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.

  

Angry at Netflix (AGAIN)

I take back the small praise I gave Netflix for starting to caption a few of their Instant View titles.  Now I’m back to being angry at them and seriously debating whether I should cancel my subscription and switch over to using the Red Box $1/day/DVD system at our local Kroger.

When I got up today, I saw a red Netflix envelope sitting in front of the door to our garage, ready to go out with the mail.  I was glad that Brandt had finally gotten a chance to watch his movie, Enron: The Smartest Guys in the Room, which he’s had for over a month.  We have a ‘family plan’ on Netflix, where I get 2 movies at a time and Brandt gets one.  Since he isn’t usually a fan of blockbuster, Hollywood films, he almost always gets documentaries.

I asked him how he liked it (I’d seen it with my mom when it first came out, and thought it was wonderful).  He said,

“I watched the first 10 minutes and gave up.  It only has subtitles in Spanish.” 

This made me SO MAD, because this is the FOURTH time in just three months that he’s gotten a documentary that wasn’t subtitled. 

So I went to the Netflix website to look up whether they actually say that there are no English subtitles on the Enron movie.  Under “DVD Details,” it doesn’t even mention subtitles.  However, for details of the Blu-Ray version, it lists “Subtitles: Spanish and English SDH” (Subtitles for the Deaf and Hard-of-Hearing).  This made me even angrier. 

And to make matters worse, the movie is available on Instant View for free, but since there are only 4 seasons of Lost currently captioned on Instant View and nothing else, Brandt had to order the DVD to get captioning.  Which it didn’t have! 

I went back to some of the other documentaries that weren’t subtitled, to see whether Netflix listed the lack of them.  For The Right Stuff, it claims that there are subtitles in English, French, and Spanish, although there actually weren’t any.  Brandt was able to watch it by listening through wireless earphones plugged into the speakers, and “could understand most of it.”  And for The Eyes of Tammy Faye, he could understand it pretty well through the earphones as well.  At least for that movie, Netflix listed “Subtitles: None.”

Brandt tried watching the Enron movie with his earphones, but couldn’t understand any of it.  I tried to report a problem with it through my account, but it only gave me 7 options and of course “lack of English subtitles” was not one of them, and they don’t have an “Other” where you can write in your specific problem.  So I selected “DVD is damaged, scratched or unplayable,” then opened up the envelope and stuck a very angry Post-It note in with the DVD, demanding a refund for the movie.

Since Netflix no longer allows any sort of Customer Service contact over e-mail, my choices are to either call (which I HATE because I have trouble understanding a lot of people over the phone these days), or writing a letter which may or may not ever reach its intended target.  I think I’ll try writing a letter first.  I’m also going to write to Magnolia Home Entertainment, which produced the DVD, and ask them why on earth they didn’t include English SDH subtitles. 

  

Dr. Awesome’s Big News

Brandt had his annual appointment with Dr. Awesome on Monday, and not even a kidney infection could keep me from the 2-hour drive back to my hometown for this!  Last year, at his first appointment with Dr. Awesome, Brandt found out that his hearing—and especially his Speech Discrimination—was deteriorating much faster than he’d realized and would need to get Cochlear Implants (CI) in 5 or 6 years.  He was “in the gray area” of Cochlear Implant candidacy, so Dr. Awesome suggested waiting a few more years before getting evaluated for CI.

Over the past year, I could tell that Brandt’s hearing was getting much worse.  He’s been sleeping through his alarm (he really needs to get a vibrating alarm clock!) and keeps waking up in a panic thinking there’s a plane flying over the house (it’s actually his tinnitus).  So when Dr. Awesome looked over his audiogram from 3 months ago and said, “Well, your hearing hasn’t really declined since last year, that’s good,” I jumped in and explained that it actually has.  He agreed that “hearing on paper isn’t always the same as it is in practice.”

Dr. Awesome thought for a second and said,

“I think I just might send you over for a Cochlear Implant evaluation.  You’re borderline, especially since your hearing loss isn’t all that bad, but your Speech Discrimination is so low, I honestly think you’d do much better with an implant.” 

I started dancing in my chair.  I could barely concentrate as Dr. Awesome told Brandt about the new research on the benefits of “bimodal stimulation”—using a Cochlear Implant in the worse ear and hearing aid in the better ear.  If he passes the evaluation and there aren’t any problems with his CAT scan (and the health insurance approves the surgery!), he could be implanted in 6 to 8 weeks.  Weeks.  The room was spinning.  My lower lip kept trembling and I was holding back tears.

I was almost-crying for 3 reasons.  First, was the excitement and relief at the thought of Brandt hearing better.  To be able to participate in group conversations, understand dialogue in a movie, possibly even listen to music without hating it.  To continue teaching without as much worry about understanding his students.  To rejoin The Hearing World (I have doubts he was ever fully in it before).

Another reason:  my immediate thought was, “I can’t wait to tell Aunt Louise!  She’ll be SO EXCITED!!”  And then I remembered that I can’t tell her.  I always thought she’d be sitting next to me in the waiting room while Brandt is in surgery.  That she’d give me advice when he’s having a “Bad CI Day,” and give him tips on how to adjust to everything sounding different.  It’s hard for me to imagine going through this process without her, especially since we wouldn’t be here at all if it hadn’t been for her constant insisting that Brandt’s life could change for the better if he’d go see Dr. Awesome.

And third, was sheer terror.  The CI surgery itself has some risks, and Brandt has never undergone any kind of surgery before (he doesn’t even have wisdom teeth!).  There’s an 80% chance his tinnitus will be erased, but in a few people, the surgery makes it worse.  And with as many problems as Brandt has had this past year with his new hearing aids, iCom, and FM system (the iCom broke again on Monday in the clinic—his FOURTH iCom in 8 months, and his hearing aid had to be sent off to the company to be repaired AGAIN—it was just sent off 3 months ago), it’s scary to think about what would happen if his Cochlear Implant processor had a bunch of technical glitches. 

The implant surgery wipes out ALL residual hearing, which is why someone’s hearing loss needs to be quite significant in order to be a candidate.  For someone who isn’t completely deaf—and not even severe-to-profoundly deaf yet—it’s a lot to give up.  Brandt’s hearing loss in his left, “worse” ear is only 70 decibels, which is usually at least 10 to 15 decibels less than what he’d need to be a CI candidate.  So going from a 70 dB loss to a COMPLETE loss (over 120 dB)—that’s huge.  He’s going to go deaf anyway, at some point, probably in less than a decade.  But the natural decline is much much slower than a sudden removal of ALL incoming sound.

Although I have been desperately wanting Brandt to get a Cochlear Implant for the past 3 years, by the time we arrived back home, I was having second thoughts.  When I went to sleep, I’d almost completely changed my mind.  I wanted to take it all back.  I wasn’t ready, it was too big a step, too much to think about.  Without Aunt Louise, my mentor and guru of All Things CI, how could I handle this?

Now, three days later, I’m not as freaked out, but still not ready either.  I know that it will have to happen eventually.  It’s an inevitable necessity.  But I’m worried that it’s still much too soon, that my initial enthusiasm was premature.

We know that it will be at least a year before Brandt could logistically get the surgery.  He will graduate with his doctorate next May (we hope!), which would not be possible if he got implanted this year.  He will have to arrange his schedule so that he doesn’t teach next summer—trying to teach several classes this Fall while adjusting to a CI would be impossible as well.  And it could very well take all of the next year to convince his health insurance company to cover it.  The ideal time for surgery would be late May to early June of next year.  So there’s time for us to fully prepare, if he does end up getting approved this year.

But I’m still scared.

  

Video Series from HLAA

The Hearing Loss Association of America (HLAA) has created a series of 7 captioned videos on hearing loss.  The topics of the videos are:

• Hearing Loss Basic Facts
• Hearing Loss Symptoms
• Hearing Loss Diagnosis
• Hearing Loss Treatments
• Living with Hearing Loss
• Hearing Loss Causes and Prevention
• Hearing Aids, Cochlear Implants, and Assistive Listening Devices

HLAA says about the new video series:

“Information you need to be adequately briefed on the topic is all in one place in an easy-to-access format. If you think you have a hearing loss or know someone who does, please point them to the videos where hearing health care professionals and people with hearing loss talk about what you can do about it.”  

Here is the first video in the series, “Hearing Loss Basic Facts”:

The HLAA website also has a series of factsheets.  Topics include Information and How to Get Help, Hearing Aids, Cochlear Implants, Baha (Bone-Anchored Hearing Aid, for conductive hearing loss), Assistive Technology, Telecommunications, and a Glossary of terms related to hearing loss.

  

Love Is...

Brandt and I just got back from a really neat Scottish wedding.  Unfortunately (but not surprisingly), Brandt couldn’t fully appreciate it.  It was an outdoor wedding, and I knew he was going to have a lot of trouble hearing the ceremony.  I tried to get him to sit close to the front, on an aisle seat, so he could possibly hear better, but he didn’t want to take the good seats away from family members (he’s too nice sometimes!)  There was a glimmer of hope when the pastor started out using a microphone, but he quickly discarded it because it was getting in his way and he declared, “I’m loud enough without it!”  No, he wasn’t; not enough.  Brandt missed all the funny moments, looking around confused when everyone in the audience burst into laughter.  I felt so bad for him…

The bride and groom had a handfasting (traditional Scottish practice of tying ribbon or cloth around the couple’s hands), which I have seen on Offbeat Bride but hadn’t seen in person before.  At the end of the ceremony, a man dressed in full Scottish garb surprised us all by playing a bagpipe. 

At the reception, while the bridal party was still taking pictures, we got to play with colored pencils.  Everyone got a sheet of paper with a bunch questions to fill out.  There were basic questions like “How far away did you travel from?,” “How did you meet the bride or groom?,” and “What is your favorite memory of the bride and groom as a couple?”  Brandt and I had fun answering “How many children do you think we will have?” (we said “19”) and “What will their names be?” (we listed 19 types of herbs—Basil, Rosemary, Cinnamon, Peppermint, etc).  For “What is one piece of advice for the newlyweds?,” I said “separate bathrooms!!” and Brandt said “always play Nintendo Wii in cooperative mode only!” 

We had trouble thinking of a funny answer for “Complete the phrase: ‘Love is…’”  All I could come up with was, “Love is SUPER-COOL!”  Brandt has been mis-hearing me a lot lately (more than usual—one of his hearing aids isn’t working right and has to get looked at next week), and today was particularly bad.  So he wrote down,

“Love is… like superglue.”

Then he looked off in the distance, thinking hard about how to explain it, and continued writing.

“It sticks you both together pretty strongly, with an almost unbreakable bond.”

He was very proud of himself, and I was quite impressed that he came up with something so profound based off a misunderstanding.  He told me, “Great suggestion!  That worked out well!”  

  

Sean Forbes: Deaf Rapper

What could be more ironic than a Deaf rapper?

28-year-old Sean Forbes has been profoundly deaf since he was a baby.  His parents are musicians, and he grew up loving the low-frequency bass of drums and hip-hop music.  In 2006, Sean co-founded the Deaf Professional Arts Network (D-PAN), which remakes music videos of popular songs using ASL, including Christina Aguilera’s “Beautiful” and John Mayer’s “Waiting on the World to Change”.  (Unfortunately these videos aren’t captioned, but subtitles are available on D-PAN’s DVD of these and more music videos.)

Sean recently signed a contract with the recording label Web Entertainment, which launched the career of rapper Eminem.  His first single, “I’m Deaf,” features Sean singing in English while simultaneously signing in ASL.  It is available for digital download on iTunes, and the CD (and t-shirts) can be purchased on Sean’s website.  The video for “I’m Deaf” is below, and I personally think it’s awesome.  Even Brandt, who usually hates music, said it was “very interesting”—which is high praise coming from him!

If you’d like to see more about Sean, there is a great captioned news report about him (although they should have said “Deaf/Hard-of-Hearing” instead of “Hearing-Impaired”!)

  

Better Hearing and Speech

May is “Better Hearing and Speech Month,” the time every year (since 1927!) that the American Speech-Language-Hearing Association (ASHA) encourages Americans to get their hearing tested.  An estimated 36 million Americans have hearing loss, and the average lag-time from recognizing a possible impairment to getting hearing aids is 6 to 7 years!

Signs of hearing loss in adults include:

• Frequently ask people to repeat themselves
• Often turn your ear toward a sound to hear it better
• Understand people better when you wear your glasses or look directly at their faces
• Lose your place in group conversations
• Keep the volume on your radio or TV at a level that others say is too loud
• Have pain or ringing in your ears
• Notice that some sounds remain clear (often low-pitched sounds such as the bass line in music) while others may seem fuzzy (frequently women's and children's high-pitched voices). 

In children, typical signs of hearing loss include:

• Inconsistently responding to sound
• Delayed language and speech development
• Unclear speech
• Sound is turned up on electronic equipment (radio, TV, iPod, etc.)
• Does not follow directions
• Often says "Huh?"
• Does not respond when called
• Frequently misunderstands what is said and wants things repeated

If you suspect that you or a loved one might have a hearing loss, get it tested as soon as possible by a certified audiologist.  If for whatever reason that audiologist refuses to take your concerns seriously or check your hearing (that means a complete hearing test—where you sit in a soundproof booth, listen to tones, repeat back words, and have your eardrums tested), then go to another audiologist.  If you believe that you, your child, or other loved one has a hearing loss, it is well within your right as a patient to seek a second opinion and to receive complete testing from a certified professional.

Speech and language problems can occur without a hearing loss.  If you suspect that your child might have a problem with their speech and/or language, they should be evaluated by a certified speech-language pathologist.  Signs to look for include:

• Stuttering
• Articulation problems ("wabbit" instead of "rabbit")
• Language disorders such as the slow development of vocabulary, concepts, and grammar.
• Voice disorders (nasal, breathy, or horse voice and speech that is too high or low)

Stem Cell Breakthrough

There is promising news in stem cell research for people with hearing loss.  Heller Laboratory at Stanford University is reporting that after 10 years of work in their lab, they have

“found a way to develop mouse cells that look and act just like the animal's inner-ear hair cells—the linchpin to our sense of hearing and balance—in a petri dish.”

This is a huge step towards being able to restore hearing naturally in people with damaged inner-ear cells.  As I have written about before, birds are able to regenerate their damaged inner-ear hair cells so they are never rendered permanently deaf, but mammals do not have this ability.  Researchers studying chicken cochlea realized that if they could use stem cells to regrow the hair cells in the cochlea of mammals, then they could work towards restore hearing in people with hearing loss.  Today, we’re one step closer!

This is what Brandt had been hoping for (and counting on) for many years, before we found out last year that his hearing would be gone long before stem cell therapy would be available.  Although we are excited that Cochlear Implants are a viable option to replace his hearing soon, we’re still hopeful that he can someday experience real, natural hearing through stem cell therapy.  (It would also require gene therapy—tracking down which genes are damaging his hair cells and ‘fixing’ them—but we won’t worry about that right now…)

I can’t help but wonder what the reaction will be in the Deaf community.  One of the arguments I have heard from the Deaf against Cochlear Implants is that it does not restore natural hearing, it ‘merely’ replaces hearing through digital codes that stimulate the auditory nerve.  The CI user, so the argument goes, is still deaf—once the CI processor is removed, they still can’t hear anything (the surgery wipes out all residual hearing).  And since the processor provides a computer’s digital rendering of sound, it is not the same as ‘real’ hearing.  It often takes many, many months for the CI user to learn how to hear with the implant.  There are also risks with the CI implantation surgery itself to consider. 

Stem cell therapy, however, would actually provide real hearing—and undoubtedly without near as much risk.  So while this is wonderfully promising news for the millions of people with hearing loss who want their natural hearing back, it may well push Deaf culture closer to the brink of extinction.  It’s a dilemma I’ll leave to explore another day; and we’re still several decades (at least) before stem cell therapy would be available for the general public.  But it is an issue that will become a reality soon enough, and something that will affect our children and grandchildren if it does not fully affect us.

  

Letters to Juliet

Brandt survived the semester!  He’s now just one year (2 classes and the dissertation) away from being DOCTOR Brandt. 

So to celebrate, he took me out to see a chick-flick last night.  The reason we saw a chick-flick was because our local movie theater chain only shows one movie per week in Rear Window Captioning, usually the biggest opening movie, and this weekend it was Letters to Juliet.  I told him we didn’t have to see it, because I knew it would be really sappy and he’d probably fall asleep halfway through, but he insisted.

The large group of teenage girls in front of us couldn’t figure out what our RWC viewer panels were, and asked each other, “Do we need to get those?  What are they for??”  Finally the leader of the group asked me, and I told her it was for the captioning that was projected from the back of the theater.  I pointed to the big LED screen in the back.  They all looked at it, tried to read the backwards letters, and were still confused.  One of the girls whispered, “I think it’s for Deaf people…”  They all nodded, then looked back at me, puzzled.  I know they were thinking something like, ‘But they’re talking, how are they Deaf?’  I didn’t elaborate and they didn’t ask anything else; it was more fun to keep them confused (I was a teenager once, too—sometimes they need to be reminded that they don’t know everything!)

The theme song to Letters to Juliet, “Love Story” by Taylor Swift, was the first song I ever saw translated into ASL on YouTube (see below).  The signer is Ally, a Deaf Education student.  She says:

“I strongly believe that music should be widely accessible to the Deaf and Hard of Hearing, just as it is to Hearing.  For this to be possible, it is essential that the music and lyrics are both signed using accurate ASL structure and features.”

This was about a year and a half ago, when I had first become interested in learning Sign.  Watching the video was extremely overwhelming, because the signs were flying by so fast and I didn’t know any of them.  I knew I’d never be able to sign like Ally, but I worried that I’d never even be able to understand what she was signing.  Happily, I can now watch this video and know most of the signs.  Keep in mind when you watch Ally’s videos, she is interpreting in ASL—it is not word-for-word English, it is a different grammar and syntax, and often the words/signs themselves are different.  (Unfortunately she does not provide captioning to show what the song’s lyrics are versus what she is signing, but on some of her videos she provides an explanation of how to sign the song, such as “Just to See You Smile”.)

Ally has a lot of videos, and I recommend them as a great way to see ASL in action.  If you would like to see ASL songs with the lyrics and actual signs (the “gloss”) captioned, check out “CaptainValor” on YouTube.  His video for Miley Cyrus’ “Party in the USA” is very well done (although the song will probably be stuck in your head for the next week!) and provides both the lyrics and the gloss (the signs he is performing) underneath in ALL CAPS.  My favorite video of his is “I Gotta Feeling” by the Black Eyed Peas (another one that will get stuck in your head).  This one doesn’t have captioning, but if you expand the description under the video, he has the lyrics and gloss written out.

  

Frost/Nixon/Chorost

Last weekend, I got to see the play Frost/Nixon with my mom because someone in her season-ticket group had to cancel.  This was the second time I’d seen it; the first time was a very momentous occasion.

Brandt has a national conference that his school sends him to every year, and I always get to tag along.  Last year we were in Las Vegas, and two years ago we were in Washington, D.C.  A few months before the D.C. trip, we were complaining to Aunt Louise about the complete lack of anything captioned in our nearby Big City (we just got captioned movies last summer).  I asked her if there was such a thing as captioned theatre, and she said it unfortunately did not exist.  On a whim, I Googled “live theatre captioning,” and to my delight, I discovered the nonprofit group Caption Coalition, which captions live theatre [their website www.c2net.org is currently down]. 

Louise was thrilled to find out that captioned theatre exists; however, the closest showing to either of us was a good 800 miles away.  It’s all over the Northeast, West coast, and Florida, but nowhere in the middle of the country.  However, Brandt and I were going to D.C. soon, and the Kennedy Center for the Performing Arts  had a captioned performance during our trip.  We had never heard of Frost/Nixon, and figured it would be really boring.  But we wanted to experience captioned theatre, so agreed to give it a try.  I ordered seats down in front of the 4-feet-wide LED screen, and got a $100 discount on the tickets because it was in the ‘special needs’ section!

When we found our seats, we wondered if anyone else was there just for the captioning.  I immediately saw a college-aged girl speaking in Sign Language to a friend (D.C. is the home of Gallaudet University, the only liberal arts university for the Deaf in the world) and whispered, “there’s our answer!”  Then a man sat down in front of us; he had dark brown cochlear implants on both sides of his head, matching his dark brown hair.  I eavesdropped as his friend introduced him to a woman who worked at the theatre.  “This is Dr. Michael Chorost” (I paid close attention as she fingerspelled C-H-O-R-O-S-T), “he wrote a book about getting Cochlear Implants.”  My ears perked up.

In addition to my excitement over Dr. Chorost, the play turned out to be excellent.  As we walked out of the theatre, Brandt couldn’t stop talking about how great the play itself was, compounded by the captioning.  “I understood every word!  It was wonderful!”  I agreed 100%.

I never got up the nerve to talk to him, but as soon as we got back to our hotel, I looked up his book, Rebuilt: How Becoming Part Computer Made Me More Human (the subtitle of the paperback edition is My Journey Back to the Hearing World).  I ordered it the second we got home from D.C. 

It took me a long time to get Brandt to read Dr. Chorost’s book, even though they have a lot in common, down to their TI-83 calculators from high school and current iPhones, Dell laptops, and general techno-geekiness.  There were several reasons for his resistance.  First, he didn’t think his hearing was near as bad as it was (this was 18 months before his first appointment with Dr. Awesome).  Second, he was holding out for stem cell/gene therapy.  Third, and most importantly, if you haven’t had Cochlear Implant surgery explained by a good surgeon, the idea of it is terrifying.  So it wasn’t until after the HLAA convention that I could convince him to read it.  He said he liked it, although he “already knew most of the information on Cochlear Implants.”  I rolled my eyes and reminded him that he didn't know anything about them before the convention!

  

Philadelphia Bound!

My Grandma Jean is awesome.

I had been wanting to attend the National Association of the Deaf’s biennial conference in Philadelphia this July, but it was going to be way too expensive.  Since they only meet every 2 years, the conference lasts 6 days—which makes sense economically, instead of having a 3- or 4-day conference every year and paying for an additional flight.  But, 5 nights in a downtown convention hotel, a $500 flight, transportation, and the conference registration adds up to way too much for an unemployed writer to afford.

So, my Grandma Jean told me on Sunday, when we were back home for Mother’s Day, that it was really important for me to attend the conference and she was going to help me out.  Wow!

Aside from the cost, I still have some concerns (ok, fears) about this trip.  First is the language.  Keep in mind that the NAD is the reason American Sign Language did not go extinct after Oral-only education was mandated for deaf students in 1880.  So everything is going to be conducted in ASL: the workshops, the Miss Deaf America finals, the College Bowl Tournament, etc.  They also provide CART live captioning, but I’m afraid of getting overwhelmed by the super-fast, nonstop signing.  I’m also worried about trying to communicate with the other attendees.  I have a feeling I’ll be saying “SORRY I SLOW I LEARNING ASL” and “I CAN’T READ FINGERSPELLING!” quite a lot.  That, and just staring blankly with very wide, lost eyes.

Second, this is the first time I will ever be flying by myself (Brandt can’t go because he has to teach summer school).  I’ve always flown with either family, classmates, co-workers, or Brandt.  I know that’s pathetic, but I have a very poor sense of direction and I hate airports!  Luckily my flight is nonstop, and I’m going to carry-on my luggage so I don’t have to worry about finding the luggage claim.  Just the thought of finding the taxi line is making me really nervous, though.

My third concern is acceptance.  We have been graciously welcomed into our local Deaf Community's events, but we are still outsiders to their culture.  Deaf people are generally very patient with ASL students, but after a few minutes, it gets hard to simplify and slow down your speech enough to make it accessible to someone who is just learning your language.  Have you ever tried to talk with someone who is new to speaking English?  It's hard to maintain without getting frustrated and bored.  So even though I'm an ASL student, a Nearly Earless spouse, and an Anthropologist who loves exploring new cultures, I am and will always be an outsider to the Deaf culture.

To prepare for the conference, in addition to studying up on ASL, I need to read a few more books on Deaf culture from the big stack sitting on my desk (which is actually the coffee table).  At the top of the stack are A Place of Their Own: Creating the Deaf Community in America, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard, and A Journey into the DEAF-WORLD.  That last one is 500 pages long, so I have a lot of preparation to do!

  

Star Trek-iversary

Happy Mother's Day!  A year ago today, Brandt saw a captioned movie in a theater for the first time.  He isn’t a big movie buff, but he does like Star Trek (yes, we’re geeks!) and I knew he wanted to see the latest movie in the theater.  However, with his hearing loss and no-longer-powerful-enough hearing aids (it was still a few months before he got the new Exelias), he knew he’d never be able to understand the dialogue unless he saw the movie with captioning.

Our nearby Big City didn’t have Open Captioning or Rear Window Captioning at the time, so we had several options—none of which were exactly convenient.  Brandt’s suggestion was simply to wait until the movie came out on DVD, and he would watch it with subtitles.  I immediately rejected this idea, because he was trying to avoid learning anything about the movie before he saw it and that would be practically impossible after waiting several months to see it.  I also didn’t like the idea that he would have to miss out on the big-screen experience because of his hearing impairment. 

The second choice was to drive two hours to our hometown and see it in Open Captioning, which would be offered several weeks after the initial release date.  This was problematic because OC movies are only offered at specific dates and times, and the company couldn’t tell me in advance what those dates and times would be.  Sometimes they only offer a movie in OC during the middle of the week, which would be impossible for us to attend.

Our third choice was to drive four hours in the opposite direction, to the nearest theater offering Rear Window Captioning.  I had been to several OC movies with Josie, but had not been to a RWC movie before.  I asked Louise what she knew about RWC, and she didn’t know much about it either.  The upside of RWC is that it is available during any showtime, because you have a Reflector Panel that you install in the cupholder to capture the text that is displayed on an LCD screen in the back of the theater.  I chose RWC for our dilemma; I bought the tickets online and surprised Brandt by saying “Go get ready fast, we have a looong drive ahead of us!”

I asked the ticket seller where to get our “captioning-viewer-thingies” and was pointed to the manager’s desk.  He fished out two Reflector Panels from a cardboard box and handed them to us.  They were heavy and cumbersome, and I felt very self-conscious as we carried them into the auditorium.  It took longer than I had anticipated to drive there, so there were already about 75 people in their seats.  I had read online that it’s best to sit in the middle of the theater when using RWC, but all those seats were already taken.  Brandt said, “Let’s just find a seat in the back.” 

We tried sitting on the second-to-last row, but couldn’t get the RWC text anywhere in our Reflector Panels from there.  So we moved one row down and sat off to the right-hand side; it worked, sort of.  After a good five minutes of turning and twisting the arms of the panels, we each finally got it in a spot where 1) it would stay put without slowly drooping, and 2) the text, “Welcome to Rear Window Captioning/Please adjust your reflector” was visible—albeit, my text was way over in the upper-left corner of the panel, and Brandt’s was down at the bottom of his panel, several inches away from the screen.  It was far from perfect, but, it was something! 

The first preview didn’t have captioning, which made me nervous.  The Open Captioned movies I’d seen with Josie never had their previews captioned either, but I was still a little worried.  The second preview, for “Up,” was captioned, and I was so excited I hit Brandt on the shoulder.  When the movie itself started, I was bouncing up and down in my seat.  I looked at Brandt at least 20 times throughout the movie, making sure he could still see his captioning and was enjoying the plot.  “Watch the movie, not me!” he whispered.  It was an absolute success; he had a few issues with the alternate plotline, but loved being able to see the movie in the theater, on opening weekend, AND able to understand every word.  I was beaming the whole four-hour car ride back home. 

We didn’t have nearly as a great an experience when we attempted to see the movie again, this time in Open Captioning, with our friends Cassie and Basil.  But that’s a story for another post.

And for you fellow Trekkies, here is a picture of Brandt’s surprise Star Trek groom’s cake, baked and decorated by our very own Josie!

ASL Level 3

Last Friday, there were only 3 people signed up for my Level 3 ASL class.  We need 12 for the class to make, so it wasn’t looking possible.  But Monday afternoon, they got enough people at the last minute.  Hurray!

So Monday night, I had to teach Brandt the last two lessons from Level 2, which I had finished back in early March.  We kept putting it off, since he was so busy with his doctorate classes and didn’t have time to learn anything else.  It was about 100 words, but we got through them pretty quickly.  Then I went through the entire Signing Naturally Level 1 book, which we used for both our Level 1 and Level 2 classes.  Luckily I could remember almost all of the signs.

When I got to class, I discovered that we only had 8 students.  I think this is better; when we have too many in the class, it’s hard for everyone to get the assistance they need with learning the signs.  The second surprise was that our teacher, Mary, is Hearing.  She doesn’t have any family that is Deaf; she learned ASL after graduating college.  I think it’s strange that we had a Deaf teacher for Levels 1 and 2, and a Hearing teacher for Levels 3 and 4; reversing that probably would have been easier.  Since my previous teacher, Susanne, was Deaf, it was much harder to understand her.  I didn’t know enough signs to talk to her extensively and ask all the questions I had, and because she spoke primarily in Sign, I didn’t always know what she was saying.

I had a few freak-outs when Mary told me that several of the signs Susanne had taught me were wrong.  Now, a lot of words have several different signs—there are regional differences, and some are even personal preferences.  But this wasn’t the case; the signs I used were just wrong.  Then she announced that we would all have to take Level 3 again, at least once, because it was too hard and we couldn’t advance straight to Level 4.  I’ve always been a straight-‘A’ nerd, so being told that essentially I’m going to fail a class didn’t sit well with me.  Granted, it’s not really “failing,” but in my mind, it’s just as bad.

I calmed down after the first hour of class.  Mary told us some stories in Sign (no voice), to see if we could understand her.  The first story was about her new $25 refrigerator bought from a friend, which she had to put in her garage because her kitchen is too small.  I understood what she said!  I started feeling better about the class.  Then she told us about the house she grew up in, which was a ’70s all-glass house that was not conducive to high school parties because the neighbors (and cops) could see inside.  I got it again!  Maybe this won’t be so bad afterall…

I was on the phone with my mom when I got home from class; Brandt was taking our dinner, homemade pizzas, out of the oven.  He asked me just in Sign if I wanted milk.  I signed back, “NO, WATER.”  He nodded and walked away to get it, then paused and looked back at me with a big excited grin.  We communicated in Sign!  I grinned back and signed GOOD!  He beamed.

AZ Rules for Captioning

My opinion of Arizona has increased exponentially this week.  The Ninth Circuit Court of Appeals has overturned a 2008 ruling by the lower court, which now requires that movie theaters provide captioning for D/deaf/hard-of-hearing patrons and descriptive audio for blind patrons, under the auspices of the Americans with Disabilities Act.  This is the FIRST TIME a court has ruled in favor of captioning; there have been several cases where the movie theaters settled and agreed to provide captioning on a small percentage of their screens, but never before has a judge ruled in the plaintiffs’ favor.

The judge in the 2008 ruling, Arizona v. Harkins, said that because “theaters offer motion pictures to the public in a specific format which combines audio and visual elements,” providing captions and audio descriptions would require a movie theater to “alter the form in which it normally provides services,” meaning that closed captions would “change audio elements into a visual format” and descriptions would “change visual elements into an audio format.”

So why have judges always ruled against captioning in the past?  And why hasn’t it been required by the ADA?  Longtime captioning advocate Nancy Ellis explains it best, 

“Movie theatre complexes are different because while the building is subject to ADA accommodation laws, what’s on the screen (or in the case of live theatre – what’s on the stage), is protected under the first amendment.  It is proprietary content. In the eyes of a motion picture studio, asking them to put captions on their films is equal to placing dots on the famous painting “The Mona Lisa” in order to make it accessible to someone who is Blind.  An exaggerated analogy, but essentially, the argument has been you can’t alter someone else’s work of art without their express permission.  In the case of live theatre, the artistic director generally decides if and where captions will go.”

But as Brandt pointed out, “There’s only one Mona Lisa.  There are thousands of copies of a movie.”  I added to that, “Of course you can’t alter the actual Mona Lisa, but why couldn’t you have a replica that is accessible to blind people?” 

I find it ridiculous to say that making something accessible just by adding captions or audio descriptions is too ‘fundamentally altering of a movie’s artistic merit.’  Would many people have gone to see Crouching Tiger, Hidden Dragon if it didn’t have English subtitles?  I highly doubt it!  Let’s be honest here:  this is all about money.  Movie theaters don’t want to pay the extra money for the captioning and descriptive technology, and they aren’t going to provide it out of the goodness of their hearts (or pocketbooks).  They’re only going to comply when they’re forced to—and they’re willing to spend money on legal battles against it, rather than just pay up front to give us captioning.

The judge in this week’s case, Alex Kozinski, had some great statements against the movie theater chain in question, Harkins.  He couldn’t understand why they would want to be “forced to do something” that they “should willingly and cheerfully and happily do.” 

Judge Kozinski pointed out that “theaters cost huge amounts of money.  A movie theater is no longer a barn with a sheet at one end and a bunch of chairs…you have all sorts of sophisticated technology, 3D viewing and so on… This seems like a drop in the bucket.” 

And, my personal favorite,

“You are going to lose eventually.  I don’t know if you are going to lose this case or not, but you are going to lose this battle in the end.  You can get out in front of it and be the good guys, or you can be dragged kicking and screaming and look like jerks.  I don’t understand why you are choosing to fight this battle.”

He called them JERKS!  I love this judge!

I have the perfect solution to this debate.  Take the movie theater owners, their lawyers, and unsympathetic judges to a movie—not a big-budget action flick; one with a lot of dialogue, like Before Sunset.  Have them wear foam earplugs, the kind used by construction workers, and give them headphones that play loud, constant static.  Then halfway through, turn the sound completely off.  Ask them how much they enjoyed the movie. 

Or, play a German movie without English subtitles, and make sure to turn the volume way down.  See how much they got out of it.  They could still see the movie, afterall, and probably figured out some words here and there.  That’s just as good as being able to fully hear and understand a movie in English, right?  Right? 

Didn’t think so.

  

Poor Opryland

The weekend flooding in Tennessee, especially Nashville, has wreaked major havoc on the Gaylord Opryland Hotel where we attended the Hearing Loss Association of America convention last June.  The bottom floor of the hotel is currently under 6 to 10 feet of water inside, and they might have to close for up to six months for renovations. 

This makes me sad because I have such wonderful memories of the Opryland Hotel and the HLAA convention.  It was where Brandt first discovered just how amazing Cochlear Implants are and decided that not only were they “not so scary afterall,” but that he really wanted one, ASAP!

The Opryland is the largest non-casino hotel in the world.  It is made up of several huge atriums; with its all-glass ceiling, indoor river, and thousands of plants and trees, it really does feel like you’re outside.  Because it has gone through so many expansions, the layout of the enormous hotel is very confusing.  If Brandt hadn’t been with me to navigate, I never would have found the convention from our room—it was half a mile away!  You really have to see it in person to fully appreciate just how ginormous the place is; pictures can't do it justice.  But, I’ll try.

Here is my picture of the Cascades restaurant, where Brandt and I had a very nice lunch (click pictures for higher resolution):

…and what it looks like now, underwater: 

The view from the restaurant, which is completely underwater today:

Gazebo in the Garden Conservatory—popular spot for weddings:

Entrance to the Delta Atrium, by far the largest of the four:

Boatride on the indoor Delta River.  We had so much fun taking the boat tour!

Update:  How about some before-and-after video for a better effect?  The before video is rather long (but like I said, this place is huge!); the interior shots start at 0:40.  The after video shows the 10 feet of water in the Cascades atrium—wild!