“Homeless Tequila”

Misunderstandings happen to everyone; they’re a part of life that we generally just deal with, without giving them much thought except for maybe a brief annoyance or chuckle.  However, for people with hearing loss, both the frequency and the frustration of misunderstandings are much greater, often leading to intense embarrassment and even social isolation. 

There are two types of misunderstandings: knowing you didn’t hear it right, and thinking you heard it right when you didn’t.  The second type is much worse, of course, and can cause all sorts of problems.

The worst/best/most memorable misunderstanding Brandt and I have had was about 2 years ago.  (I knew his hearing was getting worse, but “Dr. Smith” kept refusing to test it.)  I asked Brandt an innocent question when I got up one Saturday morning: “Hi honey, how are you?”  A mixture of pain and confusion pulled down his face. 

“Why am I Homeless Tequila?”

he asked in disbelief.  “What—?!” I stammered.  “Why would you call me that?” he continued.  “I would never call you something like that.” 

Another time, Brandt was doing Statistics homework and grumbled to himself.  I asked him, “Why are you grumbling, honey?”  He made a sad, insulted face and said,

“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 answered, laughing, “I’m grumbling because I’m tired but I have to finish my homework before I can go to bed.  By the way, EARS SUCK!”  I responded, “Apparently!”

A less offending one happened when we were in Brandt’s hometown for his high school reunion.  As we drove by the old school buildings, I asked him, “Does it bring back memories?”  He coughed and asked,

“Does it bring back ovaries?!”

This reminds me of the Sprint PCS commercials from a few years ago that featured “Trench Coat Guy.”  He would appear when bad cellphone service caused hilarious misunderstandings.  In my favorite of the commercials, the wife calls her husband to say, “Get a movie; you know, something old,” but the husband hears, “Get a monkey, with a cold.”  Trench Coat Guy tells the wife, “It’s not his fault, it’s the cellular static.”

In another commercial, the wife asks her husband to bring home shampoo, and instead he brings home the killer whale Shamu.  Trench Coat Guy again explains to the angry wife, “It’s the cellular static.”

This is what we’re dealing with in Brandt’s situation, too—cellular static.  In his case, there are two types of static: the literal, LOUD static that he hears all the time (tinnitus), and the “static” of hearing loss that garbles and muffles what he hears.  Both of these are caused at the cellular level, by his damaged inner-ear hair cells.

The initial reason that I decided we had to learn Sign Language was to help cut down on misunderstandings caused by Brandt’s “cellular static.”  So if he’s about to go grocery shopping and asks me, “Did you say to get grapes or cake?” then I can repeat it with both speech and sign (as soon as I learn more food signs; so far I only know APPLE, POTATO, COOKIE, and MILK).

Another big help for cutting down on misunderstandings, especially when we’re not face-to-face, are e-mails and text messages.  I don’t like having to pay for every text, but they’ve been a huge help!
  

History of Deaf Culture

In the hopes that my American Sign Language Level 3 class makes next week (though it doesn’t look good), today’s lesson is my promised history of Deaf Culture.

I am 1/8 Choctaw Indian, so when I learned the history of how the U.S. government treated Native Americans, I was horrified and personally offended.  I had the same reaction when I read the history of Deaf Culture.

The Deaf have had a long struggle to get even basic civil rights.  Aristotle and other ancient philosophers believed that learning was only possible for people who could hear spoken words, and so for almost 2,000 years, deaf people did not have any legal rights.  They couldn’t own property or get married, and were labeled as “non-persons.”  

It wasn’t until the Renaissance, in the 1500s, that European scholars and monks began teaching written words, speech, lip reading, and manual handshapes to deaf students.  Standardized sign language soon began to spread through deaf schools in France.

While Old French Sign Language was gaining popularity, another method called Oralism also starting making progress with deaf students.  Oralism, or the Oral Method, teaches only speech and lipreading instead of sign.  At the 1880 International Congress on the Education of the Deaf in Milan, a resolution was declared affirming

“the incontestable superiority of speech over sign for integrating the deaf-mute into society and for giving him better command of the language.”

Oralism swept through the deaf schools in America and Europe, and in most schools Sign Language was forbidden as it was deemed by Oralists to be “primitive” and its users “abnormal.”  Students caught signing were often punished, some even having their hands tied behind their backs to prevent them from communicating in their natural, primary language.  In the U.S., the National Association of the Deaf (NAD) was created, which argued that 

“oral communication alone was inadequate for many deaf people."

The NAD deserves much of the credit for keeping Sign Language education alive. 

Finally, in 1960, American Sign Language was declared a legitimate language of its own.  A Hearing professor at Gallaudet University (the only liberal arts university for the Deaf in the world) proved that ASL is a “unique language, separate and distinct from English,” with its own grammar and syntax.  Then in 1964, Congress issued a report that declared Oral education to be a “dismal failure,” indirectly saying that Sign Language is the superior method for educating deaf children.

Deaf culture (that’s Deaf with a “big D”) involves the shared beliefs and values of the Deaf community, namely the use of American Sign Language as their primary language.  Most Deaf people do not consider their lack of hearing to be a disability that needs to be fixed.  Instead, they view themselves as a “linguistic minority,” since they are bonded together through communicating in ASL.

The most hotly-contested issue in the Deaf-World is Cochlear Implants, which many Deaf people view as threatening their culture’s very existence and continuation.  This issue is debated in the heart-wrenching documentary Sound and Fury, which we will explore further in an upcoming post.

To be clear, Brandt is NOT culturally Deaf and in all likelihood will never choose to become so (though our local Deaf community has been very welcoming to us and other ASL students and Hard-of-Hearing people).  When he becomes fully, biologically deaf, he plans to receive Cochlear Implants and remain in the Hearing world, continuing to call himself “Hearing-Impaired”—although we will use signs to help with our communication and to converse with Deaf friends and acquaintances.

For a brief history of Deaf Culture and several forms of Sign Language, as well as an introduction to American Sign Language (with 1,400 photographs), I highly recommend the book Talking With Your Hands, Listening With Your Eyes.  This was my first book on ASL and I still refer to it often.

And for a more in-depth exploration of Deaf Culture, check out Deaf in America: Voices from a Culture and A Journey Into the Deaf-World.

“HHHHHHRRRRRRKKKKKK!!!”

About 4 years ago, a year after we had started dating, I asked Brandt a question that changed everything I thought I knew about hearing loss.  We were sitting in the living room; he was grading papers, and I was watching television.  He didn’t have his hearing aids in, and I wondered how much, if any, of the TV program he could hear.  “What do you hear right now?” I asked. 

“HHHHHHRRRRRRKKKKKK!!!”

I jumped.  “What was that?!” I yelled.  “That’s what I hear” he said, nonchalant about it.  “That LOUD?!” I asked.  “Actually, louder.  It’s been like that for as long as I can remember.  It used to keep me awake at night when I was a kid.  I thought everybody was like that; I think I was in high school before I realized it wasn’t normal.”  My mouth hung open in shock.  He shrugged and went back to his grading.  I sat there dumbfounded, embarrassed that I hadn't asked this sooner.

I thought that I was a great expert on all things hearing loss-related, since I grew up around Aunt Louise, and had been friends with Josie for several years before I met Brandt.  As far as I know, Louise didn’t have tinnitus (although she never complained about anything, so it’s possible…)  I did know that Josie was not afflicted with it.  She had told me that her Saturday morning ritual was to read the newspaper and watch TV without her hearing aids in, enjoying the complete and perfect silence.  So I just assumed that Brandt was the same way; watching him quietly grade his papers, I thought he was enjoying noiseless tranquility.  Nope, not even close.

Tinnitus literally means “ringing,” but can be perceived as a number of sounds such as buzzing, hissing, clicking, roaring, crickets chirping, beeping, whooshing, or a pure steady tone.  In Odyssey of Hearing Loss, one sufferer describes his tinnitus as:

“air-raid sirens pounding against my skull,” “ocean waves,” “loud lawn mower,” “a ton of bricks falling on a pile of church bells,” and “my brain is gurgling.”

It can be sporadic or nonstop, and ranges from a faint background noise to painfully loud and distracting.  An estimated 50 million Americans suffer from tinnitus, most of whom also have hearing loss.  It has many possible causes, including hearing loss (tinnitus is a symptom of hearing loss, never a cause), noise exposure, earwax buildup, ototoxic medication, and a host of medical disorders.  Tinnitus can be compared to a “phantom limb,” as the brain tries to make sense of the damaged inner ear and the lack of auditory input.

As I was in the middle of studying about tinnitus last summer for my Hearing Loss Support Specialist certification, I started noticing a faint tone in my left ear.  At first I ignored it, but it grew louder and more continuous, until after a few weeks it was a nonstop tone.  It sounded like the high-pitched squeal of an old television set; I couldn’t drown it out with background music, and it kept me awake and in tears every night for two weeks. 

Panicked, I got my hearing tested at Dr. Awesome’s audiology clinic.  My hearing was declared to be “within normal limits” (less than a 20 decibel impairment) except for a mild 25 dB loss at 2000 hertz in my right ear.  It wasn’t the ear that was hearing the noise, so the audiologist had no explanation.  I was desperate for an answer, a cure, or just some relief.  Brandt tried to be helpful by saying, “You’ll get used to it.  It’s annoying sometimes, but you’ll adjust.”  I screamed, cried, and threw a fit, which only made the tone louder.

I went back to my class readings, and had an epiphany.  Ototoxic medication.  About a month before the tinnitus started, my doctor had increased my dosage of blood-sugar medication.  I immediately went back to my old dosage, and two days later, the tinnitus started to subside.  After another week, it was almost tolerable.  I switched to an extended-release form of my medication, and after a few more weeks, the tinnitus was gone.  I could finally sleep in silence again.

Brandt hasn’t been so lucky.  Lately he has been waking up in the middle of the night, mistaking his tinnitus for external noises.  He’s thought it was the smoke alarm, a train, and a jet engine flying over the house.  Each time, he thinks it’s coming from a different source.  Despite this, though, he still doesn’t act like it’s a big deal.  He’s always very calm and mellow anyway, but he deserves some kind of award for dealing with this without complaint.  Sometimes he takes out his hearing aids and comments on how much better his Earless World is—

“Everything is so LOUD out there!  When I don’t have my ears in, my world is so quiet.  All I hear is my static, and it’s so nice.  When that’s all I hear, it’s easy to ignore it, and it’s very peaceful.”

When he says this, all I can think is ‘How on earth can “HHHHHHRRRRRRKKKKKK!!!” be peaceful?!’
  

Accessible Events

One of my favorite blogs, Offbeat Bride, has a post on how to make a wedding accessible to Deaf and hard-of-hearing guests.  The suggestions in the article include: reserving a seat up in front, giving a printed copy of the sermon/vows, and providing a Sign Language interpreter.  Other possibilities that the article does not mention are oral interpreters and CART reporters. 

An oral interpreter faces the Deaf/hard-of-hearing person and mouths what is being said.  Since only 30-35% of speech is visible on the mouth, speechreading/lipreading is a difficult skill to master.  Aunt Louise was a champion lipreader; I did not realize until my Hearing Loss Support Specialist classes that it was so difficult, since she made it look effortless.  I remember attending my cousin’s (Louise’s daughter’s) college graduation when I was in junior high, and Louise hired an oral interpreter for it.  She sat facing Louise, off to the side so Louise could still see the stage, and mouthed the ceremony.  After mouthing about two-dozen graduates’ names, Louise told her, “You don’t have to say all their names, just tell me when my daughter’s name is called.”  I laughed as the interpreter gave a relieved little smile. 

Louise also used an oral interpreter for church every Sunday.  The interpreter was a member of the church who would attend the early service, then interpret the second service for Louise.  A few years after getting her Cochlear Implants, Louise decided that she wanted to rely on her renewed hearing instead of the interpreter.  She loved the freedom of watching the choir and pastor, and hearing them, instead of focusing her attention on an interpreter.

CART reporting—Communication Access Realtime Translation—was unknown to Brandt and me until the HLAA convention last June.  CART is live (realtime) captioning performed by a certified court reporter on a stenotype machine.  The text is displayed either on a projector screen (visible to a large audience) or an a netbook computer (visible to the person holding it).  This is the same basic technology used for Closed Captioning on television.  At the HLAA convention, everything was captioned—the workshops, the ceremonies and presentations, even the socials.  It was wonderful!  Brandt took the picture below at the start of one of the workshops; the projector screen on the left was for the speaker’s PowerPoint slides, and the screen on the right was the CART captioning.  You can see the CART reporter’s stenotype machine and netbook in the foreground.

Even with all this technology, and all my knowledge about making public events accessible to Deaf/hard-of-hearing people, I fell way short when it came to Louise’s funeral.  Granted, I was in so much shock I could barely stand, but I was aware enough to know that we had to get an ASL interpreter.  At Louise’s mother’s (my great-grandmother’s) funeral, there had been both an ASL interpreter and an oral interpreter, for Louise and her Deaf/hard-of-hearing friends. 

I heard my cousin on the phone arranging for an ASL interpreter, which was a huge relief.  But I didn’t think about a CART reporter until it was too late.  We were trying to make all the arrangements on a weekend, with the funeral on Monday morning; by Sunday afternoon, when I realized that Brandt and the other Hard-of-Hearing, non-signing people would need captioning, I knew we’d never be able to pull it off in time.  Since I wasn’t immediate family, and they had more than enough to deal with, it didn’t seem like something I could burden them with.  I didn’t know any CART reporters in town, and it was a Sunday afternoon so contacting the agency would probably be impossible (so I didn’t even try).  Then there was the setup at the church—I knew they had large screens where they displayed song lyrics, so theoretically it should be pretty easy to do, but who would do it?  The pastor didn’t attend the Sunday evening visitation; I had been hoping to ask him then.  So I gave up without even making an attempt. 

At the funeral, the family had the choice of sitting on the far-right side of the chapel in front of the pastor, or on the far-left side in front of the ASL interpreter.  In retrospect, we should have sat in front of the pastor so Brandt could see him.  But I wanted to sit in front of the interpreter, so we did.  A number of Louise’s Deaf friends were signing along with “How Great Thou Art” when we sat down.  It was so beautiful.  Watching the interpreter was comforting and calming for me.  I recognized a lot of the signs, and learned a few new ones.  Afterwards, I asked Brandt how much of the pastor he’d been able to understand.  

“My usual, about a third.”  

I cringed.  We talked to the pastor out in the lobby, and he already had a list of people who wanted an e-mailed copy of his script from the funeral.  Several more came up to him as we talked, saying they hadn’t been able to hear what he’d said and needed his notes. 

I was mortified.  Here I am, the goddaughter of a tireless advocate for people with hearing loss, carrying her name and (I hope) her legacy, and I didn’t do a thing to help them understand her eulogy.  I didn’t even think to ask for a copy of the pastor’s notes beforehand.  Their last memory of Louise is of her inaccessible funeral, where they were only offered an interpreter for a language they don’t know.  And while that’s par for the course to Hard-of-Hearing people, this time more than any other, they should have had equal participation.  It’s a hard, embarrassing lesson, but one I will surely learn from and never forget.  I can only hope that they get the funeral script from the pastor.  I’m still waiting for my copy.
  

What’s ‘Utterly Absurd’ and Gets in the Way?

The answer is: MUSIC!  Brandt hates music.  He doesn’t understand music.  He’s annoyed by music.  He can’t hear over background music.  Really, he just plain hates it.

It was hard for me to fully understand this hatred of music when he first told me.  I thought he was being sarcastic, or at least a little over-dramatic.  Nope, he really really hates it.  This was hard for me to comprehend, because music has always been a big part of my life.  Isn’t a big part of most people’s lives?  If you hear your favorite songs from elementary school (New Kids on the Block) or from your Prom (Goo Goo Dolls), it takes you back.  It gives you a way to connect or reconnect with people.  I played '90s music at our wedding reception in honor of my bridesmaids (friends since high school).  I never would have survived Comprehensive Exams without listening to Linkin Park over and over.  I have great memories of attending Aerosmith and Third Day concerts.  So it’s difficult to imagine hating music in any and all forms.

Brandt initially explained his dislike of music simply: “It gets in my way!”  That I could understand.  If there is loud, annoying music in the background, he can’t hear over it.  So I stopped listening to it in the car unless I was alone, and I learned to ask others to turn off the music playing during their dinner parties.  But it’s hard to escape all music all the time.  We were in Kroger the other day, and “Hungry Eyes” was playing on the speakers overhead.  Without even thinking, I started singing along (while wearing the FM system).  Finally, poor annoyed Brandt asked me to stop singing and I apologized, saying I was singing along with the music and didn’t realize I was doing it.  He asked, puzzled, “There’s music playing? I thought that was just random loud noise.  I don’t understand how you Hearing people can like music…”

He commented once, a few years ago, that he wondered what kind of music he would like if he could actually understand it.  It was a very sad moment for me.  How do you answer that? 

I was surprised when we went to the HLAA convention last year that just about everyone else there LOVED music.  At the opening-night social, they set up karaoke.  LOUD karaoke.  I could barely hear anything over the booming music, and finally asked Louise, “how can anyone hear each other?  It’s SO LOUD!”  “Is it?” she asked me.  “I think it’s wonderful!”  Brandt and I finally had to leave; he couldn’t talk to anyone, and my ears were ringing.  We both though it bizarre that a roomful of deaf and hard-of-hearing people were having so much fun singing.  I knew that Louise had always loved music, and played the piano and clarinet before losing her hearing.  She even directed the children’s choir at her church for many many years, after becoming deaf.  Josie, also, enjoys music and has an extensive collection of CDs and iTunes playlists.  I find this fascinating.  Brandt finds it annoying.

This past weekend, we had Saturday Night Live playing in the background while Brandt was writing a paper and I was reading a book during the commercials.  I muted the musical guest, MGMT, because I could tell just by looking that Brandt would hate them.  To my surprise, he looked up and started reading the captioning for their song “Brian Eno.”  He read silently for a minute, then said, “You know, when you can’t hear the music and you just read the words, it’s utterly absurd.”  I laughed, then started reading myself; and I quickly agreed with him.  “Um, yeah, this is absurd.”  He continued, “They’re trying to make themselves out as philosophical sages, but they’re really just spouting stuff.”

You be the judge*:

All the space left for you
If the sky was synthesized
You’d probably know
He taught me many things
The wisdom of bleak stratagems
The prophet of a sapphire soul
Presented through creative freedoms
…He promised pretty worlds
And all the silence I could dream of
Brian Peter George St. John
When I tried to humanize by ambient light
Dipping swords in met force yeah,
But what does he know
He’s going to the whole world behind him
Here’s Brian Eno

* this is what our Closed Captioning said the lyrics are.  And when I actually listened to the song later, it was rather catchy; just reading the words is an entirely different experience though.

  

One Small Step for Netflix

How about some almost-good news?  Netflix has FINALLY introduced captioning/subtitles on their Instant View feature.   The announcement says that it’s only available on 100 titles right now, and suggests that we try watching the first four seasons of Lost.  Roughly 25 episodes per season…4 seasons…hmm, that equals about 100 captioned titles.  Titles that are already available captioned for free on Hulu.com (and includes Seasons 5 and 6).  So there’s still a looong way to go.

Josie and I have been complaining about the lack of captioning on Instant View for years, pretty much since the feature first became available.  “Where are the captions?!” we repeatedly asked each other.  We sent e-mails asking that question, and finally the answer was added to their FAQ page: 

Foreign-language movies watched instantly on your PC will have subtitles. We don't currently provide Closed Captioning, nor subtitling of English language movies, but you’ll find those on most of our DVDs.  

Gee, thanks for telling us.

I’d finally had enough, and last February I sent letters to Netflix’s Public Relations department, Chairman/President/CEO Reed Hastings, and Chief Marketing Officer Leslie Kilgore.  A month later I received a reply ‘on behalf of’ Ms. Kilgore: 

Although we don’t currently have an ETA, providing Closed Captioning on titles available for instant viewing is something we hope to include in future versions of our instant watching feature.  

Vague, and didn’t promise anything. But, shortly afterwards Netflix updated their FAQ: 

Foreign-language movies streamed to your PC, Mac, or TV have subtitles “burned in” to the video (“open captions”). However, we do not currently provide closed captions or subtitles for English language movies when streamed, although you can find them on most of our DVDs. The technologies we use for streaming do not yet adequately support closed captions, and most viewers object to permanently visible open captions, which they cannot turn off, burned into the video stream for English-language content. We are working on delivering closed captions or optional subtitles in a future technology update, probably first for PCs and Macs, probably sometime in 2010, and later for various TV-connected devices as new firmware can be created and the devices updated.

The timing of this is great, since THREE of Brandt’s documentaries this month didn’t have subtitles available.  And although I’ve never gotten into Lost, I did watch the Pilot episode just to test out the captioning.  It’s a good size and easy-to-read yellow font, so no complaints there.  Unfortunately I like to watch Instant View through our television’s Window’s Media Player setup, to keep my laptop freed up, and the new captioning only works on Macs and PCs.  So again, looong way to go.  But it's a decent first step, Netflix.  Now keep it up!

Louise’s Legacy

It is with great sadness and lingering shock that I announce the most tragic of news. My greataunt, godmother, namesake, mentor, and inspiration has passed away unexpectedly at the age of 71. Louise was a tough yet selfless woman who taught me, in both instruction and example, to “never, never, NEVER give up!” She was tirelessly devoted to her family, friends, church, community, and people with disabilities.

Louise lost her hearing two months shy of her twentieth birthday, from a single shot of the “wonder drug” antibiotic Streptomycin. For the rest of her life, she devoted considerable energy to advocacy for the D/deaf, hard-of-hearing, and others with disabilities. She served for many years on the Governor’s Commission for People with Disabilities and was honored as the State Volunteer of the Year. One of her many accomplishments was helping to found and implement our state’s Relay Service, a telephone service for the D/deaf and hard-of-hearing—one of the first in the country. Louise was the State Coordinator for the organization Self-Help for Hard-of-Hearing People/Hearing Loss Association of America from 1991 to 2007. In 2004, she became the first adult in our state to have bilateral cochlear implants, and had recently rediscovered her love of the symphony. She was frequently called upon to speak to students and faculty at local colleges and universities, delivering her last talk just two days before her death.

Louise’s husband of 53 years, Bill, showed me through example how to be a loving, devoted Hearing Spouse. Though the short fuse on my temper makes me unable to ever duplicate his unwavering patience, the love and devotion between them is something I will always strive to emulate.

To say that I am devastated is, of course, a gross understatement. I had only just begun the interviews with Louise for my book, and since I had just launched this blog a few days ago (and Louise’s internet had been out), I had not been able to tell her about it yet. She was ecstatic to be working with me on this project, and saw Brandt and me as the leaders of the next generation’s advocacy for the Deaf and Hard-of-Hearing. At her visitation and funeral, I talked to a number of her Deaf and Hard-of-Hearing friends and colleagues (I was so exhausted and stunned, my signing skills were practically non-existent; however, I was able to pull off a little conversation). They told me that it now falls on my shoulders to carry on Louise’s legacy. No small feat, a challenge that I will surely never fulfill, at least not completely, as who could pick up the torch of a legend, Superwoman, the ultimate Steel Magnolia?

But I have her name, and I have her passion. And I think that’s a pretty good start.