Dear Rachel

I loved your letter and the way you advocate for yourself.

For those who haven't seen it, go here--http://cochlearimplantonline.com/blog/?p=90

Dear Dr. ——————,
I’m looking forward to being in your 20th Century Art History course this quarter on Mondays and Wednesdays at 8AM - 10:30 AM. I was born profoundly deaf, but I hear with an extraordinary technology, cochlear implants, and I hear like an almost normal hearing person. Because my hearing is still not perfect, I will have a few accommodations which include an assistive listening device. I will have a speaker near my desk and you will wear a microphone so that I can hear you well. I would like to meet you at least 15 minutes before class starts this Monday so that I can give you my accommodation memo and show you how to use the assistive listening device. Please let me know if this will work; otherwise we can certainly arrange a different time.
Thank you in advance,
Rachel Chaikof

By and large, I've found the majority of people really do want to accommodate us, however they often feel confused because they don't know what to do. I'm sure telling them about your equipment and what you'll need from them ahead of time goes a long way toward relieving their stress over having a deaf student in class.

I myself do this at work when we have subs or new coworkers. I know when they first learn I'm deaf, they're frightened of many things, but mainly they're afraid they will do something wrong to offend me by not accommodating me properly. Once I go over my needs, and how my equipment works I can see the relief on their faces. I also crack a few jokes, so they understand I'm not at all sensitive about my deafness.

It seems strange that we have to go to such efforts to relieve OTHER PEOPLES' anxiety, but I have learned this from the experts-- disabled people in wheelchairs. You see, since I work with the public I also sometimes feel nervous dealing with people who have special needs. If they seem comfortable with themselves and tell me what they want/need, I feel so much more confident with them.

We can't expect hearing people to bend over backwards for us without first explaining our needs. We must realize sometimes we are the very first deaf people they've ever encountered. They've seen all the stereotypical deaf people on TV and they find the situation frightening. They are wondering weird things. What will if happen if she starts signing? What if I need her attention and she can't hear me? What if I can't understand her speech? Why does she frown at me when I speak? Her hearing aid is making a loud noise, should I say something? (I have a tendency to frown at people who are difficult to lip read. It's a frown of concentration, not anger.) So I answer all these questions up front. I often show them a sign or two for fun. Everyone at my branch knows the sign for bathroom, for example. I tell them ahead that I frown when I don't understand their lips, and to pat me on the shoulder when they ask a question that I haven't responded to. This goes a long way towards helping them accept me.

You are on the right track with your letter.

It's interesting reading about your photography. My daughter also loves photography and originally thought she might major in art, or English. She couldn't decide. Then she took a psychology class and was hooked. She's in her fourth year of psych. It's going to be a long haul.

Deb Ann asked--

"By the way, why did the doctors say such things like that? Did they really graduate from college?"

I'm going to write about about my medical history in greater detail later, but I did want to give a short answer to this. From my experience few doctors know much about hearing loss. I think they must gloss over it in med school, because most doctors I've encountered seem only slightly better informed than lay people. General Practitioners and specialists other than ENT's might occasionally screen for hearing and make a diagnosis, but after that they send you to a specialist because hearing loss is over their heads.

Sometimes even ENT's know very little about hearing loss. For example the one I currently see for my sinuses specializes in sinus problems only, and has admitted he sends his patients with hearing loss elsewhere.

The only doctors I've met who seem to really understand hearing loss are otolaryngologists, which are ENT's who only see patients with hearing problems. Over the past 30 some years, I have seen four different otolaryngologists and three different ENTs in the Seattle area. The otolaryngologists all agree with my "idiopathic" diagnosis-- though they have thrown out several theories. After testing everything, they always attach a great deal of importance to my measles experience as a young child. All of them have said it was "probably caused by the measles." So just to simplify things, I tell most people the hearing loss was caused by the measles. As I said before, most lay people freak out and start telling me about specialists and giving me advice when they learn my hearing loss is "idiopathic" meaning cause unknown. After seeing seven specialists, I am satisfied with the explanation that sometimes "we just don't know."

Still, I see an otolaryngologist every few years, just in case any new tests have been developed that might give us a clue about why my cochleas don't work. The reason I have moved around between doctors was to see if any of them could come up with an explanation. It's good to get a second or third opinion. The first otolaryngologist I saw retired. He was old when I was initially diagnosed. The second one I saw has an international reputation, but a strange bedside manner. My husband still sees him for his Menieres, but he's definitely an "odd duck" and we laugh about his weird behavior sometimes. The third one I saw used to be in the same office as the "odd duck" then she moved somewhere else. The fourth was for a CI consultation. The reason for the different ENT's was because we moved and I didn't like the first one. It was clear he didn't have a handle on it. The second one retired, and the third one is in the same office as the second retired ENT, but he specialized in sinuses. Still, I like sinus guy's bedside manner very much and he's local, so I have all my hearing records sent to him. He is happy to refer to the otolaryngolgoists, and he is also connected to the audiologists I see, so it's a convenient relationship.

All of the audiologists in my office have their doctorate degrees in audiology too, but supposedly they can't diagnose biological hearing problems. They can only make a recommendation to see a doctor. Yet because they see hundreds of patients with hearing loss on a regular basis I find them very well informed and trust their opinions and recommendations much more than my GP.

The doctor I saw last week was a neurologist, and he's got an excellent reputation. He is the second neurologist I've seen about my migraine headaches. The first one had me on too many drugs and didn't seem to be listening to me when I said I didn't like these drugs. So I decided to see this other guy who my husband has seen about his Menieres when they were first diagnosing it. Neurologist number two has already changed my prescriptions to two drugs I tolerate better. This is the reason I haven't been blogging as much. I'm just feeling better and I'm busier.

I have mentioned I wanted to get my headaches under control before even considering the hybrid CI. So that's where we're at with the doctor situation.

Like you DebAnn I think it's weird that specialists could know so little about hearing loss, but the ears are a complicated organ. Few doctors run into idiopathic hearing loss in the general population. The only ones who see it often are otolaryngologists who deal with deaf/hh people all the time.

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!

Coolin It In The Southwest

There's nothing that says Southwest quite like men with cowboy hats and hot sauce. I just had to take a picture.

Below are some real old time cowboys reenacting the gun fight at the OK Corral in Tombstone, AZ. The one on the right played Wyatt Earp. I thought he was HOT. The real Wyatt Earp was quite handsome just like this guy.

I had a hard time finding vegetarian food in the Southwest other than spicy beans. I'm not a big fan of beans. The two times I ordered "veggie burgers" they served patties made of out black beans and hot peppers. I prefer soy burgers without peppers. People in the Southwest like to cut the heads off bulls and other animals, then hang them up for decoration in their restaurants and other places of business. This reminds them never to eat beans combined with hot peppers. Black beans and hot peppers cause gas, diarrhea and indigestion. That is why people in the Southwest always eat meat.



We went for a short hike in the White Tanks to see wildflowers in bloom.

The tall cactus here is a saguaro, and the smaller pinkish one on the left is a barrel cactus, I think. The saguaro is smallish and may not be that old cuz it only has one nicely developed arm. Arizona had a lot of rain this past winter, so the desert started blooming earlier and was more spectacular than usual. I think the yellow flowers below might be Mexican poppies, and the blues could be some kind of blue sage. But I'm not an expert on wildflowers of the Southwest, so if you know the names, I would appreciate the correction. I loved the different colors against the pinkish rocks.

Waiting Forever At the Blinkin Doctor's Office

Today I had a follow-up appointment for last month's surgeries. The doctor wanted to know how I was doing, and to make sure all my incisions had healed. I had never been to his office before since both surgeries were emergencies.

After filling out all the paperwork I told the receptionist, "I am deaf. I will not hear the nurse when she calls my name. Please tell her to tap me when it's time to see the doctor."

"OK--I'll mark that here in your folder," the receptionist said.

I waited forty-five minutes, then went back up to the desk.

"You didn't come when we called," she said.

ARRGGGHH!

This has happened in other offices so many times I could scream. I have another doctor appointment on Thursday. Do you think anyone would notice if I wrote DEAF in big black letters on my forehead with a Sharpie? Not that I plan to mark up my face, but does anyone have an answer for this?

I have a pair of fun Halloween Jack-O-Lantern blinkers that I put on my head for our Trick-or-Treaters each year. I've been thinking maybe a pair of Deaf blinkers would help remind medical staff they have a deaf patient in the waiting room. The Deaf blinkers could also work on the bus to remind a bus driver he needs to wave at me when it's time to get off the bus. (See previous blog.)

I have never seen Deaf blinkers, but I'm thinkin two great big yellow ears on floppy springs with the words Deaf! written on top. Or maybe since Hearing people like the ILY sign so much, two floppy, blinking ILY signs with DEAF written across each hand. OR blinking red LIPs would be another great symbol of deafness, since many of us read lips. . .OR maybe instead of blinking things on the head, how about a beautiful blinking pendant?

Deaf people need something that's internationally recognized as a proud symbol of deafness, similar to what the blind have with their white canes.

It's just a thought.

Free Deaf Bus Fare

I live in the woods east of Seattle. (Yes-- that's my front yard.) When we first moved here, black bears used to wander into our yard sometimes. Then some acreage behind us got developed, and we only see deer or coyote now. We've recently been reclassified from rural to "suburban," but most the roads around here are still windy and have only two narrow lanes. One of the roads on my commute routinely floods during a good rain, so I have to brake for confused salmon flopping their way across blacktop.

I have lived in the woods most my life. I can dodge deer, flopping fish, and downed trees in the road with a logging truck on my tail no problem, but put me in heavy
traffic and I become a nervous ninny. So, if I have to go to Seattle-- which is sometimes necessary because all the best doctors are downtown-- I take a bus. Over the past couple decades, Seattle has steadily grown to the point it is now rated among the nations worst traffic cities for gridlock. Gridlock Alert: Five Cities With the Worst Traffic.

Public transportation is free for disabled people in King County (Seattle-metro). But here's the glitch. In order to get the "free" ride, I have to tell them in my perfect Hearing voice that I am deaf. I have to tell the driver anyway, because I won't hear him call out the stops where I need to get off. I go into Seattle so infrequently, I don't recognize street corners by looking out the window. Usually I get on the bus and tell the bus driver, "I am deaf and need to get off at 5th and Cherry (or wherever). Could you please wave at me when we get there? Because I won't hear you."

"Sure." he'll say.

It never fails. We hit 5th and Cherry (or wherever I need to get off) and he "forgets" to wave me down. He finally remembers a stop or two later.

"Oh NO, I am SO sorry!" he'll say. "I forgot!!! You don't seem like a deaf person. Fifth and Cherry is seven blocks back that way. . .I'm SOOOOO sorry!!!" (I wonder how a d/Deaf person is supposed to 'seem', but I know what he means. We are not supposed to talk, or we're supposed to talk "funny" and make wild gestures like d/Deaf people do on TV.)

This has happened at least. . . five times now, which is how I learned it's best NOT to talk when I get on a bus.

It's better to hand the driver a note. I feel like such a phoney. Worse, handing the driver a note reinforces the D/deaf stereotype that D/deaf people are all mute. But when I hand the driver a note, it helps him to remember he has a D/deaf person on board who needs to be flagged at a stop.



When we get to Fifth and Cherry, he smiles, waves and winks. The note has served its purpose. I sign 'thank you' as I leave, and say a silent prayer of gratitude that the bus driver wasn't a CODA, and that no one on the bus recognized me or started a conversation.

Wouldn't that be embarrassing? How would I explain that yes, I COULD talk and No-- I'm not fluent in ASL, but I really AM deaf, just not Deaf, but LATE-deaf. . .and I was faking being non-oral because the last five drivers forgot to flag me. . . Or maybe I could tell a little white lie-- I'm Late-deaf AND I have laryngitis! No-- this wasn't a ruse to get out of paying bus fare. . .

Or maybe I should carry copies of my audiogram to prove I can't hear, just in case someone catches on that I can really talk? That's assuming he could read an audiogram. It's an awkward position. I have to go downtown at the end of this month for an appointment at Swedish Hospital with a neurologist, and I'm already stressing over it. The ride is boring.



Two bus transfers between here and there. SIGH.



Maybe I should drive. . . But our traffic here in Seattle is horrid. . And I would have to pay for gas and parking. Not to mention finding a spot to park, which is a nightmare in itself.

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.