress over and asked orally for boxes for our food.

The waitress was so kind. She came back promptly with two boxes in hand and smiled benevolently at me first. Then she began dishing up my leftovers into the box. I felt just a little foolish. I am capable of placing my own leftovers into a box. But when I made a move to take the spoon, she pushed my hand away and smiled again. Maybe this was how they did it here at this Thai restaurant, I thought. Such GREAT service!! So I allowed her to spoon up the leftovers, and watched as she gently closed the lid, placed the box into a plastic bag, then tightly knotted it twice for safekeeping. Meanwhile Kate sat there, with her box and heaping plateful of food, waiting for the same special service--- that never came. As soon as the waitress finished with my box, she turned on her heel and left. The look on Kate's face was priceless. There she sat with two humongous mounds of food left on her plate and an empty box. No special treatment for her.

I guess the waitress decided Kate was capable of dishing up her own food. After all, Kate could speak. You have to wonder what they think sometimes-- Hearing people. That you need a voice in order to dish up food? I don't get it. But that's when it hit home how different the world is for culturally Deaf people.


We haven't been back to the Thai place, even though the food was good.

Yeah-- I get it.

Dealing With IT-- Part 2

I covered humor and standing tall, but I failed to mention WHY you need to stand tall when you are d/Deaf. There are times-- and we all know it happens very occasionally-- but it happens to all of us that people are rude for some reason. You might call them audists. I simply call them a**holes. These are the people who make discourteous remarks about your deafness, as if they think you purposely developed d/Deafness solely to annoy them. We've all been there from time to time.

Or perhaps you are NOT a d/Deaf person. Maybe you struggle with some other issue. Maybe you are Gay and other people feel awkward about that for some unknown reason. Or maybe you're a vegetarian, or a Wiccan just minding your own business. Some people can't handle others who do things differently, so they say mean things. They feel threatened that you live your life another way. Or maybe you are a deaf person who prefers to speak, and other Deaf people can't stand it that you like to use your voice. Or maybe you are a Deaf person who prefers NOT to speak, and other deaf people can't understand WHY you won't talk. Why can't people just let everyone else live their lives in peace?

The problem for many of us is we didn't grow up "different." Everyone knew where our boundaries were, so we never had to assert them before. When you develop a difference such as a disability, (or even change religions or discover you are Gay) it's a new thing to have to assert your boundaries, and it may be uncomfortable for those of us who dislike conflict. Other people assume things about us based on what they've read about others in our minority group or movies they've seen. They stereotype us because they may be afraid to ask personal questions. This is why I suggested the humor earlier, to help others feel comfortable with your situation. It helps them see you're open about it. Some people just can't accept differences though.

Ever since I became a vegetarian a cousin teases me about how carrots "scream when
they're ripped out of the ground." Then she mimics them screaming in pain while I'm trying to eat my dinner. Of course the other meat-eaters laugh hysterically. It's especially annoying to me since I never tell omnivores what I find so repulsive about cattle and chicken farming. Whenever anyone asks, I tell them they don't want to know. I figure anyone who really wants to know can google it themselves.

Whatever it is that's "different" about you, the reason you need to stand tall is so when someone becomes an a**hole about it, you can adopt your FU look. I'm speaking personally about being d/Deaf or vegetarian, but I think this should work for Gays or Wiccans or Buddhists or people who have toenail fungus even -- whoever gets picked on. You'll need to perfect this look in the mirror until you have it just right. My late-deafened friend Jan mentioned it. She has it down pat.

You already have your shoulders straight. You've been smiling and cracking jokes. Jokes are a great ice-breaker and they show you have a sense of humor and that you're an open person. After the a**hole makes his/her remark, you will need to lift your eyebrows in shock, then give the a**hole the beady eye. (Look at the kitty.) Purse your lips and flare your nostrils as if you smell something putrid at the same time. You've been waiting for this moment, so you've practiced the look. It's also nice to have a couple of sarcastic come-backs up your sleeve, but the look should be enough. Since it's a stare down, you will not look away first. At some point, the a**hole will ask, "What you lookin at?"

This is when I might ask my cousin if she's done with her carrot act. Perhaps she'd like to be a turnip next? If the issue is your deafness, sometimes a simple statement such as, "I'm deaf. Deal with it," is enough. Trust me, they won't mess with you again.

There is no shame in disability or being different. When you stand tall, you force people to respect your boundaries. They sense your confidence. You don't have to take crap off anyone.

Pajama Epiphany

I had an epiphany last night while sleeping. I must be kind of dim because for days I've been wondering what "deficit thinking" REALLY means. It seems I've read at least twenty-five different definitions by now and I wasn't getting it.

Earlier in the evening I had my Kundalini meditation session with Subhan-- which was was wild, but enlightening. Subhan says it all comes together when you reach three points: 1) self-awareness 2) self-acceptance and 3) relaxation.

I don't know about others, but I have the most problem with number two. I'm old enough to be aware of my strengths and weaknesses, and I can relax, but dang-- I still have such a hard time accepting my faults. In fact sometimes I even dwell on them, which can lead to self loathing.

Most the time I do not mind deafness. When I'm alone or with other deaf/HH people, it's no problem at all. But all those awkward times, like today when a lady, cursed, sighed, rolled her eyes and yelled at me because she had to repeat a question--that kind of event gets buried, then comes back as a headache, or keeps me awake at night. It hurts. It's not my fault.

On the one hand the reasonable side of me knows that woman had a problem. On the other hand, because I was working, I had to smile and remain calm and be nice to her. I would have liked to ask her if she thought I purposely developed a hearing loss specifically to annoy her at the library. I mean-- my God if she thinks SHE has it rough having to repeat three times, how does she think I feel having to ask for repeats?!?!?!?

So self-acceptance can be a hard one. Last night I worked on that while meditating and I guess it must have been rolling around in my mind while I was sleeping because suddenly I woke up in the middle of the night with the answer.

Deficit thinking is when you don't accept yourself as a deaf or Deaf person. (I'm applying this to d/Deafness, but I think it can apply to anyone.) It's when you don't accept yourself. When you don't fully accept yourself, and I mean LOVE yourself because that's what self-acceptance is, then you cannot accept others for who THEY are. In order to fully love others, you must accept yourself with all your own flaws, so you can look past other people's flaws.

In order to accept others, to be open to new ideas, technology, culturally different people, we must first become comfortable with who WE are. I hope we can all help each other become comfortable.

(top photo from flickr chicagokristi, side photo-petersblog.org/images/self-love.jpg)

That Doggone Sound

In the book This Is Your Brain On Music, author Daniel J. Levitin brought up an intriguing philosophical line of thought. He said the flavor vanilla doesn't exist in a bowl of pudding until your tongue touches it.

Then he went on to elaborate about light. Darkness doesn't exist. It's simply the absence of light, which only exists when we perceive it with our eyes.

Finally he got around to sound. It only exists when we hear it. Dogs and whales hear things we don't hear. We hear things other animals don't hear. Sound waves can't be seen or touched. They're invisible. Sound simply wouldn't exist for us at all if we had no mechanism to perceive it.

You see where I'm going with this. Sound is defined only by what we hear. Definitions are agreed upon by most humans. Normal hearing is defined by what the majority of humans hear, not what dogs or whales hear. Humans are deaf to sounds dogs and whales hear. However, those sounds still exist for a dog or whale. If deafness were defined by dogs, humans would be considered deaf. Does this not mean all humans are "deaf" to some degree?

What is a disability? It's all relative.

Later, Levitin explained it is not only what we hear but how we process what we hear that impacts our hearing perception, as well. Not all of us process what we hear the same way. What I hear is different from what other humans hear, and how I process it is different depending on the experiences I associate with certain sounds, and my genetic make-up and a lot of other technical biological considerations. This is why different people prefer different kinds of music, different voices, different rhythms, and so on.

The book is a fascinating, but highly technical look at how the brain processes sound and gave me lots to think about.

She did it again

Yesterday a deaf friend friend came over to pick up my son's waterbed because he's moving away in less than two weeks. We made deal--my son and I. When he moves out the waterbed goes. He isn't sad about it. He hasn't been sleeping in it all summer. Somewhere he read that waterbeds stunt your growth. An inch shy of six feet, maybe he's anxious to grow a couple more centimeters, I don't know. Eighteen-year-olds aren't big on communication. He's been trading off sleeping on the futon in the den and the family room sofa all summer. I have mentioned my friend (I'll call her Meg) in another blog-- "My Friend's Hands"

She drove a borrowed truck over, then we deconstructed the bed for her, so she could see how it would go back together. My husband drew pictures on the inside of boards to identify each piece and its relative position on the bed. I know she won't have any trouble. One thing about people born deaf is they seem to have a super spatial IQ. Those I've met-- admittedly I have personally met maybe only 30?-- are natural artists, engineers and tinkerers. Meg has a degree in computer science. Stupid she is not.

So during the deconstructing, panting, dusting, sneezing, moving, sweating, more panting, labeling, packing in the truck process-- my son mumbled he had lost his keys. "Mmmmpf had them, and felt bad about mmmpf, grmmfpt, mmmfpt. He had mmpfg, grmmmfp mmmmmfg, but couldnt mmmfg, mmmmmfg. . . .

"What?" I asked.

He yelled his story over again, but he wasn't in a position for me to see his mouth. I'm not sure I've mentioned my husband has also lost some hearing loss due to Menieres. So they began yelling back and forth, to the point even a DEAF person could hear them.

Oh WAIT! I AM DEAF, and I couldn't understand a word they were saying. But I'm sure the entire neighborhood heard them. With my hearing, because I hear low tones, I am aware of volume. The problem is speech doesn't make any sense, because my speech frequencies are all but gone.

"What? I asked again.

Luckily Meg was there, and she waved my attention. This is how deaf people do it instead of shouting. Yelling and shouting is an idiotic way of getting some one's attention when they can't hear. Think about it. Then she started signing a few words here and there to fill in the blanks for me.

Ah--I got it! He didn't have a spare key to his trunk. He would have to go to a locksmith and it would cost a lot of money to have a mold made for a trunk key. He can't get his trunk open at all because the inside latch is broken. (God knows what's inside the trunk-- I hope no rotting food.) His friend is sorry for losing the key. . .

We had lunch together, then she emailed when she got home with the bed. It would be nice to have another deaf person in the house, I was thinking. Two lip-readers are better than one, and we could sign to each other all the time. Or maybe I just need a live in interpreter so I can communicate with my family, since they can't/won't/forget to sign?

I have big plans for this empty room.

Notes about the painting above--

Born in Basaluzzo (Alessandria) in 1950, she studied in Rome at the "Accademia delle Belle Arti" (arts academy), where she followed post-diploma courses in set design. Currently, she is an Art Education instructor at a middle school in Rome.
She collaborates, as a set designer, with the deaf theater group "Laboratorio Zero" and with another theater company, "A. Bottazzi" in Basaluzzo.
In addition, she does graphic art work in the field of advertising, humorous drawings about the deaf world, and murals.
She has had a one-man show in Basaluzzo in 1983, and has participated in numerous regional and national group shows, receiving prizes and recognition.

Silence
This painting was inspired by a meeting with a deaf American poet, Clayton Valli, in Rome. It was used as the cover for a videotape containing Valli's poems.
The subtitle that the artist has selected conveys a clear message: "The silent language of the hands, in the harmony of Mother Nature."
Inspired by the creative expression in Valli's signed poems, Zuccotti's work vividly depicts a "creativity" concept that is neither noise nor sound, but is peace, fertile silence, nature that speaks, and hands that communicate.

http://tinyurl.com/2y94cz

Juliette Gordon Low (Miss Daisy)

Today is deaf hero day!! I have chosen Juliette Gordon Low as one of my favorite of all time deaf/ hard-of-hearing people. As a former Girl Scout leader, I know her bio well. She was born in Savannah, Georgia in 1860. An early feminist, she shunned boring needlework for sports. At that time southern belles were not permitted to run or exert themselves. One time when she was a teenager, she gathered a group of girls in a men's gym, locked the doors, then had them all strip to their bloomers, so they could play basketball in secret.



As a young adult she suffered chronic ear infections that made her deaf in one ear after a doctor poured a nitrate solution into her ear canal to heal the infection. Instead, it burned out her eardrum. When she was married in 1886, a piece of rice lodged in the other ear, became infected, then pierced her eardrum, and deafened her on that side too.



Later in life she befriended Lord Baden-Powell in England and his sister Agnes, who developed Boy Scouts and Girl Guides. Juliette liked the idea so much that she started Girl Scouting in America. To read more about Juliette Gordon Low, go to this link--


http://www.girlscouts.org/who_we_are/history/low_biography/ Today Girl Scouting places an emphasis on diversity awareness, tolerance, and equal opportunity, no doubt because of the early influence of their deaf founder. Juliette Gordon Low was an inspiration to woman and to late-deafened people.

The Flying Dutchman--OH What a MAN!

I went to see The Flying Dutchman on Sunday. I know some of you might be wondering why
I would be interested in the opera since I cannot hear worth a darn. I must first elucidate a bit about hearing.

Sound is made up of two components-- volume and pitch. (In truth, it's way more complicated than this, but we won't go there today-- if ever.) Volume, as you know, relates to the loudness. Pitch has something to do with the frequency of sound vibrations. We hear pitch as sound
differentiation-- the difference between a piccolo and a tuba, for example. If you think about a piano, there are keys that make high pitched sounds and keys that make low pitched sounds. If you strike a piano key hard, this will make the volume of that key louder than if you strike it softly. A very high-pitched key can be struck hard to create a loud high-pitched sound. In life, some loud high pitched sounds might be sirens, fire alarms and telephones. High-pitched does
not always mean quiet. Sometimes people have a hard time understanding this, and assume all high-pitched sounds are quiet.

Low pitched sounds can be very quiet. A lawnmower makes a low-pitched sound, and is loud when you are right next to it. But if the lawnmower is mowing on the next block it could be a quiet low-pitched sound. A school bus is low-pitched and is very loud if you're right next to it, but three blocks away it's much quieter, yet it is still low-pitched.

You might be wondering why I'm explaining all this. It's critical to understand, because people who have hearing loss do not often hear all sounds equally. A person with normal hearing will have a flat horizontal line running along the top of their audiogram somewhere between 10-20 dbs. Others can be profoundly deaf in some frequencies (pitches), moderately deaf in other frequencies and have perfect hearing in still other frequencies. In fact this is quite common.

My hearing is near perfect in the low tones (pitches), but I'm deaf to high tones. So what does this means in terms of the opera? It means I can hear most everything below middle-C pretty well with my hearing aids.

I heard Greer Grimsley's base-baritone voice just fine, and OH! He was SO fine! I'll take him over Johnny Depp any day. Unfortunately for me Jay Hunter Morris' voice was drowned out by the orchestra. He was the tenor who played Erik, Stenta's jilted boyfriend.

I was curious how the others perceived his voice so asked the couple we went out with about
this. They have perfect hearing. (My husband, like me, is losing his hearing, which is why I didn't ask his opinion.) The other couple felt Morris' volume was just as loud as Grimsley's. This was how I knew the problem was with my hearing, not Morris' performance.

I always keep my opinions about the music and performances to myself for this very reason, because I can't trust my ears. Still I was not disappointed in the production. I hear horns, but not piccolos; drums, but not violins. Wagner is heavy on horns and drums, so this opera was much more musically enjoyable than usual for me, even though Erik's (Morris') voice was drowned out. Grimsley and what I heard of the orchestra was fantastic! Also there were some good chorale parts. Again I picked up on the baritone harmony. Our friends mentioned the chorus of women in the workshop. Lost on me.

One really nice thing about opera is the sets and costuming are so very creative, colorful, and visually stimulating. I love to watch the way sets change and to note any small symbolic details. I am fascinated by the way simple tricks of lighting or props can suggest changes in space and time. The stage challenges my imagination in ways film can't.

Finally, my hometown opera offers subtitles, so I don't miss a bit of the story line. Since I can't go to plays (they do not usually offer subtitles), this is one great way for me to enjoy the arts! And I love it!

Afterwards we all went to dinner at a Thai place. I made everyone shift seats until there was no glare behind any heads or shadows running across lips. Then I ordered a tofu dish with only one star because my delicate constitution couldn't handle any more heat after Grimsley's blazing performance. Oh my!

Poetry-You Have To Be Deaf To Understand

Today's post is about deaf art and audism. The picture above, painted by Susan Dupor, is titled "Family Dog". The girl on the ground represents how she feels like the family dog when her family fails to consider her communication needs. I love the way her face looks so dog like. A large social gathering is a nightmare for most deaf people, with several conversations going on at once and people excitedly talking above one another, no one using ASL. The blur of faces depicts the difficulties in following along. Even if she could lip read, watching so many faces at once would be impossible. Everyone seems to be ignoring her. Communicating with her is too much work, so they don't bother. I have felt just like this many times. I'm there, but not interacting with anyone. Jokes are told, stories shared, and I'm not hearing any of it. I've been trying to convince my family to take ASL, but its' hard to get them to face the facts about my hearing loss, since they knew me way back when, and my speech is still good. Also I happen to be pretty good at lipreading one on one.

"But you do so well with your lip-reading," they say.

"Do I?" (or is it that you don't want to be bothered with ASL?) My last audiogram indicated I was hearing less than 12% of what was being said with amplification on random word testing. When I go for the cochlear implant evaluation, we'll see how well I do with contextual clues.

Below is a poem called "You Have To Be Deaf To Understand" I only had mild hearing loss as a child. Some of this rings true for me now. I love this poem.


What is it like to "hear" a hand?
You have to be deaf to understand.

What is it like to be a small child,
In a school, in a room void of sound-
With a teacher who talks and talks and talks;
And then when she does come around to you,
She expects you to know what she's said?
You have to be deaf to understand.

Or the teacher thinks that to make you smart,
You must first learn how to talk with your voice;
So mumbo-jumbo with hands on your face
For hours and hours without patience or end,
Until out comes a faint resembling sound?
You have to be deaf to understand.

What is it like to be curious,
To thirst for knowledge you can call your own,
With an inner desire that's set on fire-
And you ask a brother, sister, or friend
Who looks in answer and says, "Never mind"?
You have to be deaf to understand.

What it is like in a corner to stand,
Though there's nothing you've done really wrong,
Other than try to make use of your hands
To a silent peer to communicate
A thought that comes to your mind all at once?
You have to be deaf to understand.

What is it like to be shouted at
When one thinks that will help you to hear;
Or misunderstand the words of a friend
Who is trying to make a joke clear,
And you don't get the point because he's failed?
You have to be deaf to understand.

What is it like to be laughed in the face
When you try to repeat what is said;
Just to make sure that you've understood,
And you find that the words were misread-
And you want to cry out, "Please help me, friend"?
You have to be deaf to understand.

What is it like to have to depend
Upon one who can hear to phone a friend;
Or place a call to a business firm
And be forced to share what's personal, and,
Then find that your message wasn't made clear?
You have to be deaf to understand.

What is it like to be deaf and alone
In the company of those who can hear-
And you only guess as you go along,
For no one's there with a helping hand,
As you try to keep up with words and song?
You have to be deaf to understand.

What is it like on the road of life
To meet with a stranger who opens his mouth-
And speaks out a line at a rapid pace;
And you can't understand the look in his face
Because it is new and you're lost in the race?
You have to be deaf to understand.

What is it like to comprehend
Some nimble fingers that paint the scene,
And make you smile and feel serene
With the "spoken word" of the moving hand
that makes you part of the world at large?
You have to be deaf to understand.

What is it like to "hear" a hand?
Yes, you have to be deaf to understand.

"You Have to be Deaf to Understand" was written by Willard J. Madsen, associate professor at Gallaudet College and a graduate of the Kansas School for the Deaf.

My Friend's Hands

Yesterday a deaf friend came over to check out my son's waterbed that we're planning to drain and dispose of since he's moving into a college dorm soon (whoopee!). I haven't been practicing ASL enough, and I'd forgotten how wonderful it is to have someone sign a word when you need a repeat, instead of asking them to say it over and over and over again. Even though we talked orally, we automatically signed most the time too. That was so nice for me because I'm not fluent enough to depend totally on ASL, though I could communicate with her in ASL for a couple hours without speaking last spring. I'm just SO out of practice now!! I don't hear well enough to depend on my ears anymore either. I CAN of course, because I have to, since my family and most of my friends are hearing, but lipreading (speechreading) is so much work. What a relief to be around someone who signs! I guess that's the problem with being late-deafened. If I had been born deaf I would be more proficient in ASL, and have more deaf friends, but I wasn't. After awhile I even took out my hearing aids, which I hate wearing.

It was also really nice connecting with her because I haven't seen her for a long time, and I've missed her. I haven't seen any other deaf people in awhile either. I showed her the results of my new audiogram. She's one of the few people I know who can look at it and actually understand what it means. Our audiograms are almost alike, but now that mine has taken another dive she says she thinks my hearing is worse. She was born with her hearing loss, so her hearing is more stable than mine.

We discussed cochlear implants, a local deaf club's new webpage, and another local club's picnic. We thought it would be nice to have a get-together with all the deaf/late-deaf people we know in the area, and talked about deaf people we had not seen in awhile who we would like to see again. . .and so on. Then, she looked at my video phone because it wasn't working and promised to send an email with the name of someone who could troubleshoot it. I had recently been to the DVR and she had just made an appointment to go there. We discussed what they offer to people with hearing loss, the ADA laws, how to get accommodations at work, etc. These are the kinds of things I don't/can't talk to hearing people about, and I crave this. I think I've mentioned before the support I get from my deaf friends is my lifeline, not that I love hearing friends less. A couple have even offered to take ASL with me, which made me tear up a little.

I've made a mental note to prioritize registering for ASL classes at the nearby community college this fall, so I can stay more involved. (I have taken three basic ASL immersion classes from the Hearing, Speech and Deafness Cntr.) Between that and the belly dancing I'll be gone three nights a week. But I feel it's imperative to stay in touch with deaf friends, which I can't do if I can't communicate with them.

Fussy Friend

I'm fussy. Yesterday I went to lunch with an old friend, meaning someone I've known a long time. She's no older than me really.

First off, I had to ask if she would mind driving because I have this tendency to lip read and drive at the same time. Since most people like their driver to watch the road, she immediately agreed to the "You drive." arrangement. Most of my friends are used to this, but sometimes I have to remind them.

When we got into her car, she asked, "Where's your thingy?"

She was referring to my pocket-talker, which has a little microphone she's supposed to wear while driving. This is a wonderful device that brings the sounds of speech directly into my hearing aids while muffling all other unwanted noise. The clamor of the road is usually a big problem for me without it, but I haven't used my pocket-talker for awhile, since my hearing took another dive last winter. So it's in my closet with dead batteries. I didn't want to explain all that. I just told her the batteries went dead and I'll go without.

"Sure?" she asks, "I'll wait for you to change them if you want."

"Yeah, I'm fine-- REALLY."

Then there was the question of where to eat. "YOU decide," she says, " I don't know which places are quiet enough."

I can't hear in noisy restaurants. There was also the challenge of my being vegetarian hanging in the air, though that hardly compared to the complication of finding a quiet place at noon. I suggested an Indian joint, remembering it seemed peaceful the last several times I had been, though when we got there I was shocked by the clattering of dishes and din of babbling patrons. Then I realized my error. The past few times I had gone there with a deaf friend. We had taken out our hearing aids and signed the entire time.

As we were escorted to our table, my friend asked, "Is this spot OK for you? Where do you want to sit? Booth or chair?"

Scanning around, I chose the chair since it faced away from most of the other restaurant patrons, no shadows would be crossing my friend's face, or blinding lights behind her head-- all good. When you can't hear, seating arrangement can be a vital consideration, especially if you're going to be relying on lip reading to a large extent. Normally I would choose the booth because sound tends to bounce off, but the booths here were short. No good for bouncing sound around the ears. Then I switched on my directional mic. program in my hearing aids to cut out all the clatter behind me. Worked marginally OK. My friend was yelling anyway, and she couldn't hear well either.

Before we left I mentioned I had to use the restroom and didn't want to use the one in the restaurant. "What's wrong with the one here?" she asked as we got up to leave. I don't like it because it's one of those small broom closet types that isn't well-maintained and you have to walk by the kitchen staff so they all know where you're going. It just bothers me--has nothing to do with my hearing.

I have been thinking about my friends and what they put up with being a friend to me. I do not go to parties unless they're required--funerals and weddings mostly. And OK-- let's be honest-- a funeral doesn't count as a party. I would forgo most wedding receptions if I could. It's so hard to hear in large social gatherings. I hate them. I cannot go to a movie unless they're captioned, so I'm not the kind of friend you can call up at the last minute and say, "Let's go see the third Bourne Identity movie tonight!" If we go out to eat, I pick where, I decide where to sit, and YOU drive. People who don't like driving all the time, who like to party and go to movies, or who like to have some control over restaurant decisions tire of me quickly. I guess my peculiarities pretty much exclude MOST people because I don't have a lot of close hearing friends. I can count them on one hand. I imagine others crossing me off their lists while exclaiming, I just hate driving her everywhere!

Other than my late-deafened friends who all have the same issues as me, I count my few hearing friends among the most compassionate, patient people I know. Most-- not ALL-- have endured some sort of tremendous pain, strain or loss at some point. Some fall into niche groups set apart from the norm-- a lesbian with MS, a mother of a schizophrenic adult child, a Buddhist two-time cancer survivor .

I value the fact they are SO incredibly accommodating. Thinking about the battles they've endured, I have wondered if the reason they tolerate me is because of their own experiences of intolerance? Let me put it this way-- we've all been stared at, coped with public discomfort because of our differences, and withstood rude comments from ignorant people. I am personally aware of growing more broad-minded and forgiving because of my 'deaf' experiences over the years, so it has occurred to me that maybe they also feel a softening or more tolerance towards others, if only because they know what it's like to be "different" or labeled, or be pidgeon-holed.

Then, too, is the fact that when someone demonstrates acceptance and kindness towards you, it's much easier to abide their differences whether they are Lesbian, Wicca, reformed alcoholic, deaf, or Buddhist. . .

I have nothing against Christians, I AM one. I went to church regularly until I could no longer hear. I used to teach Sunday school and was heavily involved with my church, but I never felt the kind of merciful compassion or outreach from any of the Christians there that I've received from these others; not even from ministers. Thinking it might have been that particular church, I tried several other churches that didn't work out either. I have to wonder about this. I have a few friends involved with deaf churches or who have found strength through their church families, so I'm not anti-Christian, I'm only saying the support wasn't there for me. When I see intolerant Christians railing against people like some of my friends, it makes my blood boil now, though I also recognize not all Christians are like that. Just a few bad apples.

The friend I went to lunch with yesterday, she's simply a nice person-- not in any niche group. That makes me wonder too. How did she become so non-judgemental, so accommodating, so tolerant of differences and my brand of fussiness? I wish I knew.

Whatever the case sometimes I feel lucky to have the hearing loss, because of the kinds of friends it has helped me find.

Journey Into Deafness

I was probably no older than three the first time I saw someone wearing hearing aids. It was, for some reason, one of those unexplained lucid moments I remember so clearly as if it happened just recently. Even now the details are so clear I can see the colors of the walls, faces, the checker's hands ringing up items. It seems as if I was supposed to remember.

I was sitting in a shopping cart at the A&P. Mama and I had pulled up at a check-out station behind another woman and her son. I watched the checker for awhile, mama licking her stamp book, then noticed the little boy standing ahead of us quietly. He was wearing some sort of contraption with big black things over his ears. I had seen something like this in the winter--ear muffs. But it was summer and these ear things were not knitted ear muffs. They were made of metal and rubber, and had electrical wiring. I asked mama, maybe in too loud of a voice, what those things were on that boy's ears. I could tell at once I had embarrassed her. She shushed me, then explained quietly he could not hear well, so he had to wear something called hearing aids. Then she smiled apologetically to the other mother.

Right then a feeling came over me that I would someday be just like that boy. So I told my mama. She laughed and said, "No, your hearing is just fine. You will never have to wear hearing aids like him." Though I knew as she said this she was wrong, I kept it to myself. I wanted to believe her.

I think this was my first ever premonition. I've had a few others since. Always I remember them in sharp detail, just like I remember this one so vividly. It wasn't long after that I came down with the measles, though my hearing loss wasn't immediately noticeable. In fact it wasn't even diagnosed until decades later. However, the official word is the measles did my hearing in. Who knows? I could have contracted it right off that shopping cart-- or maybe not. The sickness and what came after is much more muddled in my memory.

I am not exactly sure when I first noticed the hearing loss. When you are young, you often assume others are exactly like you. Looking back I realize I had lots of problems. Ear pressure caused tremendous pain while swimming under water, or driving over mountain passes. I always had tinnitus (ringing in the ears) off and on. None of the schools I went to performed routine hearing screenings. As a teenager, I began to notice a plugged ear feeling and the tinnitus increased.

At nineteen the tinnitus got so bad I decided to see a doctor, and that was when my hearing loss was first discovered. At that time my audiogram made a cookie bite pattern in the speech ranges. My doctor suggested the hearing loss might be "allergy related." I swear most every incurable ailment was blamed on allergies back in the 70s. I pursued allergy treatments for awhile. When it became clear they didn't work, and my hearing continued to decline, I gave up. My hearing has continued to decline into what is known as a "ski-slope" loss--profound in the speech tones-- though my low frequencies are still good.

Everyone wore surgical masks in the dental office where I worked when I was in my early twenties. So I switched to a desk job, which was easier than admitting I couldn't understand people with their lips covered. Then I realized I couldn't hear on the phone well. Years went by before I conceded that I needed to do something. By this time I had a small baby, and avoided most social situations because of the hearing difficulties. I couldn't hear movies. TV Captioning hadn't been invented yet, and phone communication had become next to impossible.

Buying my first pair of hearing aids in my twenties was bittersweet. At last I could hear-- somewhat. Hearing aids are ONLY aids, they are not like glasses in that they do not provide a perfect correction. There is still a lot of distortion, missing sound and amplified sound where you do not need it. Hearing aids are more comparable to prosthetic limbs than glasses. Still, I was most amazed by my baby son's sweet cooing voice. I was hearing sounds I had never heard. That was miraculous!

Then my audiologist handed me a maintenance pamphlet with illustrations of gray-haired, seventy-year-old grandparents on the front, and I feel apart. We all know the stereotype of hearing loss as an "old person's" complaint, but until that point I tried to keep an open mind. Of course, I reasoned, if I had hearing loss, then lots of other young people must have hearing loss too. So I guess I expected more age diversity on the pamphlet. How naive of me! When I saw everyone on the front cover of that pamphlet portrayed in deep wrinkles and gray hair, that's when I realized what an anomaly I was. I cried all the way home. I didn't know one person with hearing aids. I didn't even know any people my parents age with hearing aids.

Emotionally I started crumbling and continued to crumble for the next fifteen years or so. On the outside I managed, I think, but inside I grieved. I didn't know where to turn and there wasn't much support. I felt so isolated. While my friends talked about breast-feeding, childbirth, home decorating and new jobs, I needed someone to talk with about audiologists, ear mold discomfort, parenting with hearing loss, new hearing aid technology, on the job accommodations, and a whole host of other concerns I had about my future with an incurable idiopathic progressive hearing loss. This was, after all, the early 80s. Digital hearing aids had not been invented yet. No one had even heard of cochlear implants. The Hearing Loss Association of America (HLA--formerly SHHH) was in its infancy, and full of retired grandparents who weren't parenting or working. The local chapter was far away and they usually held their meetings at inconvenient times for young people. I didn't fit in. The American Disabilities Act didn't exist yet.

To make matters worse, my hearing was declining at a rapid rate and no one knew why or how to stop it, or how bad it was going to get. Was I going to be deaf by age fifty? No one knew. Just as an example to show how out of touch most professionals were and still are, the first time I went to a psychologist to talk about the support I needed, she suggested I get a job. I look back on this and shake my head. I was grieving. I needed accommodations in order to get a job. I needed a LOT of support. The last thing I needed was someone shrugging her shoulders and telling me to go back to work.

This isn't the first time a doctor has overlooked my hearing loss. Even recently my family doctor, who has been informed numerous times, failed to recognize the impact it might have on other health issues. Just the daily stress of speech reading constantly, and filling in the blanks, guessing, and not being able to communicate effectively with 90% of the population every day, all day long---it's the little things that add up to a huge stress factor. True, she doesn't have a copy of my audiogram. I've made a note to have it sent to her, because every time I go there I have to remind the office staff I'm deaf.

Anyway it has been more than twenty years since that first ineffective series of visits to the psychologist who suggested I "get a job." I would like to take that young woman (me) by the hand to guide her through this awful mess. I wish I could go back in time and tell her it's all going to be OK. Technology is going to get better, she will discover ways to communicate on the phone and without a phone. Computers will be invented and deaf people will "talk" via videophones, email, IM, and phones with words running across a screen. TVs will all be captioned and even some movie theaters will offer it too. There will be laws that employers must accommodate us, and she will eventually get a job with accommodations that suits her. HLA will thrive and become powerful and many young people will get involved. Other support groups will pop up--the Assoc of Late-Deafened Adults (ALDA) and tons of on-line support groups. Some people still don't know where to turn. So I'm advocating. I can't go back in time, but it does me good to help others.

My deaf adventure is the main point of this blog, but since deafness doesn't define me or anyone, there will be lots of other posts in here as well-- just on life--through my eyes-- because blogging is my therapy. If you are losing your hearing or you know someone who is and you find anything in here helpful, then that's GREAT!