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.

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.

Carol?

For those of us who cannot hear, phone communication poses a huge challenge. When we are late-deafened, it is sometimes difficult for others to understand why we no longer use the phone. We used to use the phone. We still talk. Now suddenly we avoid the phone -- and it seems somewhat anti-social--especially in today's world when everyone else walks around with phones glued to their ears 24/7. Even my 80-year-old father can't grasp why I don't carry around a cell phone like everyone else. Well-- I do actually. I carry a Sidekick and I text people. (Don't tell him please. He hasn't learned how to text. )

A few days ago someone left a message on my phone because she needed to change my appointment. I can't hear phone messages and rarely use the phone unless I have two super loud 50db amplifiers plus my hearing aids with telecoil compatibility. Then I might briefly talk to family members or close friends --people whose voices I know, who also know me, so they know to shout into my ear. Occasionally it works. . . in a pinch. . . if the house is completely quiet. Nevertheless my considerate husband saved the voicemail message, so I could listen to it. HA!

Two nights ago he asked if I had listened to the voicemail yet. He's a bit fastidious about keeping the phone free of unnecessary messages piling up.

"I can't hear phone messages. Can you write it down on a post-it and leave it somewhere? I'll email instead." I said.

Yesterday morning I found a yellow post-it on the coffee-maker. He knows me so well.

Kim--Email Carol to change your appointment. --he wrote.

What appointment I wondered? Who is Carol? What is her email? Or her phone number even?

Last night, once again eager to delete superfluous phone messages, my husband asked, "Have you changed that appointment yet? Did you see my note? Can I erase this message now?"

"You didn't leave a number," I said.

"I thought you were going to email her," he accused.

"I would if I knew who she was. I have to call with IPrelay --and I don't have the number."

"Did you at least TRY listening to her message?"

"Fine! Gimme the phone!"

I listened. This is what I heard. --"Mwah Kim, mwis is mwah-mwah. bwah-bwah-mwah mwah, mwaaaaaahhh, mwah hahaha mwaa mway mwya meh ma." You get the idea. . .

"Can't hear her," I said.

He listened. "She's from the DVR." (Department of Vocational Rehabilitation)

Okay? I just have to ask. . . I had the appointment with the DVR because I am deaf. WHY would she call on the phone?? Do people not get this? To call a deaf person with a regular phone is sort of like expecting a blind person to read a fine print document. It's like asking someone who uses a walker to hike over a rocky trail. The purpose of the DVR is to help the disabled with accommodations they might need in their work environments. The DVR has my email. I have tried calling them with IP relay before. Huge hassle! Automated phone system with a long menu. Isn't it ironic that an office whose sole purpose of existence is to help the disabled with accommodations would be so unaccommodating?

I will try to email the woman I normally meet, (not "Carol" since she didn't leave an email address), and I hope nothing horrible has happened to her, and also that she gets my message.

Getting What You Want

Recently our local ALDA president asked me to write about my experience of trying to get accommodations for my son's high school graduation ceremony this past June. I thought I would include it in here as well. Many of us struggle through this process when we attend public events. In the same newsletter, another friend will be writing about how she tried to get accommodations when she was called for jury duty. Why is it the wheelchair ramps and braille on the doors and elevators are always in place, but the deaf have to make special requests?? Then we have to fight tooth and nail to get it. Here's my story--

I had been through the process of lining up accommodations for my kids' graduation ceremonies before. I knew I needed to start early. With that in mind I typed off my first email to one of the high school counselors in charge of the ceremonies named Sara in early April. Then I said a silent prayer that the other one, Dave, wouldn't be involved in arranging details for that portion of the night's events. I had dealt with him before.

When I didn't hear back for several weeks, I emailed again. If you have normal hearing you might be wondering why I didn't call. I do not hear very well. I might have used IP relay, but like every other business in America, the school has an automated answering system with a menu requiring a series of numbers to be systematically punched in before a human comes on the line. The relay operators can't punch the numbers for us, and by the time they tell us the selections on the menus, we make our choices, then tell the relay operators what numbers to punch in, the automatic machines automatically hang-up. It's a nightmare for deaf people-- but that's for another blog. Anyway, so I emailed the counselor a second time and received this prompt reply back.

(And yes!! These excerpts are from REAL emails I have saved on my computer, but the names have been changed.)

From Sara-

"Kim,
I forwarded your emails to Dave. You haven't heard from him?"

DRAT!! This is not good, I thought. Then I emailed Dave.

"Hi Dave,
I am deaf. I will need accommodations for the graduation ceremony on _____. I contacted Sara on _____, and she said she forwarded my requests to you. What I need is this:

http://www.ncdhh.ne.gov/brochures/cart_broch.pdf.
It's called Computer Assisted Real-Time Transcription, and basically requires hiring a transcriber, providing a screen and special equipment. The cost is normally about $125.000 and I can provide you with a list of transcribers in the Seattle area, but they need to be lined up soon. They provide their own equipment and screen. I am not fluent in ASL, as I'm late-deafened, so hiring an interpreter wouldn't be a good idea.


Please get back to me as soon as possible so we may make arrangements as I feel it's getting late."


From Dave--
Kim, I have been doing graduations for over 10 years for ___, andhave never been aware nor asked to look into either of these options. I have no idea who to turn to for this particular equipment.
I am not sure I will have the time to take care of this and I do not know who would take care of the costs. I am not aware of the person who provided you with (. . .the past accommodations) I will check with __________, ASB Activities Coordinator,on Monday . . .

DRAT--AND DOUBLE-DRAT!! I thought. He had done nothing!!! (ARGHHG!!) WHY did he wait so long? Why did he not find out who would pay at least? When was he going to tell me he wasn't planning to do anything? And WHY did he think the Associated Student Body should pay for my accommodations? What?! Were they supposed to hold a bake sale to pay for the CART and transcriber? Did the ASB have to pay for the wheelchair ramps too? Get real! I had to do some deep breathing and relaxation exercises before sending my next email.

My email to the principal--
Dear Ms. Principal,
My son will be graduating on June ___, and I am in need of accommodations for the ceremony as I am deaf. I emailed ______about this on _______ and haven't heard back. I will need preferential seating, and Computer Assisted Relay-Transcription(CART). I can provide you with a list of people who offer this service. . . . Please let me know what you plan to do to accommodate me for my son's graduation ceremony. If I don't hear back soon, within the week, I plan to contact the Office of Civil Rights to file a complaint against the school district.

Message from Ms Principal-
Hello Ms. _____I am now just reviewing my e-mails. I am sorry that Ms. ______ was not able to get back with you yet about your accommodation request. She is researching how to get what you have requested so she can have information when contacting you. . . . I also cc. Mr. ______. . . . Please know we are well aware of the right you have to have accommodations and the need to help you. That all being said, I personally want you to be able to enjoy this important moment for you son, _____. We will make sure your request is honored. . . Thanks for letting me know of your concern.

And I DID enjoy his graduation! We were seated as close to the stage as possible. I sat right next to the transcriber, who typed every word, even the announcements and the words to the songs were typed onto the screen too. It was fabulous!! The song lyrics were appropriate and moving. The student commencement speeches were sweet and funny and eloquent in the upbeat, informal, endearing way only eighteen-year-olds can be. I enjoyed it SO MUCH!! The school paid. Yahoo!

What I have learned is:
1) Start your requests early
2) Know what you want
3) Have information ready
4) Don't back down
5) Play hardball if you need to. You have nothing to lose. As my mother always said--"The squeaky wheel gets the oil."

I also want to point out my threat to file a complaint with the Office of Civil Rights was not a bluff. I have filed against the school district in the past, and would have done it again. I have a hunch Ms. Principal was well aware of this, even though it wasn't her school I filed against. Know your rights and do not make empty threats.

It is nice to follow up with a thank-you note afterwards, though not absolutely necessary since they are required by federal law to accommodate you, but it's still thoughtful and smooths things over after you've given them such a hard time making them jump through hoops and all. 8-)

By the way, none of the graduates pictured above are my son. Those are graduates of Florida State. I just thought it was a cute picture.

Impaired?! (ARRGGHH!!)

Last night, my brother made the grievous error of calling me hearing-impaired. I didn't mean to jump down his throat, but I hate that term. I just HATE it. I don't feel "impaired" in any way. In fact I am healthier than he is. I can't hear well, but there are so many other things I CAN do. Many things I do better than hearing people. For example, I have a super-duper sense of smell. Also, some of my friends have pointed out that I'm more observant of visual details than the average person. I feel most deaf people learn to compensate for their hearing losses, and live relatively normal lives. I believe I have had a really GOOD life compared to most.

I am not magnificently talented, but I have a personality and interests outside my hearing loss. I'm an avid reader. I know a bit about butterflies and gardening. I love opera-- what little I hear of it-- but I love the stage and sets and costumes. I have raised three children, manage a home, dabble in ethnic cooking, and I've recently become a vegetarian. So I've been experimenting with vegetarian dishes lately. I am taking American Sign Language, learning how to belly-dance and how to play a West African drum called the djembe. I'm also in the process of redecorating my home since my youngest is going to move out soon. I'm planning two trips out of the country in the coming year too. That's why this blog is called LIFE and deaf. Deaf and hard-of-hearing people do all the same things everyone else does. We're not all about deafness. If you are deaf or hard-of-hearing, I'd love to hear what you're doing, what your hobbies are, and your talents. Please- drop a line. I want all those hearing people out there to stop thinking of us as being "impaired."



Today, and for the next few Sundays, I plan to dedicate my blogs to outstanding deaf and hard-of-hearing people who have achieved unusual success above and beyond the norm. Deaf heroes. My first choice is William "Dummy Hoy." ("Dummy is NOT a nice word to call the deaf today, but William Hoy was born in the 1860's when the word 'dumb' meant 'mute', not stupid. "Dumb" has since morphed into a more negative, ugly connotation for the deaf, and you could get punched in the nose for calling a deaf person that today.) William Hoy was the first deaf major league baseball player. Not only was he a great baseball player, but he also helped his team by inventing "secret baseball hand signals" still in use today. Many deaf people are very athletic and signing can be put to good use in a lot of sports! Many deep sea divers use it, for example. To read more about William Hoy go here William Hoy.

Midieval Deaf

The Medieval Festival.


Ever since I went to the Medieval Festival last Saturday I have been thinking about how difficult it would have been to interact with anyone in a busy village without hearing aids. I'm not sure what social convention required of women other than domestic chores and child bearing. Loud community gatherings at a faire with the neighbors would have been challenging. Even today, with hearing aids, I tend to avoid busy activities that require talking to lots of people.

Of the events I attended last Saturday, the play was the most difficult to follow because the actors all wore wooden masks over their faces making it impossible to see their mouths move. All the entertainment took place outside, so no walls offered acoustical sound enhancement. Magic, musical and jousting performances were delivered without the benefit of microphone equipment or sound systems. Many of the males wore beards obsuring their mouths-- a problem for those of us who read lips. I couldn't hear or understand anything-- EVEN WITH HEARING AIDS. I had to ask my family constantly what was going on. During a musical performance the musicians invited the crowd to sit closer, so I went. I enjoyed the relaxing atmosphere of sitting near the musicians. I could hear the music better, especially the drum and bagpipes; And being closer I could read their lips while they sang. But it turned out the words to their songs were in Gaelic, so it didn't much matter. Then a story-teller told a tale in English about a stolen pork chop and some monks, and a miracle performed by the Virgin Mary. I heard maybe 1/3 of it with my hearing aids, and realized I would have been deaf to it all without. A magician performed some impressive trickery with scarves and rings, then we all went to the Inn for potage and mead-- the highlight of my visit back in time.


I have wondered how common hearing loss was in 1376. I've read the average lifespan during medieval times was about age thirty. Many of us who are late-deafened may not have survived the diseases or conditions that deafened us if we had been alive in the middle-ages. For example, my hearing loss was theoretically caused when the measles damaged my cochleas as a little girl, which supposedly started an early progressive hearing loss. Without the benefit of aspirin to bring my high temperature down, would I have died? Statistically, one in three people over age sixty-five develops hearing loss today, but if so few people lived to age sixty-five in the 1300s, I wonder how many people developed the relatively common hearing loss associated with aging? I don't know the answer to this question, but I am beginning to speculate that maybe hearing loss was rare. I just don't know.

Near-sightedness, on the other hand, is common in young people today, since the average onset is about age ten. I assume many people would have been near-sighted during the middle-ages too. I cannot imagine my life without glasses! They are so much better at correcting vision than hearing aids are at correcting hearing. Medieval women spent hours each day laboring over needle work. I would choose glasses over hearing aids if I could pick only one, as I feel the ability to see would have been more necessary for survival. With both a seeing and hearing problem, I don't know how effective or useful I could have been.

Yikes--it's a scary thought! No wonder they drank so much mead and ale!

My Top Five Hearing Aid Hate List

My Top Five Hearing Aid Hate List:

1. Noise distortion.
A) Over--amplification in frequency ranges where I don't need it.
B) Under-amplification in the frequency ranges where I need it.
C) Over-amplified noise drowning out the under-amplified sounds I need to hear.

2. Discomfort-
A) Too much stuff in, on, around the ears.
B) Plugged up feeling inside the ears.
C) Weight hanging over ears.
D) Soreness of molds where rubbing inside the ears.
E) Sweaty when hot.
F) Stickiness after wearing for awhile.

3. Whistling like a teapot at all the wrong times. (Is there ever a right time for that piercing squeal we all know as the dreaded "feedback"? Have any of you ever been sitting quietly in your book group trying to listen to the discussion when someone says, "What's that . . NOISE?" The room becomes deadly quiet as the others cock their ears like hunting Labradors. Then one of them points to you. "It's HER!" she yelps accusingly. They all stare in disbelief as you tootle away. You've been caught again-- disrupting the book group with inappropriate noises.) FEEDBACK.

4. I can't hear anyway.

5. Why do they cost so much?!?

What's on YOUR hate list? CI wearers feel free to chime in even though you have different issues.

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!

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.

Terms of En-deaf-ment

When you lose your hearing, one of the first problems you must learn to deal with is telling complete strangers all the time, everywhere you go, in every new situation, that you cannot hear. For example, today before 11:00am, I told at least six people I had a hearing loss because my son needed a surgical procedure. He's an adult, but since I am his mother and had to wait for him in the waiting room, I had to tell office staff, his doctor, the anesthesiologist and two nurses. Additionally I had to tell someone when I got a latte.

Unlike blind people or the disabled where there's always some kind of obvious clue-- crutches, dark glasses, wheelchair, cane,. . .with hearing loss there isn't anything too unusual about my outward appearance. Everyone assumes I can hear unless I tell them otherwise. I have learned from experience it's best to get this out of the way first thing. I would rather someone know I can't hear well than having them think I'm stupid or not paying attention.

After informing someone of my hearing loss, then I brace for the reaction, which can be anywhere from "How the FUCK am I supposed to talk to you?!" (Yeah -- someone actually said that-- more than once!) to gushing sympathy --"Oh you poor thing, I'm soooo sorry." Mostly, it's somewhere in between. Generally, people are pretty good about it. I just want acknowledgement that necessary accommodations may need to be made, not sympathy and certainly not anger. What I usually want is for you to look at me, take your hand away from your mouth, stop chewing your gum and biting your nails, or whatever other annoying oral habits you may have, so that I can read your lips.

I also hate it when people assume they know everything about me because they've had previous experience with another deaf or hard-of-hearing person. I do not need you to tell me about an audiologist or doctor who will help me. You don't know anything about me, or my hearing problem. I realize you think very highly of the doctor that helped your grandma, but not all hearing problems are alike. I haven't asked your advice, but let me assure you I've researched my hearing loss thoroughly and I see an internationally known specialist downtown-- probably one of the best on on the west coast. I think I have it covered--thanks. We aren't friends. You're a stranger.

Recently on one of my lists, the question of labels came up again. What do you tell people, so they understand you can't hear? This can be awkward for many of us. If you're not culturally Deaf, you basically have three choices. The Deaf make distinctions between D-deaf and d-deaf (meaning those who are deaf and also speak orally.)

1) d-deaf. The rest of the population doesn't have a clue that some deaf people speak. To inform them of your deafness may confuse them. However in my opinion this is the most correct and effective term, especially if your deafness is severe-profound in the speech ranges-- which mine is. The deaf word gets their attention. You can use a modifier, such as saying "partially deaf" which one of my list-members cleverly thought up. For the past four years, I've always used "practically deaf" or "late-deafened"-- a term coined by the Association of Late-Deafened Adults (ALDA). These are people who became deaf post-lingually like me. Incidentally, 70% of all deaf people become deaf post-lingually.

I looked up the word 'deaf' in the Websters on-line Dictionary. Here's the definition below.

"deaf /dɛf/ Pronunciation Key - Show Spelled Pronunciation[def] Pronunciation Key - Show IPA Pronunciation adjective, -er, -est, noun
–adjective
1.
partially or wholly lacking or deprived of the sense of hearing; unable to hear.
2.
refusing to listen, heed, or be persuaded; unreasonable or unyielding: deaf to all advice. –noun
3.
(used with a plural verb) deaf persons collectively (usually prec. by the).
[Origin: bef. 900; ME deef, OE déaf; c. MLG dōf, D doof, OHG toub]"

Still, there can be drawbacks to using the word deaf. When I inform people I'm deaf, they often assume I speak sign language. Sometimes they even compliment me on my ability to speak orally. I feel like complimenting them back--and sometimes I do --with a wink. I actually do use a little sign language, but I'm far from fluent. Mostly, when I'm in a situation with strangers I don't feel like giving a lecture on deafness, why I speak so well, or pointing out how many deaf people actually DO speak orally.

The other two options for informing people and labeling your hearing loss are not without their problems--

2) Hard-of-hearing. What the hell does that mean? Why do the other disabilities not have a similar distinction? Hard-of-seeing as opposed to blindness, or Hard-of-walking? Let's call a spade a spade. If you cannot hear well, you are deaf. I do not understand why people feel it makes a big difference that one person can hear better than another when it is a fact all people with hearing loss struggle. Take the blind. They are ALL called blind, even though some of them can read large print books, and see well enough to walk without a cane. We have handicapped parking at work and a special door for them to walk through. It doesn't matter if they're in a wheelchair, walker or use crutches. They are ALL considered handicapped. We do not call some of them "hard-of-walking" and expect more of them because they really aren't that handicapped. Finally, I should point out it is a fact that those who are culturally deaf and do not speak, frequently have better hearing than those who are late-deafened or hard-of-hearing who DO speak. We are ALL deaf! So I personally feel the term hard-of-hearing is a very misleading designation that causes a schism within the Deaf/deaf community.

3) Hearing-impaired. This is equally vague, and also quite negative. I hate this term. I used to use it because someone told me it was politically correct. Then one day while skiing, I started feeling really good about myself that I had such good health, and I didn't feel at all impaired. That very moment I saw a man whiz by me skiing with no legs. He didn't seem at all impaired either. So I stopped using that term. I do not consider myself impaired. I am challenged in some situations--yes. I am proud of the ways I meet these challenges on a daily basis. I don't consider myself "impaired."