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.

Thank you Mishka

I realize your recent blogging has been to examine implants for children, but it has influenced my decision not to go through with an experimental cochlear surgery.

As many of you know, I went for a cochlear implant evaluation last November. Though I don’t hear speech well, I don’t qualify for a regular implant because I have good low tone frequencies. There’s a new, less invasive type of implant in trials called a hybrid, which only has a ten-inch long electrode instead of twenty-four. Because of the shorter electrode, the cochlea remains relatively in tact and residual hearing supposedly isn’t lost.

For those unfamiliar with this new technology, here’s an article explaining in more detail what it can mean to someone like me with good low tone frequencies.
http://www.hearingresearch.org/Dr.Ross/Implants.htm I’ve pasted a couple of relevant paragraphs here.

"Ski-slope" hearing losses are a common occurrence in our clinics, and they always present a hearing aid fitting challenge. Because the person may have relatively good low frequency hearing, it is necessary to ensure that over-amplification of the low frequencies does not occur. Because the hearing thresholds in the higher frequencies are so poor, it is difficult for a hearing aid to provide aided audibility without producing unacceptable distortion or discomfort. Furthermore, as some recent research has revealed, the cochlea hair cells that respond to the high frequencies may actually be missing (cochlea "dead spots"). Amplifying these areas may be more than useless; it may actually be counter productive. While some of these people may obtain some help from a hearing aid (at the lower and middle frequencies) significant hearing problems almost always remain.

Traditional cochlear implants have rarely been considered an option for people who fall in this category. Almost always, the insertion of a long electrode into the cochlea results in the destruction of the surviving hair cells. Perhaps some people who elect this route would wind up better off, even with the loss of their low frequency residual hearing, but then again perhaps not. It is not a chance that many people are willing to take.

I should add that testing phase two for this hybrid closed last fall in the US, and we’re currently waiting on the FDA to approve testing phase three, which may happen sometime this spring if all goes well. I met criteria for phases one and two. Because the FDA hasn’t yet approved test three, I was told there was no guarantee that I would qualify for phase three. The FDA had the prerogative to change test guidelines. However, at this point there is no reason to believe they would change criteria, so I am on a wait list.

I had some initial qualms when I learned I met the criteria. First of all, a small part of the approval process was based on whether one benefits from hearing aids. My hearing aids are nearly eight years old. Though my aids were state-of-the-art when I bought them, the audiologist who administered my test suggested I might be happier with new hearing aids because several advances have been made in the past decade.

Nevertheless, the audiological evaluation took two hours and was more thorough than many I’ve been through, however not the MOST thorough I’ve sat through. I’m not sure how to put this. I picked up on some vibes from the audiologist. I really didn’t think she wanted to add me to the wait list, but the surgeon was more than happy to. I might be wrong about that. I’m an intuitive person and wanted to talk to her some more, but there wasn‘t time. I have since found out that audiologist has left. Maybe I‘m reading more into this than I should. I don‘t know what to think.
Next, I had a consult with the surgeon who performs the experimental surgery. When I asked about risk the of the hybrid, he glossed over the usual risks of surgery, discussed risks of implant surgery, and finally got down to statistics on the hybrid. Fifteen percent lose their low tone residual hearing in the first year. Considering the whole point of this technology is to PRESERVE low tone hearing, I thought that was a rather HIGH rate of failure. Then he went on to say about five percent end up with WORSE hearing than they started with. I asked about newer hearing aids, and he said I would hear much better with the implant-- if it worked. No guarantees of course.

As we left I told my husband I wasn’t sure I wanted to go through with it. He agreed, though tried to remain upbeat. I had a few months to decide, he assured. Later I said the same thing to my dad. His reaction was immediate relief. I didn’t realize how much he had been stressing over the possibility of experimental surgery.

Still. . . I wasn’t sure I was making the right choice. I want to hear. My work is suffering because I deal with the public on a daily basis and I rely on lip-reading with my hearing aids. I hate my hearing aids. They‘re uncomfortable and I have a lot of sound distortion. My hearing is still declining. Anyone with an ongoing hearing loss understands the constant struggle. You’re always adjusting to new lows and readjusting. There’s fluctuation. Tinnitus comes and goes whenever you have a major drop, which also comes and goes. An implant would mean stable hearing on at least one side.

I want to say in NO WAY do I wish to sound as if I'm judging others for their decisions to get a cochlear implant. We're all different with different needs, different bodies, different life experiences. I'm looking at EXPERIMENTAL technology here. If you're a parent of a Deaf child, I can't judge you. I haven't walked in your shoes. My children are hearing. Because of my own deafness, I believe I would have enjoyed raising a Deaf child. Would I wish progressive hearing loss on any of my own children? NO!

For the past several years I’ve been treated by my family doctor, an ENT and a neurologist for excruciating migraines and sinus headaches. While several friends and relatives have suggested maybe the migraines are caused by stress of hearing loss, my neurologist believes the migraines are not psychological. That's OLD science, he says. Most migraines are caused by biological swelling within within the brain. In my case, they are possibly related to sinuses and allergy or an old neck injury.

After reading Mishka’s articles, I realize getting an experimental implant surgery would be adding more fuel to the headache fire. More than a few implantees admitted to Mishka that headache problems resulted from faulty mappings. I’ve seen examples of this first hand myself-- people I know with implants holding their heads in wincing pain. One person I know has had horrible electrical pain running down one side of her face from a faulty electrode. Another I know has been living with cochlear failure for months. I've heard horror stories of testing that rivaled childbirth.

The thing is-- if you read the article it all sounds pretty rosy, doesn’t it?
Then yesterday I went to see my sinus ENT for the first time in several months. Glancing over my chart, he saw the report from my visit to the Cochlear research center last November.

“What’s this all about?” he asked.

.
“Experimental Hybrid Cochlear Implant.” I said.

“EXPERIMENTAL? BE CAREFUL WITH THAT.” he warned.

"I'm not doing it." I told him. It wasn't until that moment I realized I had made up my mind.

I’ve always believed in fate and messages from angels. Someone’s trying to tell me something. Thanks Mishka. You're an angel.

Emergency Meeting for Parents of Deaf in NYC

I received this urgent message below this from a friend who works in the New York City school system. I've removed her name to protect her identity in my blog, but I felt this was important to reprint here in its entirety. I don't live in NYC. I wanted to get the word out. Isn't it just like a politician to have an important meeting like this at the last minute? If it's sparsely attended, he'll say no one cared enough about the changes he planned to make, when the reality was few people knew about the meeting. It's the holidays when people are busy too. If you live in the NYC area, please plan to go this coming Monday night if you can.

THIS SHOULD NOT BE A SURPRISE, SOONER OR LATER IT WAS GOING TO HAPPEN.

IF YOU CARE ABOUT DEAF, HARD OF HEARING, BLIND AND THE VISUALLY IMPAIRED STUDENTS IN BOTH PUBLIC SCHOOLS AND PRIVATE SCHOOLS.....PLEASE PASS THE WORD ALONG IN TO PARENTS AND ANY DEAF GROUPS YOU KNOW. MAYOR BLOOMBERG IS ABOUT TO MAKE SOME HEFTY CHANGES THAT WILL AFFECT THE HANDICAPPED STUDENTS OF NEW YORK CITY.



LEAGUE BUZZ ALERT!

Proposed Dismantling of HES and EVS Come to a Town Hall Meeting on MONDAY DECEMBER 10th, 2007 to have your voice heard!



The League for the Hard of Hearing has just learned that discussions are underway at the NYC Department of Education regarding dismantling Hearing Education Services (HES) and Educational Vision Services (EVS) and shifting the responsibility for meeting the educational needs of deaf, hard of hearing, blind, and visually impaired children to local school districts and school principals. These school districts and school principals do not likely have either the expertise or the funds to meet the specific educational needs of these children.

The National Federation of the Blind of NYS is partnering with the Parents of Blind Children of NY to hold an open forum in the form of a Town Hall Meeting to address recent and future changes being proposed. The meeting will be on Monday, December 10th from 6-9 PM in the Selis Manor auditorium located at 135 West 23 Street between 6 and 7 Ave. They are hoping that parents of deaf and hard of hearing children attend as well, to speak to the needs of their children.

Representatives from the Department of Education and EVS will be present to speak and answer questions regarding initiatives already underway, as well as representatives of other organizations.
For more information on hearing loss in children, click here.
League for the Hard of Hearing50 BroadwayNew York, NY 10004917-305-7700 (V)917-305-7999 (TTY)www.lhh.org

Second Class Citizen

This happened awhile ago, but I still laugh whenever I think about it. One time Meg and I went to a Thai place for lunch. (The picture above has nothing to do with this story, except that it's of a Thai waitress I got off the net.)

Meg had been mentoring me in ASL and our routine was to eat lunch in restaurants with our hearing aids removed. Because I needed the ASL practice, she normally did the oral speaking when the wait staff came around for our orders. I would point to my order. If the waitress had a question I couldn't lip read or she didn't face me, Meg would sign it to me and I would sign back. Thus, waiters and waitresses sometimes got the impression I was not oral.

I was not doing this to pull the wool over any one's eyes. I want to make it clear I wasn't asking for special favors or accommodations or even sympathy in these restaurants. My decision not to speak was purely motivated by the need for extra ASL practice. The more I could cram into our lunch sessions, the better. Also, I found it relaxing to be able to eat in restaurants without my hearing aids; to be able to communicate freely in ASL without having to worry about hearing. As a late-deafened person, I cannot begin to describe the excitement I felt by doing something as simple as going out to eat in a busy restaurant at lunchtime without the usual encumbrance of worrying about how I was going to HEAR the conversation.

So as usual-- when the waitress came around Meg ordered orally, and I pointed. The waitress had a question about my order and directed it to "oral" Meg, who signed to me, then I signed back, and Meg answered the waitress' questions for me. Soon our meal was brought around and we ate and signed happily for about an hour. Then, I became full and decided I might need a box to take the rest home. I signed, "FULL! Need box." Meg, who eats like a bird, also had a fully loaded plate of food. So Meg waved the waitress over and asked for our meals to be boxed up. Then we began signing about where we wanted to shop after the restaurant. . .

Next thing I know the waitress came over to the table and started boxing up my food, as if I were a child. This is new, I thought. Normally they just drop off the boxes and leave. I started to grab the spoon, but she kindly waved me off and indicated she wished to box it for me, so I let her. And sat there with an awkward stupid grin on my face. Meanwhile Meg waited and waited with her empty box-- thinking the waitress would offer the same service to her. After all, she had more food left on her plate than me. Next, the waitress closed the lid of my box carefully, placed it neatly into a plastic bag, then knotted it tightly -- all the while smiling in such a kind, benevolent way. Then she bowed slightly, turned on her heel and walked away, leaving Meg gaping over a humongous plateful of Thai food and an empty box.

Imagine Meg's surprise.

I signed that maybe the waitress thought she was more capable because she was the "oral" one. We shrugged it off and laughed. But I was honestly shocked. I never realized some people treated the deaf differently, like invalids. This was my first clear experience of audism. Though it wasn't altogether negative, I can only say that was because I tried to justify the waitress' actions by telling myself she meant well. If I really weren't oral, it probably would have hurt deeply that she had bagged my food as if I were a helpless five-year-old.

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.