I'm published! (TBT)

This is my first Throwback Thursday post! Since Brandt is doing so amazingly well with his implants, I don't really have anything new to report. So I wanted to share my story "Homeless Tequila" that was published in the 2011 edition of UALR's Quills and Pixels nonfiction literary journal. The stories will be familiar if you've read all my posts, but they're synthesized into one piece. Enjoy!

"Homeless Tequila"

I have bounded into the silent living room and found my hard-of-hearing husband Brandt sitting in his recliner, watching Mythbusters on television.  It’s on mute, and he is concentrating on the closed-captioning text scrolling across the screen.  I yell “Hi honey!” to announce my presence.

Unable to hear my approaching footsteps, he has responded—as usual—to my loud salutation by jumping in his seat and screaming in terror. 

“Hang on, I’m Earless!” he grumbles from his recliner, reaching for the beige hearing aids sitting on the coffee table.  As he pops them in, he pictures himself as Mr. Potato Head, inserting his comically large plastic ears. 

To make amends, I cheerfully screech, “Oh honey, you’re so cute!”

A mixture of pain and confusion pulls down his face.  “Why am I ‘Homeless Tequila’?” he asks. 

I stammer, laughing, “Wh—What?!” 

Near tears, he continues.  “Why would you call me that?!  I would never call you something like that!  That’s just mean, how would you feel if I greeted you like that?”

This wasn’t our first big misunderstanding, but it was by far the worst.  Or was it the best?  Well, it was certainly the funniest.

Brandt and I had been together for a few years at that point, and he’d been wearing hearing aids for several years before we met.  He first noticed a problem during his senior year of high school, and was diagnosed with mild hearing loss (about the decibel level of a loud whisper).  But it was graduate school before he accepted that he could no longer function without hearing aids. 

His hearing loss wasn’t an issue for me, because, by fate, luck, or random chance, I had spent my entire life connected to people with hearing loss.  Aunt Louise, my great-aunt, godmother, and namesake, went deaf at age 20 from an antibiotic and became a legend in the hearing loss community.  She helped establish the Arkansas Deaf Relay (one of the first in the country) and was a well-known advocate for captioning and other issues vital to people with hearing loss.  In 2004 she became the first adult in the state to have bilateral Cochlear Implants (commonly called “CIs”)—surgically implanted electronic devices that digitally replace hearing in deaf people who do not benefit from hearing aids, which can only amplify sound.  My Grandma Jean also had a hearing loss, caused by a childhood bout with scarlet fever.  Her hearing was restored by the same world-renowned UAMS surgeon who implanted Aunt Louise’s Cochlear Implants.  And my good friend of 10 years, Josie, was born with severe hearing loss and has worn hearing aids all her life. 

But I quickly learned that being in a relationship with someone with a hearing loss is a lot different from having a family member or close friend with it.  It affects just about every aspect of our life together.

We avoided parties and busy restaurants because it was impossible for Brandt to communicate with anyone, including me.  At my family’s big holiday gatherings, he would run off to a quiet corner and play on his cell phone. 

We couldn’t see movies in the theater near our house in Memphis because there weren’t any captioned showings.  I surprised him with tickets for the new Star Trek’s opening weekend—the closest showing with captions was four hours away in Nashville.  That was a long drive just to see a movie, but it was worth it.

Music all but disappeared from my life, since it was “distracting background noise” in the car, the house, and at friends’ dinner parties.  I got in the habit of asking the hostess if she’d mind turning off the satellite radio, because Brandt couldn’t understand anyone with it playing. 

My beloved live theater and musicals disappeared as well, since the closest theater that offered captioning was 800 miles away in Minneapolis—way too far to drive.  It was torturous living so close to touring Broadway productions, and not being able to attend any of them, but it was pointless to spend $100 on a show that he couldn’t understand, and I would feel too guilty laughing with the rest of the audience while he wondered what hilarious joke he had just missed.

But the biggest problem, by far, was the misunderstandings.  After the “Homeless Tequila” incident, I told Brandt that he needed to get his hearing checked.  He came back from his audiologist appointment announcing that his hearing was “just the same,” and he didn’t need it tested.  I had a hard time believing it, but didn’t push the issue.  The misunderstandings continued, multiplying in frequency.

Dancing into the living room one Saturday afternoon, I excitedly shouted that I had cured my hiccups. 

Brandt looked down at the wide flares of my jeans, horrified, yelling, “You cut your pants off?!”

Driving up to Brandt’s high school gymnasium for his ten-year reunion, I asked, “Does this bring back a lot of memories?”

“Does it bring back ovaries?!” he asked in disbelief.

Talking about dinner one night, I suggested we have steak. 

“I—what?!” Brandt exclaimed.

“A steak.  You know, red meat?  Why, what did you hear?” I asked. 

“I thought you said that I STANK!”

“No, actually you smell really good!  I said steak, or really, anything that comes from a cow.”

“How about a wallet?” he asked, smirking.

And my whispered (and not-so-whispered) “I love you’s” were increasingly met with blank stares and no response.

After several painfully long moments, he would finally ask, “Wait, what did you say?”

This went on for more than a year, and I again asked Brandt to go to the audiologist for a hearing test.  Again, he came home saying it was “still just the same.”

This time, I didn’t believe it.  I held out my hand and asked for the results of his test.

“Well, he didn’t do a real hearing test.  He played some beeps, and I could hear them fine, so he said I didn’t need a full hearing test.”

I may not have a degree in audiology, but I knew this couldn’t be right.  So I asked Aunt Louise, Grandma Jean, and my friend Josie what they thought about the situation, and the response from all three was a resounding “GET HIS HEARING TESTED!” 

I sent Brandt back to his audiologist, again, and he came back without a hearing test, again, with the explanation that “my hearing hasn’t changed, my brain is just getting old now that I’m almost 30, and I can’t process sounds as fast.” 

I’d had enough.  I called to make an appointment for Brandt with Aunt Louise and Grandma Jean’s ENT surgeon, whom we affectionately call “Dr. Awesome.”  His waiting list was a year long, and no amount of name-dropping could get us in any faster.

In the meantime, I decided to educate myself as much as possible.  I became certified as a Hearing Loss Support Specialist, learning everything I could about hearing tests, disability law, and assistive technologies. 

And I started learning American Sign Language, thinking that it would help reduce our misunderstandings.  Unfortunately, Brandt was too busy teaching full-time and attending classes for his doctorate to attend ASL classes.  I decided to take them alone, and try to teach him the signs at home.  It didn’t work as well as I’d hoped, since he wasn’t actively studying and practicing the words.  The misunderstandings continued to worsen.

One night while Brandt was grading papers, I asked him, “Why are you grumbling, honey?”

With a hurt look on his face, he responded, “I’m not ugly!” 

I was a little taken aback.  “Of course you’re not ugly, you’re adorable!  I asked why you were GRUMBLING.”

“Oh!” he said, laughing.  “I’m grumbling because I’m tired, but I have to finish grading before I can go to bed.  By the way, ears SUCK!”

We started relying on text messages for grocery shopping, after talking on the phone turned into me screaming the same word ten times:

“You need me to pick up hot dogs at Kroger?…  No?…  You’re not saying ‘hot dogs’?…  It sounds like ‘hot dogs’…  Hot.  Dogs…  What do hot dogs have to do with Italian food?…  Oh, PASTA!”

And it became nearly impossible to have a conversation when he was “Earless.”  I used to simply talk louder to overcome his lack of hearing aids, but now, even if he cupped his hands behind his ears and concentrated on reading my lips, he could only get a few words.  When he started to reach for his hearing aids, I’d wave my hand and say, “Nevermind, it’s not important.  I’ll just tell you later….”

            Finally, the long-awaited appointment with Dr. Awesome arrived.  First Brandt had to have a complete hearing test; the audiologist couldn’t believe that it hadn’t been tested in six years.  I told her the story about “his brain’s just getting old” from his last doctor, and she was horrified.

Brandt sat inside a little booth, raising his hand when he heard beeps, and repeating back words.  At least, he attempted to repeat back words.

            “Hot dog,” she said.

            Uh-oh, he’s going to say “pasta,” I thought to myself.

            “Oprah?” he asked.  “I know you couldn’t be saying ‘Oprah,’ but it sounds like ‘Oprah’!”

            The next word was “baseball.”

            “Muumuu?” he asked.  “Again, I know you couldn’t have just said ‘muumuu,’ but I swear that’s what it sounded like!”

            “Cowboy,” she said.

            “‘Oprah’ again?!” he asked, exasperated.

            The results of the test were distressing.  Brandt’s hearing loss had nearly doubled over the past six years—from an average loss of 40 decibels, to 70.  And his Speech Discrimination was even worse.  He had dropped from getting 99% of the words correct, to only 24%.  I started crying, for two reasons.  First, I was devastated.  And second, I was relieved to find out that I’d been right all along.

            After the testing, we met with Dr. Awesome, who has a hearing loss himself.  He predicted that Brandt would probably go completely deaf within five years, and would be a candidate for Cochlear Implants.  For now, he was “in the Gray Area” and would have to be equipped with $10,000 worth of hearing technologies to (possibly) help him function until he becomes a Cochlear Implant candidate.  We left the appointment in shock—he was going to get a Cochlear Implant in only 5 years?  Aunt Louise was shocked as well—she thought he was already a candidate and was disappointed that he had to wait that long!

            Brandt’s beige hearing aids that fit inside his ears were replaced with powerful cobalt-blue ones that sit behind his ears.  He got a Bluetooth transmitter that sends his cell phone and other audio devices directly into the hearing aids.  And he acquired a personal FM microphone system, which can either be worn around a speaker’s neck, or placed on a table.  When I wear it, it sits right on my cleavage.  I get a lot of curious stares directed at my chest.

            I was enthusiastic about all this new stuff, sure that it would increase Brandt’s comprehension and decrease our misunderstandings.  Alas, that was not the case.  Each of the pieces of technology broke at least once and had to be sent back to the company for repairs.  We couldn’t go more than a month without having to drive in for another adjustment or repair—that’s 23 trips to Little Rock and back in less than 18 months, just for audiologist appointments.

And those misunderstandings?  Well, they didn’t get any better.  In fact, I’m positive they got worse.

Sitting on the couch watching a (captioned) movie, I yelled “Don’t move!” as I reached up to remove a stray eyelash stuck to Brandt’s cheek.

Thinking I had exclaimed “What’s that?!” instead, he quickly turned toward me, and my long fingernail jabbed him in the eye.  Luckily it didn’t do any lasting damage, but it definitely hurt him.

            When a waiter or waitress asked for our drink and food orders, I answered first so that Brandt would know what the question was.  This didn’t solve all our problems, since Brandt always nods his head in agreement when they say something, assuming that the question is “How is everything?” (even if the question was actually, “Do you need anything else?”, “Did you want dessert?”, or, once, “Do you own the black BMW in the parking lot?”  The waitress kept complimenting his fancy vehicle, but wondered why he wasn’t concerned that his headlights were on).

            We had to wait another year for Brandt’s checkup with Dr. Awesome.  One month before his appointment, Aunt Louise passed away unexpectedly.  The only thing that held me together was focusing on the upcoming appointment, and I became obsessed with the idea of Brandt getting a Cochlear Implant.

I was convinced that his hearing and comprehension had gotten worse, but the tests proved me wrong.  Despite the lack of decline, Dr. Awesome wondered if Brandt’s understanding and functioning could improve with a Cochlear Implant in his worse ear, and hearing aid in his better ear.  He sent us off for an evaluation.

            I tried to keep my expectations low, but I desperately wanted him to be approved for the surgery.  Aunt Louise’s life had completely changed after getting her Cochlear Implants—she had even started attending the Symphony shortly before her death, and could pick out each instrument being played.

            After two hours of beeps and words, it all came down to the final test:  Sentence Perception in Best-Aided Condition (wearing hearing aids).  If he scored better than 60% on the sentences, Brandt couldn’t be a Cochlear Implant candidate.  I wasn’t worried; I knew he wouldn’t do very well.  I had 5 years’ worth of misunderstandings to back me up!

            But he did do well.  Really well.  Even though he repeated each word slowly, hesitantly, and ended each sentence with, “but-that-couldn’t-possibly-be-right,” he was right.  Out of ten sentences, he only missed five words.  90%. 

The audiologist conducting the evaluation said afterwards, shaking her head, “Ok, you did a little too well on that test…WAY too well, actually.  You’re not a Cochlear Implant candidate.  Not even close.” 

The room started spinning, and I could feel the tears pooling in my eyes.  I tried to explain that there’s no way he could have done that well—didn’t she notice how unsure he was repeating the words?  And what about all those misunderstandings?! 

None of my protests made a difference.  Our long list of misunderstandings didn’t matter; all that counted was his 90% in the testing booth.  A three-minute test sent all my hopes crashing down.  We will have to wait at least a year before he can be reevaluated.

A few days later, when I’d calmed down just slightly, I asked Brandt how he felt about the evaluation.  He shrugged, and in his ever-so-calm way, said, “Eh, I’ll get a Cochlear Implant eventually.  I just feel sorry for you, having to deal with my crappy hearing.  But at least you get to keep adding to that long list of my misunderstandings!”

So we’re still stuck in the Gray Area of hearing loss, where Italian food is made with hot dogs, high school reunions bring back ovaries, and the ultimate insult is calling Brandt an ugly, stinky Homeless Tequila.

Car Shopping for the Hearing Impaired

A new town and new job deserves a new Brandtmobile!

Ok, we weren't actually planning on getting a new car for at least a year, but we didn't really have a choice. Last summer I managed to find Brandt a new job, closer to our family and closer to Dr. Awesome. He was on the cusp of finishing his doctorate and the opportunity was too good to pass up!

Fast-forward to a month ago, when both of our (older model) cars suddenly had warning lights go off. Mine turned out to be a bad tank of gas that angered my recently-replaced catalytic converter, but Brandt's was the airbag. In a car with manual locks, no cruise control, and an increasingly-loud chronic shake, it was time for an upgrade.

I hadn't been car shopping in a decade, and it was not a pleasant experience. I don't think it ever is, is it?  Being hearing impaired adds some complexity to the experience, though. I had no interest in dealing with car salesman, but talking with people on a noisy car lot was going to prove difficult.

Thankfully the experience was not as painful as I feared, but it was still tricky.  I let Brandt do the talking, but I had to jump in to 'translate' fairly often.  Standing outside next to the freeway, with the sun glaring in your face, wind whistling your hearing aids, trying to lip-read a salesman with a big bushy mustache...not the ideal situation.

The two main salesmen we dealt with were professional and understanding, and didn't pull that "my manager will kill me and my kids won't get dinner tonight, but I like ya so I'm gonna make you this special deal" crap.  They repeated things and didn't get frustrated.  But they didn't believe Brandt when he said, "Don't call me, I can't understand you on the phone and won't answer." No one ever thinks he's serious.

We quickly narrowed our choice down to a Toyota Camry (which I grew up driving) and a Honda Accord (the previous Brandtmobile). The Accord had two standard features that were awfully tempting for someone with hearing loss: a Rearview Camera, and Active Noise Cancellation.  

Our new neighborhood has a LOT of  kids who play and ride bikes in the street and in driveways, and I've been fairly concerned about either of us accidentally backing over an unsuspecting child.  Brandt probably would not be able to hear someone scream behind the car, so I was very excited about this feature. And I think it's a great safety feature for anyone, not just people with hearing loss! The Active Noise Cancellation works like noise-cancelling headphones, and the Accord was definitely the quietest car we test-drove.  Road noise, especially on the freeway, makes it much more difficult for Brandt to understand me, so any reduction in that noise is incredibly helpful to our communication.

Ultimately we had to go with the Accord.  The Camry had an optional rearview camera, and their base model was cheaper, but getting these two features standard in the base model just could not be passed up.  Hurray for a new earless-friendly Brandtmobile, with six airbags and awesome gas mileage to boot!

Nice Car!

On Friday night, Brandt and I went for a nice long walk (hasn’t the weather been wonderful?!) and then went to one of our favorite restaurants.  For whatever reason, the seating hostess always tries to seat us in the room with the sports bar.  It’s loud enough in the regular dining area, so adding the noise of 2 big-screen televisions and screaming football fans is just impossible.  The hostess always thinks it’s strange when I ask her to sit away from the bar.

About halfway through our dinner, she came up to our table and asked Brandt, “Do you own the black BMW?”  He nodded, and I knew that he thought she was asking if his meal was good.  Before I could jump in, she said “You do?  Wow!  Nice car!  Well your headlights are on…”  He smiled and nodded again.  I opened my mouth to tell him what was going on, when she again told him his headlights were on and he needed to turn them off.  I shook my head and said, “No, we don’t own a BMW, sorry…”  She looked at Brandt, confused.  “But, he said you did.”  I shook my head again.  “He didn’t hear you right.”

I turned to Brandt and explained what had happened.  “Oh, I thought you were asking if my food was ok.  It’s good!” he said.  Then I had to re-explain to the hostess that no, we don’t own the BMW and it was all a misunderstanding.

As we were leaving the restaurant, Brandt asked me, “Did you see the couple next to us?”  The older couple?”  I nodded.  “They were celebrating their anniversary!” he said.  Puzzled, I said, “I heard them order some sort of wine, but how’d you know it was their anniversary?  Did they have cards or something?”  Very proudly, he said, “Nope, I read their lips!  The man toasted ‘To another 23 wonderful years.  Happy Anniversary.’”  I was amazed!  “You can read lips that well?!  And you were eavesdropping on their conversation?!”  He smirked.  “Yep.  It keeps me somewhat connected to my surroundings!”

  

Subway

We went to Subway for a quick dinner last night, and Brandt ordered his sandwich first while I was still deciding.  One of the two girls working there asked him if he wanted his sub toasted, and he didn’t hear her.  She looked at him expectantly and he said, “I’m sorry, did you ask me something?”  She repeated the question, and he didn’t understand her.  She said it again, pointing to the toaster.  Brandt said, “TOASTED!  Yes, I want my sandwich toasted.  Sorry, I’m deaf…” 

Both girls laughed, and the one making his sandwich said, “Ha, you’re deaf.  That’s funny!”  Then she asked what all he wanted on his sandwich, and again he didn’t understand her.  She looked at him and said, “Wait, are you kidding?”  He cupped his hand behind his ear and said, “I’m sorry, I didn’t understand you…” 

Now they weren’t sure what to think.  I debated when I should chime in.  “You’re not really deaf…right?” one of them asked.  “I’m sorry?” he said, looking confused.  The two girls looked at each other, getting uncomfortable.  “You’re just playing, right?  You’re not really deaf!” the second girl said nervously. 

“No, he’s really deaf,” I finally jumped in.  “He’s not kidding, he’s deaf.”

Brandt took out one of his hearing aids and showed it to them.  They both gasped.  “Oh my lord, I am so so sorry!” one shrieked.  “Oh my god, I can’t believe I said that to you, I’m so sorry you’re deaf!!” the other said. 

He waved them off, chuckling, and said, “Oh, don’t worry about it.  I’m used to it.”

I thought it was interesting that Brandt used the word “deaf” instead of “hearing-impaired” (he doesn’t like the more politically-correct term “hard-of-hearing”).  Each term brings up different connotations and different expectations about how a person might be able to hear and interact.  Just like the choice of using “hearing-impaired” versus “hard-of-hearing,” it’s a personal choice to use “deaf” instead.  My hearing is technically impaired, although not nearly as much as Brandt; and I can interact with others—for example, the girls at Subway—much easier than he can.  So by saying that he is “deaf,” it’s a quick way to let others know that he’s probably going to have a difficult time understanding them the first time they ask a question.

“Love Hurts”

I’ve had a migraine this week (along with the constant whooshing) that is finally getting better, so tonight we went out to our favorite sushi restaurant to celebrate.  We didn’t want to sit at the hibachi tables, but there weren’t any regular seats available either.  So we ended up sitting at the sushi bar, watching the sushi chefs assemble all those delicious rolls (some of which were made with a large blowtorch!).

It was hard to hear, because there were two couples next to us who were really enjoying their beers, causing them to shout and laugh quite loudly.  There was also music playing overhead, of course, so Brandt was having trouble hearing, of course.  I was sitting right next to him, which helped some.

I try not to sing along with music, because it really bugs Brandt, but sometimes I forget.  “Love Hurts” started playing, and I couldn’t help but sing along for a minute.  Brandt looked around, confused, and asked, “What are you saying?  What’d I miss?”  I laughed and said, “Sorry, I was singing ‘Love Hurts.’”  He nodded, still confused. 

I started singing again with the last line, “Oooooooooh ooooooh, looooove huuuuurrrrttsssss!”  Brandt again looked confused, and asked, “What are you singing now?”  I chuckled; “Sorry, it’s still ‘Love Hurts.’”  This time I signed “LOVE HURTS” as I spoke.  He nodded again.  “Well, that’s better than the last song, I guess…”  I smirked; “What was the last song?”

“‘Loafers,’ you said.  Strange topic for a song.”

Ah yes, the classic 1975 hit “Loafers” by Nazareth.

Labor Day Movie

I’m back from a fabulous time at the ALDAcon in Colorado Springs!  I met a lot of amazing people, and learned a lot as well.  And I got to practice my signing, because almost everyone there signs at least a little bit!  I was sad to leave, and was actually crying along with many other people when we said our final goodbyes yesterday.  I can’t wait to attend next year, and Brandt and Josie, this is fair warning—you’re both going no matter what!  It will be in Indianapolis in late October, so we can have a nice (looong) road trip, and I’m recruiting anyone else who can fit in our car.

Unfortunately, I’m still recovering from Altitude Sickness (did you know that you can also experience bad effects when you return to low altitudes?  I found that out the hard way!), so I need another day or so to start tackling my notes.  I will also find out tomorrow whether or not my ASL Level 4 (or repeat of Level 3) class has enough people, so I might be running off to class at the last second.  I’m hopeful, but not expecting it to make…

Since today was a holiday, that meant that we could actually attend a matinee Open Captioned movie (the one day a week there is an afternoon showing in OC; the only nighttime showing is on Tuesday nights).  We had 4 choices, and I let Brandt pick.  The American is new this week and has a 61% “fresh” rating on Rotten Tomatoes, so knowing next to nothing about it, we decided to see it.  It wasn’t our style, and left us pretty confused, but, the captioning was perfect and I never heard anyone complain about it.  There were a lot of older people in the theater, and most of the actors had accents, so I imagine the captioning was a big help to many people watching.  I am very proud of the movie theater company for adding something new:  they put big laminated signs on easels outside each of the theaters that was showing an OC movie, announcing that it was captioned.  They’ve always taped little signs to the cash registers at the box office, but these new signs looked very professional.  Now if I could just get them to show captioned movies more than 2 days a week…

One of the workshops I attended at ALDAcon was about movie theater captioning, and I can’t wait to tell you all about it!
  

Another Birthday?

One of the last times the whooshing tinnitus in my right ear started up, it was right after eating at our favorite Mexican restaurant.  So after the whooshing completely went away again over the weekend, I wanted to test my theory that it was being caused by food (cheese dip and chicken fajitas—yum!).

The biggest drawback to this restaurant—and most restaurants, for that matter—is the noise.  There is always music playing in the overhead speakers, and sports playing on the flat-screen televisions.  We always bring the FM system, which helps cut out the background noise and amplify my voice, but it’s never a perfect setup. 

Someone was celebrating their birthday, which means the entire restaurant staff came out singing and clapping.  Brandt jumped and asked, “What on earth is that?!”  “Birthday,” I explained.  When we were done eating, we still had a lot of food left over and asked for some to-go boxes.  Our waiter dropped off the boxes and ran off, and I said, “I think we need to ask him for a bag.”  Brandt shrugged and said, “I don’t know, I guess you’d know better than I would.”  I’ve gotten pretty good at being able to tell when he’s mis-heard me, and I knew this was one of those times.  I furrowed my eyebrows, signaling that we were having a misunderstanding.  “Ok, what did you really say?” he asked.  “What did you hear?” I asked.  “There’s another birthday in the restaurant?  People are singing again?”  I shook my head and said, “No…I said I think we need a bag from the waiter, to carry all these boxes.”  He thought for a moment and said, “That wasn’t even close, was it?  And just how did I score a 90% on that sentence test?!”

As our waiter was clearing the plates off the table, I picked the FM transmitter up off the table and reattached it on my neckloop.  The waiter looked at it quizzically and asked me, “What’s that thing for?”  I explained that it was a microphone for Brandt’s hearing aids, and pointed at his ears.  “So, he can’t hear anything without that thing?” he asked.  “Well, a little…” I tried to explain.  We both looked at Brandt, who motioned towards his ears, shrugged, and shook his head.  “We’re talking about you!” I told Brandt. 

I’m always glad when people ask about the FM system.  I much prefer them getting educated about it, instead of just staring and whispering.  I also think it helps to dispel the myth that only ‘old people’ wear hearing aids!

And my whooshing tinnitus is still completely gone, so, I’m back to square one trying to figure out the cause…

  

Fear and Loathing of Microphones

What’s the deal with all the hatred and avoidance of microphones lately? (said in my best Jerry Seinfeld impression)

I briefly touched on this while at the National Association of the Deaf conference last month, but it was even more widespread than I initially reported.  While most of the ASL interpreters automatically used the microphones, I had to ask several of them to do so, and four of them flat-out refused to use them.  REFUSED.  I told them, “My husband is deaf, I have trouble understanding clearly, and we’re not fluent in ASL, so we need you to use the microphone sitting right over there on that table.”    And they actually refused to use them.  One interpreter even joked about it, saying, “You better sit close to me, then, because I’m not using that mic and I don’t plan on projecting very loud, either.”  We sat as close as we could, two rows behind, and of course it wasn’t close enough to hear them easily.  During a pause in the presentation, the ’terp turned sideways towards me and asked, “Can you hear me ok?” and I hissed back, “No, not really!”

We had another microphone problem when the wedding we attended in May was not accessible to Brandt.  It was an outdoor wedding and the pastor started off using the provided microphone, then quickly declared “I’m loud enough without it” because it was getting in his way, and turned it off.  Poor Brandt couldn’t understand a single word, and I struggled to understand everything myself.

I had forgotten about the issue, but then 2 weekends ago my mom went to a “Teaching with Technology” conference and encountered a similar situation (ah, the irony!).  The first man who got up to speak bragged, “I don’t need this microphone, I’m loud enough without it!”  This was in a large ballroom, with hundreds of people sitting in the audience.  Of course he wasn’t loud enough!  Where are people getting this idea?!  My mom sat there quietly annoyed, trying hard to understand his talk (she has normal hearing).  But when a soft-spoken, tiny little woman got up to speak—the microphone had completely disappeared at this point—she’d had enough.  She snuck to the back of the room and told one of the A/V guys, “You have got to get that woman a microphone!  There’s no way the audience can hear her!”  They quickly got her one, and after asking, startled, “Oh did I need one?” she asked the audience if they could hear her any better.  A collective sigh spread throughout the room.

That same weekend, Brandt was in Washington, D.C. for a different teaching conference.  With 100 people in the room, sitting at long tables, there wasn’t one single microphone.  So he had an incredibly hard time hearing what was going on, naturally, but it was too late to say anything.

Let this be a lesson!  You can never assume that there will be microphones available; and even if they are available, you can’t be sure that they will actually be used.  It’s important to let the people in charge know that everyone who speaks has to use a microphone, even if they think they’re “loud enough without it.”

So why do so many people hate using microphones?  Is it because it makes them self-conscious?  Do people hate how their voices sound on a mic?  Are they afraid of the screeching feedback that makes everyone cover their ears in pain? (ok that one I can understand, but still—get over it!)  Risking a few seconds of uncomfortable feedback isn’t near as bad as wasting your breath because no one can understand you.

  

Last Day of NAD Conference

Saturday was the last day of the NAD conference in Philadelphia, and it was busy busy busy (and long long long!).  Our first workshop was “Corporate Best Practices—Accommodations and Accessibility.”  It was a panel of 3 Deaf businessmen:  Seth Bravin with IBM, Li Ye Chen with GE, and Sacha Klein with Booz Allen Hamilton.    The panelists described the numerous accommodations that they use in their jobs, including:  ASL interpreters (in person); Video Relay Service (ASL interpreting for phone calls via video telephones); Video Remote Interpreting (ASL interpreting done remotely via a web camera or teleconferencing setup)—this is used for meetings and other situations when the Deaf client is in the same room as the people he needs to communicate with, and an in-person interpreter is not available; Real-Time Captioning; instant-messaging; e-mails; and speech recognition software.  None of the 3 panelists had ever had a problem with getting their company to pay for any of these services.  When asked how many hours a week they used these accommodations, Mr. Bravin with IBM said that he is “addicted to VRI” and uses it 15 to 20 hours a week (sometimes up to 30 hours a week) and uses VRS quite often as well.  He prefers live interpreters because they are more convenient to work with, and because he is able to always use the same interpreting company, his interpreters are already familiar with him and the terminology used in his work.  Mr. Chen with GE said that he uses VRS or interpreters about 25% of the time, and mainly uses live interpreters for large meetings.  He uses instant-messaging a lot, and because he has a Cochlear Implant, he does well speaking one-on-one with colleagues.  Mr. Klein with BAH prefers live interpreters, especially for meetings, and uses them about 5 to 10 hours a week; he also uses VRS for phone calls about 10 hours a week.  The panelists emphasized the importance of asserting your needs for accessible communication at work, and epitomized how it is possible for Deaf people to move up the corporate ladder.

We weren’t sure what to expect from “Navigating Social Media and Ethics: Code of Professional Conduct,” conducted by ASL interpreter SB Morgaine.  It turned out to be about ethical issues and ‘gray areas’ for ASL interpreters, discussing if an ethical line is crossed in such hypothetical situations as:  an interpreter ‘friending’ a Deaf client on Facebook and vice versa, an interpreter posting on Twitter that she is interpreting at a specific hospital and “is sooo bored,” an interpreter posting pictures of herself interpreting at a live concert—with the Deaf client visible, and a Deaf client ranting online about a specific interpreter.  Although this topic didn’t apply to us directly, it was very well-presented and we enjoyed it a lot.  It made us think about social media issues that apply to everyone, not just interpreters.  A more detailed blog post on this workshop was written by NAD blogger Jeannette Johnson.

During lunch, we ate at one of the restaurants in our hotel.  Everyone sitting around us was signing, so Brandt and I tried to sign a little as well.  Our waitress told the couple sitting next to us that she had learned several signs during the week, and she was proud to show off “THANK YOU” and “CHECK?”.  When she asked us if we were ready for the check, she signed “CHECK” again with a big grin on her face.  As the couple next to us left, the man taught her how to sign “SEE YOU LATER, ALLIGATOR.”  She loved learning the sign for ALLIGATOR!  When we got up to leave, the man on the other side of us asked me if I was an interpreter.  He had hearing aids and had been signing and talking with his wife (she was in the bathroom); he said that she was an interpreter and he was “learning sign and loving it—I’ve been sitting in the lobby every night this week, just watching everyone signing.”  I was surprised and said, “Oh, you can do that?!  I thought they considered that rude!”  “Sure, you can watch them!” he said.  “I was just watching the group that was sitting next to us, and they taught me a few signs.”  As we left the restaurant, he wished us luck and told me to “keep up the good work.”  How nice!

The workshop “Deafhood: The Cure for Deafness” was an Anthropologist’s dream come true!  It was given by Butch Zein, Organizing Chair for the Deafhood Foundation, which is “dedicated to achieving economic and social justice for all Deaf people.”  The vision of the Foundation is to “provide financial, educational and social opportunities to end the economic exploitation of Deaf people.  The Foundation aims to free the world from audism and recreate a society where everyone experiences full humanity and celebrates Sign Language.”  Mr. Zein explained the 5 dimensions of viewing deafness: 

• Medical, which focuses on the ear, sees “hearing loss” as a problem to be fixed, and views “hearing-impaired” people as “helpless” and “isolated”;
• Social Welfare, which aims to “solve the problems of deafness” through institutions including school and vocational rehabilitation, and views the Deaf as “clients” and “reasons for charity”;
• Human Rights, which aims for “equal opportunities” and “access,” and supports disability discrimination legislation and laws providing equal access;
• Linguistic Minority, which views audism and oralism as forms of genocide/ethnocide, and aims for bilingualism (English and American Sign Language); and
• Deafhood, which is an “all-encompassing perspective” and “holistic view” which aims to encourage “healthy self-esteem” in Deaf people, “celebrates ASL,” “recognizes and preserves Deaf peoples’ potential and desire in a collective sense,” and wants mainstream society to realize that the Deafhood perspective “has much to offer humanity, science, academy, and Deaf people now and in the future.”

Mr. Zein summarized the difference between the first and last dimension as:  The medical dimension aims to “eradicate deafness,” while Deafhood’s perspective of Deaf people is “We don’t need help, we’re just different.”  A Deaf woman in the audience came up to the front of the room at the end of the workshop and declared,

“I am not disabled, I CAN!  I am ENABLED!” 

It was a powerful, wonderful statement.

A video on the Deafhood Foundation’s website gives a detailed explanation of the creation of “Deafhood.”  Historically, deafness has been viewed “as a problem,” defined by things the Deaf couldn’t do, such as read, write, talk, and hear.  “Deafness” is a negative label that was attached to Deaf people, but is not a label that Deaf people like or “want to accept.”  Instead, they want to “turn that label around to its flip side” to one which they “will proudly wear”—Deafhood.  The video explains:

“Deafhood is the sum of all the positive aspects of us as Deaf people.  Under Deafhood, Deaf are seen as being able to do things:  Deaf can read, Deaf can write, Deaf can sign, Deaf can socialize with others, Deaf people have a community, they have a culture...  All these things are positive, and this is Deafhood.  Deafhood is about understanding ourselves as Deaf people, looking inside and examining ourselves, understanding and recognizing the oppression that has occurred over the centuries...  Deafhood is understanding that we are Deaf, not Hearing, and that it is okay to be Deaf!  We are equal in all respects to Hearing people!  Hearing people have their ways, and we have ours, and one is no better or worse than the other.  They have their language, and we have our sign language.  They have their ways of socialization, and we have ours.  They have their culture, and we have our culture.  Both are equal, and both are equally valuable.  We can socialize and get along with them, and they can socialize and get along with us.  But we recognize that we need not conform to their ways to be “equal.”  We do not need to be able to hear and talk to become equal to a Hearing person.  We can be equal to Hearing people on our own, Deaf terms.  Deafhood is about envisioning a future, a positive future for ourselves.  A future in which our academic levels are higher, our community is uplifted, stronger and more cohesive.  Our language, our signs are not deteriorating, but rather, elevated and fluent.  Economically, instead of struggling and being poor, we can raise our economic level to work together and improve our community and gain political power to lobby our government…”  

Our final workshop was “Self Advocacy: Encouraging Doctors to be Deaf Friendly,” given by Dr. Melanie Nakaji, project coordinator for the RID Oncology Program at the University of California San Diego, also called the American Sign Language, Deaf Culture and Cancer Control program.  Medical students in this program enroll in an American Sign Language course, participate in Deaf Patient Simulations, spend a month during the summer at Gallaudet University’s Summer Immersion Program, participate in Deaf cultural events, spend 10 hours with an Interpreter Mentor, and create a health education program for the Deaf community.  The main purpose of the program are for doctors to learn about Deaf culture and to understand the different perspectives of clients, including culturally Deaf, Hard-of-Hearing, Deaf with a Cochlear Implant, etc., as well as their different communication methods and needs.  Dr. Nakaji recommended the website DeafMD.org, which provides health and medical information in ASL.  “Diseases A-Z” provides explanations of a long list of medical issues in ASL videos, and “Understanding Tests” explains over 20 medical tests in ASL videos.  The website also has a database of “Deaf-Friendly Doctors” in 32 states.  NAD blogger Tayler Mayer has written a detailed summary of this workshop.

After a ‘short’ walk over to the Liberty Bell (where I almost had a heat stroke!), we ended our trip to Philadelphia with a night tour on top of a double-decker bus.  The tour guide spoke over a microphone, but the speakers were all downstairs and it was very difficult to hear him.  Even though he was standing just a few feet in front of us, I strained to understand him, and Brandt couldn’t get a word.  We quickly decided to use the FM system, and I tried to repeat as much as possible into it.  This turned into me giving brief summaries, usually just saying as quickly as possible what we were passing:  “Huge City Hall!”  “LOVE Statue!”  “Some sort of really popular fountain with people swimming in it!”  “Statue of…um…what name did he say??...ok it’s not George Washington, although it looks just like him!”  When we stopped at the Philadelphia Museum of Art for everyone to run up the “Rocky Steps,” a lady who was sitting towards the back of the bus said to her friend, “I can’t hear a word that guy is saying, can you?!”

  

Miss Deaf America

I’m not usually a big fan of beauty pageants, so I wasn’t sure what to expect going into the Miss Deaf America Ambassador Pageant.  Brandt stayed in the room, since the last-minute tickets were $80, so I sat towards the back by myself.  Several people excused themselves and asked if they could sit on my row, and I understood them perfectly.  Then a woman asked to sit next to me, and asked where I got my program.  I was about to tell her that I was still learning sign, and then realized that I had understood her!  I told her that I got it at the entrance door, but they ran out, and I asked if she wanted mine.  She asked if she could borrow it and it give it back at the end, and I said “SURE!”  Then the man in front of me asked if his head was blocking my view, and when I told him I could see just fine, he said “Good, I wanted to make sure I wasn’t blocking your view!”  These conversations all took place in ASL, and I was very excited that I didn’t have to apologize or explain to anyone that I was still learning.

The contestants opened the show by signing the national anthem, as they had done for the Opening Ceremony on Wednesday.  It was just as powerful the second time.  Then they signed the song “Dream On” by Aerosmith, and it was so beautiful.  They must have practiced a lot to be able to able to sign along to the words perfectly. 

There were 11 contestants, and they were narrowed down to 6 semifinalists who would perform their “artistic expression,” “platform presentation,” and on-stage interviews.  Miss Deaf California’s platform is Deaf Mentorship programs for youth, and performed “Overcoming Her Struggle,” her own story of overcoming childhood abuse.  If she could change one thing about the world, it would be to stop child abuse and domestic violence.  Miss Deaf Illinois, the contestant who spoke to me in the elevator on Thursday, performed an ASL poem: “Deaf Role Models from A-Z.”  Her platform is Sign Language Literacy, and when asked to tell us something to help us remember her, she said that she loves reading and teaching, and recently taught 200 Hearing students about Deaf culture.  Miss Deaf Maryland’s platform is Deaf Literacy, and she performed The Giving Tree.  If selected as Miss Deaf America, she answered that her plan of action would be to work with Deaf youth.

Miss Deaf Minnesota’s platform is Deaf Access to the Performing Arts, and she signed the song “Defying Gravity” from the Broadway musical Wicked in full dress as a witch.  One notable thing about her is that she can spell “Supercalifragilisticexpialidocious.”  Miss Deaf Missouri’s platform is Breast Cancer Advocacy, and she performed her personal story of surviving a plane crash.  Her plan of action as Miss Deaf America would be to protect Deaf rights, and prove that “everyone is a leader.”  Miss Deaf Pennsylvania’s platform is “Accessibility is Freedom for Deaf and Hard of Hearing People.”  She performed the poem “Ulysses” by Alfred Lord Tennyson, dressed as a Greek goddess.  If she could change one thing about the world, it would be “world peace!”

Miss Deaf Maryland was second runner-up, Miss Deaf Pennsylvania was first runner-up, and Miss Deaf Illinois won the title of Miss Deaf America 2010-2012!  I like to think that it was all thanks to my wishing her good luck in the elevator.

It was 10:30 by the time I got back to the room, so we went to eat at Hard Rock Café because we didn’t know what else was open nearby.  There was a live band playing, and it was so loud I couldn’t even hear myself talking.  Brandt and I tried signing back and forth, but we couldn’t have a real conversation with our limited vocabulary.  Finally, Brandt pulled out his iPhone and we had to write back and forth.  He asked me if I thought any Deaf people would ever come into the restaurant, and I said, “Why not?  A lot of Deaf people love loud music, because they can feel the vibrations.”  About that time, a Deaf couple came in and sat down next to us.  The waiter asked the man something, and he pointed to his ear and shook his head.  I wondered how anyone would be able to hear anyway, over the pounding rock music.  I noticed that everyone else was having trouble ordering their meals, too, and were giving up and just pointing to the menu.  The waiter stopped even trying to talk to us and just pointed:  to the water, to the dessert menu.  I looked over at the Deaf couple, deep in easy and effortless communication.  I couldn’t help but smile.

  

Shopping Trip Back Home

We’re back from another trip to my hometown (2 hours away) to pick up Brandt’s repaired hearing aid.  He has now had both hearing aids completely rebuilt in less than a year!  His iCom was sent off for repairs (the fifth time) and he was given a loaner.  Then in 6 weeks, Phonak is going to give him their new, updated and upgraded version of the iCom for free—that was the good news.  The bad news was that his Dry and Store hearing aid dryer still hasn’t arrived, 2 months after the clinic ordered it, because there were electronic glitches in the current batch of dryers that have to be repaired.  It’s ALWAYS something!

My mom’s apartment is getting renovated, and she needed help recycling her old computer and picking out a new kitchen light.  That meant a trip to her two least favorite places, Best Buy and Lowe’s, which she calls “big, loud stores for men.” 

Brandt lugged the computer into Best Buy and asked the employee guarding the entrance/exit where the recycling program was.  He pointed us over to Customer Service, and Brandt headed towards it.  He got about 5 feet away when the employee remembered that he needed a sticker for the computer, and yelled at Brandt, which went unheard.  “Sir!  You need a sticker for that computer!” he yelled louder.  No response.  “SIR!” he screamed.  “He can’t hear you!” I said.  I ran over to him, tapped him on the shoulder, and told him he had to go back and get a sticker.  “Why didn’t he tell me that?” Brandt asked.

After unsuccessfully trying to talk my mom into buying a Nintendo Wii and Wii Fit, we headed off to Lowe’s, remembering that we needed a new thermostat for our house in addition to mom’s kitchen light.  There were employees standing at the end of almost every aisle, and each one asked Brandt if he needed help finding anything.  The problem with this was, the store is noisy, with near-constant loudspeakers, paint shakers, lumber cutters, and all the other loud machines whose names and functions I don’t know.  And the tall ceilings and concrete floors certainly don’t help with the acoustics. 

So when Brandt walked by all these helpful employees, he was on a mission to find the thermostats and not paying attention to them.  This means that as he walked through the store, four employees in a row asked if he needed help, and he only responded to one.  The last one looked rather insulted.  My mom and I were walking a few feet behind Brandt pushing the cart, and when the accidental snub happened, the Lowe’s guy looked at me expectantly.  I pointed to my ear, shook my head, and whispered, “He can’t hear you…”  He looked a little embarrassed and nodded, then asked if we needed help finding anything.  By then, two more employees had been ‘ignored’ and I hurried to catch up.

We got to Aisle 15 and there were no thermostats to be found.  “They’re supposed to be on Aisle 15, why aren’t they here?” Brandt asked.  “Are you sure they’re on Aisle 15?” I said.  “That’s what the guy told me back there!”  “Are you sure he said 15?” I asked.  Mom and I had been talking and hadn’t heard him ask anyone.  “I am positive,” he insisted.  Almost immediately, another employee showed up to help, and told us the thermostats were on Aisle 16.  I know it’s possible that the employee told him the wrong aisle, but I have a feeling the problem was with his ears.

Brandt went through the checkout line first, and said he would go get the car cooled off.  As he walked through the exit, he set off the electronic security alarm.  It flashed and beeped, but he had already walked through it and didn’t see or hear it.  Mom was still paying for her light, and we were at least 30 feet away from the exit.  I watched, waiting for someone to politely tap him on the shoulder.  Instead, the employee standing at the self-checkout in front of the exit starting yelling at Brandt to stop, and when he didn’t, the guy called over two other employees.  “Who was it?!” one of them asked.  Several people pointed towards Brandt, and one lady yelled, “The man in the blue shirt!  He just kept walking!”  The three employees all took turns yelling “Sir!  Stop!  You in the blue shirt!  STOP!” 

I was already on my way towards the door, and starting yelling, “Hold on, he’s deaf, I’ll get him!”  They ignored me and kept screaming at him.  “He’s DEAF!  I’ll get him!  He can’t hear you!” I yelled again.  As I walked through the exit, two of the employees started to go after Brandt.  I started running, yelled “HE CAN’T HEAR YOU, I WILL GET HIM!”, and grabbed Brandt by the arm.  He swirled around and asked “What’s wrong?!”, confused at why two employees were running towards him in a panic.  I told him he’d set off the alarm and had to go back inside.  “But, I paid for it,” he said.  “I know, but the alarm got triggered.  Just let them look at the receipt.”  The employees apologized and let him go without any trouble, but there were a dozen pairs of eyes staring widely at us as we walked out of the store.  I really wanted to snap at them, but I stayed silent.

As we walked to the car, my mom whispered to me, “What if that happened with the police?”  I whispered back, “I’m worried about that.  I’ve heard of several cases where Deaf people were tasered and beaten by cops who thought they were resisting arrest.”

It’s times like these that I wish Brandt already had Cochlear Implants...

   

Captions in the City

Happy Memorial Day!  Brandt and I got to spend a nice evening out, watching an Open Captioned movie in our own (nearby) city, for the first time.

Our local movie theater company knows me pretty well, since I’ve been writing them letters and e-mails for the past 4 years asking them to provide captioning.  We lived here a full year before I even knew there was captioning available—one location in the city had Rear Window Captioning, but the only captioned movies offered were bloody horror films and stupid kids’ movies.  I kept calling and e-mailing the company, asking them to please offer something decent, but they never did.  Two years later, they completely removed the RWC system because that location had gone all-digital, and the digital system couldn’t support the captions. 

After a year of no captions, where we had to drive 2 to 4 hours away for a captioned movie, and several persistent letters and e-mails from me, the company reinstalled their RWC in a smaller theater that still used the old film system for its movies.  The theater was an hours’ drive away, and they only offered one movie per week, but it was certainly better than nothing.  With RWC, we could go to any showtime we wanted. 

But Open Captioning is still preferable to Rear Window Captioning, because it doesn’t require the user to have any special equipment.  The text is right there on the screen, and is much more enjoyable than RWC.  I bugged the company about OC (again) and they finally installed it in their biggest theater—which is only half an hour away from us—a few months ago.  Since they know me so well, they were sure to e-mail me with the news.

There were two major problems, though.  First, they weren’t offering any movies that we were interested in.  The Green Zone, The Last Song, Death at a Funeral, etc. were not our preferred kinds of movies.  The company usually offers the biggest, most popular movie in RWC on opening weekend, so the OC movies were second-rate at best.  The other problem was the timing.  They only offer OC on Monday afternoons and Tuesday nights, despite my explaining to them that this wasn’t going to be enough.  Even though they installed two OC projectors on two different screens, they were showing two movies in OC at the exact same time, only twice a week.  Weird!

Blogger Deafinitely Girly said it best, as she couldn’t attend any of the captioned showings of Sex and the City 2 in London because they were almost all offered on weekday afternoons:

“I don't understand!! Are deaf people not supposed to work or something? Is there some Government initiative that gives us the right to take paid time off to attend subtitled cinema screenings?”

Because I have ASL class on Tuesday nights, and Brandt is of course at work on Monday afternoons, today was the first time we were able to see an OC movie in our own city.  We had the choice of Macgruber, which had horrible reviews and looked stupid, or Robin Hood, which had equally horrible reviews and looked possibly-decent (and possibly-boring).  I let Brandt pick, so off we went to Robin Hood. 

The theater had signs taped on the entrance doors and all 4 ticket registers warning that the two movies would be “captioned for the hearing impaired.”  I took that as a good sign that they wouldn’t forget to turn on the captions (which has happened before).  We sat close to the exit, so I could bolt for the manager if there was any problem with it.  When the previews started, something was horribly wrong with the audio and the dialogue sounded like robots shrieking loudly.  After the third painful preview, people started getting up to complain.  I looked at Brandt, who wasn’t reacting to the screeching noises.  I asked him, “Can you hear that?”  He shrugged and said, “I can’t really understand it, no; but I knew I wouldn’t be able to.”  I explained that there was something wrong and it all sounded like robots; he said, “Oh really, the audio is messed up?  I couldn’t tell.  Good thing there’s captioning, then!”

Thankfully they got the audio fixed, and when the movie started the big yellow subtitles appeared, describing the “opening fanfare and orchestral crescendo” of the opening credits.  I did a little happy-dance in my seat, relieved that it was working properly, as most of the audience laughed at the continued descriptions of the music.

The movie turned out to be really good!  I’m not usually a fan of action flicks, but I love historical books and movies.  And while we doubted the accuracy of most of the plot, it was well-acted, the costumes were great, and the scenery was gorgeous.  There is no way I would have been able to understand all those accents without the captioning, and I bet a lot of others in the audience were thankful for them as well.