“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.

Day 3 of ALDAcon

I’m still whooshing just as bad, but, I’m trying to just deal with it for now.  Luckily my alarm clock is also a sound machine, so playing the “waterfall” sound really loud gives me something else to concentrate on while trying to sleep, and it’s helping a little.  So, back to ALDAcon!

Day 3 started with the workshop “The Power of Nonverbal Communication” by Michael Bower, a Life Enrichment Consultant.  Mrs. Bower does not sign, but gives many presentations to hearing loss groups.  She explained that there are 3 parts to communication:

1. The words we say—only 7% of communication
2. The way we sound doing it—38% of communication
3. The way we look doing it—55% of communication

There are a number of things involved in communication that impact how we are perceived, including loud vs. soft voice, pitch (too high is shrill, too low is aggressive), how fast (‘brash’) or slow (‘simple’), universal sounds (angry voice, ‘pillow talk,’ etc.), touch, how we look while talking (facial expressions, gestures, eye contact, etc.), cultural issues (distance apart, what we wear), and body language.  Mrs. Bower explained that with practice and awareness, people with hearing loss can improve their communication through good non-verbal communication skills.

My second workshop was “Dating and Intimacy with New Partners” by Marisa Musso.  I was a little worried about attending this workshop, since I’m married, but it was the only workshop being offered about relationships.  Ms. Musso started by reminding attendees that “you are not your hearing loss; it is only a part of you, it does not define you.”  She explained that deaf and hard-of-hearing people are looking for the same things in a relationship as Hearing people are, with one addition:  they want a partner who will accept their hearing loss.  This can be difficult because it is common to get tongue-tied, and the fear of disclosure regarding hearing loss can be scary.

Ms. Musso went through a number of questions for participants to think about—questions to have answered before going out on your first date with someone new, so that you’re already prepared.  The first question is, when do you want to disclose your hearing loss?  This is a personal choice and could be prior to the first date; on the first, second, third, etc. date; when the other person notices, etc.  The second question is, how do you want to disclose your hearing loss?  Examples include:  apologetically (probably not the best approach); as a significant part of your identity; as an insignificant part of your identity; with confidence; with humor; or not acknowledging it at all.  The third question is, how would you prefer disclosure to occur?

The theme of the workshop was “Confidence is Sexy!”  Ms. Musso suggests disclosing a hearing loss in a positive manner, such as saying what you have learned from it and the bright side.  She gave us each a sheet of paper to fill out for preparing for a date, which includes writing some details about your hearing loss, tips for communicating with you, humor, how to show you’re proactive, and how to show you’re confident.  It is important to show your dating needs and habits, so anticipate possible barriers that could arise on a date (such as bad lighting or too much background noise), plan solutions for these situations, and be proactive by mentioning common problems before they happen.  For communication, Ms. Musso stressed that bluffing (pretending you heard/understood when you really didn’t) is not allowed when you and your date are sharing personal thoughts and feelings.  Be clear about what you need to be able to hear, and be honest when you don’t hear.

Intimacy barriers that stem from hearing loss include environmental (e.g. lights), attitude (e.g. avoidance), and emotional (e.g. fear and shame).  Ms. Musso reminded us that self-esteem is a very important factor in successful dating, and people with hearing loss often have self-esteem issues related to their hearing status.  She told the audience to keep in mind that many relationships end for the same reasons, whether someone has a hearing loss or not, but people with hearing loss and disabilities often blame themselves or their disability for the end of a relationship.

Websites recommended by the workshop include:

A Greater Date (online dating for Deaf/Hard-of-Hearing)

Dating4Disabled 

Dating Tips and Advice 

And a website about Self-Esteem 

Our keynote speaker at the Awards Luncheon was Patricia Graves, the president of Caption First and a pioneer in captioning since its inception in the ’80s.  She has developed the standards for CART (Communication Access Realtime Translation) captioning, and is certified in “every state and national captioning certificate that exists.”  Ms. Graves is losing her vision due to diabetes, and drew may comparisons of going blind to going deaf, such as bluffing (saying “oh yes, that’s a lovely painting!” when she really can’t see it), and being accused of having “selective seeing” (people with hearing loss are often accused of having “selective hearing”—only hearing when they want to).  She said to her ALDA family, “You have taught me to recognize that limitations are okay, and it is okay to ask for help.”

My final workshop of the convention was Part 3 of “Communication Strategies and Basic Sign Language” by David Litman.  We reviewed family signs, and learned signs about time, weather, and emergencies.  I learned a new sign—HURRICANE.  Mr. Litman reminded us to “think visually!”  I loved seeing the room full of people eager and excited to learn Sign Language, and I am so glad that ALDA encourages its members to embrace ASL.

Our all-night Karaoke Party deserves its own post, so stay tuned!

  

Day 2 of ALDAcon

Friday was a very busy day at ALDAcon.  We started at 7:30 with the Newcomers/Chapter Leader Breakfast, where us newcomers were introduced to the regional chapter leaders and were welcomed again to the ’Con.

My first workshop was “4G Mobile Technologies Creating Accessibility,” given by Mike Ellis and Ken Arcia with Sprint.  It’s too bad Brandt wasn’t there, since he’s such a technology-geek!  I learned that 4G can deliver mobile downloads up to ten times faster than 3G.  One of the great things for Deaf/Hard-of-Hearing people is fast, high-quality, 2-way mobile video, which allows for communication in Sign Language.

Next, I attended “The Battle for Captioned Movies—an ADA Case Study,” given by deaf lawyer John Waldo of the Washington State Communication Access Project (“Wash-CAP”), who also gave the workshop on Advocacy and Access the previous day.  Mr. Waldo explained that when the Americans with Disabilities Act was passed in 1990, Open Captioning print had to be burned onto movie film, making it expensive and cumbersome.  This is why the House ruled that Open Captioning was not required by the ADA, but was “encouraged.”  However, new digital technology has changed how Open Captioning is done.  The text is provided on a separate disk, which synchs to the sound of the movie.  Every movie theater screen has 2 projectors, one that shows the previews and one that shows the movie.  So the captioning is simply shown on the projector used to show previews (I certainly didn’t know that, did you?!).  I also learned that digital Open Captioning is provided to movie theaters free of charge by the Media Access Group at WGBH—the organization that invented television Closed-Captioning, Descriptive Audio, and Rear Window Captioning.  In the case of Rear Window Captioning, the captioning disks are provided to the movie theater free after the theater has paid to have the equipment installed.

Mr. Waldo gave an overview of all the lawsuits filed over the years for captioning in movie theaters, including the recent Arizona case that was the first time a judge had ruled in favor of requiring movie theater captioning (and the judge called the movie theater company “jerks” for not offering the captions voluntarily!).  Since movie theaters can no longer argue that captioning is too expensive, their current argument is that Open Captioning is “too distracting” to Hearing audiences.  This is why captioned movies are always shown at off-peak times and days.  Mr. Waldo explained the “New Jersey pattern,” named after the 2004 case where Regal Entertainment Group in New Jersey was required to have 12 captioned movie showings per week:  2 shows per day, one in the afternoon and one in the evening, except for Friday and Saturday nights.  I am definitely going to ask Mr. Waldo’s advice for getting our local theater to offer OC movies more than one afternoon and one evening a week!

Next was the Appreciation Luncheon with Dr. I. King Jordan as our speaker.  In 1988, Dr. Jordan was named the first Deaf president of Gallaudet University (the only liberal arts university in the world for Deaf and Hard-of-Hearing students), following a student protest called “Deaf President Now.”  Dr. Jordan signs while he speaks, and has a very powerful yet down-to-earth presence.  He spoke about advocacy and how there is a difference between access and compliance with laws, saying “many places comply with the laws, but don’t really provide access,” such as the off-times of Open Captioned movies.  Talking about the lag-time on MSNBC’s Closed-Captioning, Dr. Jordan said,

“My wife won’t watch TV with me anymore because I bitch and moan so much about the captions!”

Despite this, though, he admitted that he has never filed a complaint with the FCC, nor has he written a letter to MSNBC or any other channel that has captioning problems.  He said, “We’ve all experienced the same thing; why don’t we do more?  It really is our responsibility.” 

My third workshop was Part 2 of “Communication Strategies and Basic Sign Language,” given by clinical social worker David Litman (I missed Part 1 the day before for Mr. Waldo’s workshop).  Mr. Litman had us review the alphabet, and then he taught family signs.  I was having another bout with altitude sickness, so I was glad they were all signs I already knew!

The final workshop I attended was “Life After Deaf:  Adjusting and Thriving,” by Sharaine Rawlinson Roberts, the Marketing and Account Manager for Caption First.  Ms. Roberts became deaf overnight at age 14, after volunteering in a hospital in preparation for becoming a pediatrician.  She caught spinal meningitis from a patient and nearly died (doctors told her parents that if she lived, she would be a vegetable).  Her first thought when she came out of her coma was, “No one will marry me now.”  After graduating high school, she attended the National Technical Institute for the Deaf, where she “learned communication skills by socializing.”  She learned Sign Language, because there are “so many variables” for successful lipreading.  Ms. Roberts has a Cochlear Implant and is happily married.  Her “Tips for Survival” after becoming deaf are:

• Ask people to repeat what they said
• Learn fingerspelling
• Check into Assistive Listening Devices 
• Turn on the captions on your TV
• Seek out counseling 
• Do things that bring you joy
• Join ALDA

Speaking to those with Hearing spouses, Ms. Roberts advised,

“It will help your marriages if you try to learn a way to communicate.”

For “pillow talk,” she highly recommends learning some signs.

I skipped the Cocktail/Social Hour for a quick nap before the I. King Jordan Award Banquet.  The winner of the I. King Jordan Award was Dr. Jane Schlau, a late-deafened woman who earned her Doctorate in Education after she lost her hearing.  Her dissertation was about acquired deafness.  In her acceptance speech, she asserted, “Deaf people CAN!”

Bill Graham, the founder of ALDA, spoke about how ALDA was started with a Chicago pizza party in 1987.  Their first convention was held in a hospital in 1989, with 42 attendees.  It was the first time that Real-Time Captioning was used in a group, ever.  Mr. Graham said that without Real-Time Captioning, ALDA never would have become a major organization.  He told a hilarious story, where the new CEO of the National Association of the Deaf, Howard Rosenblum, asked Mr. Graham, “So how can we get some of your people to come to NAD?”  Mr. Graham responded,

“You’ll have to hire someone to do Crappy Sign Language!” 

I was doubled over from laughing so hard, because it’s true!  My sign language is not true ASL, and ASL is not used by the interpreters at ALDAcon.  While most ALDAns at the ’Con signed while they spoke, it was far from perfect signing—because if you’re late-defeaned, you probably didn’t grow up speaking ASL, and who can speak a language flawlessly that they didn’t learn until adulthood?!  I think “Crappy Sign Language,” or “CSL” as we started calling it, is a great tongue-in-cheek description of the popular communication style at ALDAcon.

A lady got up to speak (I forgot your name, I’m sorry!) about ALDA and how it had changed her life.  She said, “All of us are in the same boat, struggling to communicate.”  She ended by saying, “We are your family.”  This is something that I heard many times throughout the ’Con—that ALDA is a family.  I had read this on their website before the ’Con, but it really is something you have to see and experience in person.  It truly is a big family, and the ’Con is their annual family reunion.

Our final activity for this very long day was the entertainment, “Taiko with Toni.”  I didn’t know what to expect, so WOW was I surprised.  It turned out to be traditional Japanese taiko (“drum”) and bamboo flute music, and it was incredible!  First, Lance and Toni explained the different pieces of Japanese clothing that they were wearing, and then they explained the different sounds made by the drum:  don is loud, su is soft, tsu is silence, and ka is hitting the drum on its edge.  Everyone really enjoyed the music, and at the end, someone started a conga line.  I was exhausted, but Linda, the ALDA president, told me I had to join the line.  I cut in right behind Dr. I. King Jordan, and that was a surreal moment.  I thought to myself, “I’m conga dancing to Japanese drums behind the first Deaf president of Gallaudet University—how is this even possible?!” 

I forgot my camera, so here is a picture of Lance and Toni from their website:

First Day of ALDAcon

Technically the first day of ALDAcon was on Wednesday night, but I didn’t arrive at the hotel until 7:00 and the only ‘activity’ was registration.  I picked up my nametag, totebag, and program book, and met up with the two ladies I had been e-mailing, Marilyn and Jane.  We ate dinner, chatted a bit about their Cochlear Implants, and headed off to bed because we’d been traveling all day.  There was a Hospitality Room set up with card games, board games, and puzzles, and there was a group of people having a great time playing and laughing, but I was just too tired.  Thanks to the altitude, I couldn’t really sleep though.

Thursday morning, we started with the Newcomers Workshop.  Cynthia Amerman, the President-Elect who had sent me that awesome welcome e-mail the week before, welcomed the 20 newcomers by name (she was too far away to see our nametags) and had us stand up.  Our first activity was a Bingo game, where we each had a Bingo card with descriptions taken from our Newcomer Form.  We had to go around the room and find whose name fix in each square, such as “uses sign language,” “has a Hearing spouse,” “enjoys gardening,” and “likes to write and knit” (that one is me!).  Next, Cynthia asked people to think of some advantages to being deaf.  A lady said that it’s easier to sleep because of the silence.  A man said that his room is right next to the elevator, but it doesn’t bother him because he can’t hear it.  Then she asked us to raise our hands if these had happened to us:  being embarrassed by bluffing (pretending you heard something and just nodding along), being accused of ignoring someone when you couldn’t hear them, losing friendships/relationships because of hearing loss, being left out of family conversations, and being exhausted from constantly straining to hear and understand.  Cynthia showed the sign for ACCEPTANCE, and said,

“You will find acceptance here, your home.” 

I think most of the room was crying at that point (myself included!).  Then another lady, Judy, got up to talk about communication.  She explained that ALDA “supports whatever communication method works for you,” because “if it works for you, it works for us!”  I just love this approach; it’s so inclusive and open-minded.  Judy explained that “we don’t have to bluff here!” because everyone can find a way to communicate—with signing, lipreading, or writing things down.  There were pads of paper sitting on every table in every room of the ’Con—even on every table in the hotel restaurants!  There were also small whiteboards that people could borrow.  She explained that the Sign Language interpreting done at ALDAcon is more English word order than ASL, and the interpreters mouth all the words to help with lipreading.

After the first workshop, we had some free time before lunch to tour the Exhibit Hall.  On the way in, I struck up a conversation with a Newcomer couple, Bob and Sarah.  Bob has been losing his hearing over the past few decades, and has Phonak BTE hearing aids and an FM system just like Brandt’s.  Sarah is the Hearing Spouse, and I couldn’t believe my luck that I had found a couple so much like Brandt and myself!  The three of us became instant friends, and we spent the rest of the ’Con talking and sitting together.  It was wonderful to be able to talk with Sarah about ‘Shadow Spouse’ issues like going to restaurants, being stared at while wearing the FM system, and having our husbands get upset when they misunderstand and think we’ve just insulted them.  She often had to repeat things for Bob when he missed them, and I knew exactly what that was like.  Bob recently missed being a Cochlear Implant candidate by only 8%, so I could definitely sympathize with that as well.  I was sad that Brandt couldn’t be there to meet them, but they got to hear ALL about him.

Our speaker at the President’s Luncheon was Cheryl Heppner, the executive director of the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons.  Ms. Heppner signs, lipreads, and has a Cochlear Implant and Hearing Dog.  She even wrote a book entitled Seeds of Disquiet:  One Deaf Woman’s Experience.  She is a hardworking advocate, focusing on improved telecommunications and captioning for television and movie theaters.  At the luncheon, she told us that the #1 gripe she hears from Deaf/Hard-of-Hearing people is about captioning.

The afternoon workshop I attended was “Organizing Effective Advocacy—Working Together to Build an Accessible World,” given by John Waldo, a deaf lawyer and founder of the Washington State Communication Access Project (“Wash-CAP”).  Mr. Waldo explained that advocacy done by individuals does not get much accomplished; the other end of the spectrum is filing a class-action lawsuit.  However, he suggested a middle ground—organized advocacy groups, such as his group Wash-CAP.  These kinds of groups are “more effective, comfortable, and strategic.”  When deciding what to advocate for, Mr. Waldo suggests developing a priority list, balancing what is “most valuable” versus what is “most achievable.”  Then, you must “identify who will say ‘yes,’ and who can’t say ‘no.’”  For example, when a movie theater company says it cannot possibly afford to install Rear Window Captioning, pointing out how many millions of dollars in profits they make every year can show them that they really can’t afford to say ‘no’!  If advocacy work is not successful, then you should consider exercising your legal rights.  Mr. Waldo said that word gets around fast, so this option doesn’t have to be used often to be effective, because it “gets the attention of the person who can say ‘yes.’”  His final suggestions for positive advocacy were:

• take and give credit
• publicize
• say “thank you”
• support and enjoy

Next was our guided tour of the Garden of the Gods park.  I was really dizzy and tired from the altitude, but I was determined not to miss the tour.  On the bus, I sat next to ALDA’s current president, Linda Dratell.  I told her about growing up with Aunt Louise, and about Brandt.  She was very interested in my story, and asked if I would be interested in starting an ALDA chapter in our area.  I know it would be a lot of work, but I’m intrigued at the idea!  We visited several areas of the park, and the scenery was breathtaking.  I love mountains, so I had a blast.

After the tour, we went out to dinner.  We had a private room in the restaurant, but there was music playing overhead which made it hard to understand people because it mixed with the noise from all the conversations going on.  Luckily, everyone that I talked to also signed when they spoke, so we were all able to communicate fairly easily.  I never would have been able to understand these conversations relying only on speaking or signing, but with both, communication was fairly easy.  It was amazing!

I took over 100 pictures at Garden of the Gods, but here are 3 of my favorites:

Panoramic with Pike’s Peak in the background

These rock formations are huge

Rockclimbers

ASL Withdrawal

It’s been 3 weeks since my ASL Level 3 class ended, and I am going through severe withdrawal!  And making it much worse—it doesn’t look like there will be a Level 4 (despite what my teacher told us the first night, she said I can advance straight on to Level 4!) or even a Level 3 that I could re-take this Fall.  I’m not giving up on the idea yet; after all, they didn’t think there would be a Level 3 last semester until about 2 hours before the first night’s class. 

But, I’m still having to think of contingency plans.  I don’t want to lose what I’ve already learned (“use it or lose it” definitely applies to signing!), and I want to keep improving on my skills.  I haven’t been using ASL with Brandt very much since class ended, and we haven’t been around our local Deaf Community in several months.  We really need to get back into the swing of things before I get too far behind on my signing.  I’ve been reading a few pages of my unabridged ASL dictionary every day, trying to learn new words, but I need to be using it with other people.

If there isn’t a Level 3 or 4 class this semester, I’m going to see if my Deaf friend Julia can teach me Level 4 in private lessons.  She teaches several types of ASL classes (community classes, workshops for teachers and daycares, and classes specifically for deaf/hard-of-hearing—which Brandt is going to take once he finishes his doctorate).  I’ve wanted to take classes her from since I met her last summer, but she lives an hour away and the traffic getting to her house from where we live is insane.  But she learned ASL from the same place that I’ve been attending, and she knows the Signing Naturally book well.  As much as we both dislike it, it’s THE book in the world of ASL teaching—Gallaudet University even uses it to judge the signing skills of incoming students by asking which chapter you’ve last completed.  We went through the first half for Level 3, and Level 4 goes through the second half—so I already bought it and want to finish it.

And if Julia isn’t available for private classes…well, I haven’t thought of a second contingency plan yet.  I really wish there was a local college or university that taught past Level 1, but alas, there isn’t. 

On a brighter note, I’m going to have an exciting opportunity to use ASL a lot very soon.  Stay tuned for my next post for the details!

  

Fun with Ethnicities

In last week’s ASL class, we learned signs for a number of countries and ethnicities.  As I have mentioned before, ASL involves something called “frank talk,” where things are discussed openly and honestly without worrying about ‘political correctness.’  For example, the old signs for Asian countries/ethnicities all involved pulling on the side of the eye, which is now considered offensive.  The signs have been updated, but the old signs will undoubtedly still linger.

The “frank talk” also applies to our class discussions.  One of my classmates asked our teacher Mary (who is White) how to describe her racial heritage.  Mary asked her, “Well, what are you?”  My classmate asked back, “Isn’t it obvious?!”  Mary responded, “I want to hear how you describe yourself.”  She responded, “I’m African-American, of course!”  Mary showed her how to sign AFRICAN (another updated sign) and AMERICAN. 

Then Mary asked Carl, “So what are you?”  Carl answered, “I’m BLACK.  None of this ‘African-American’ crap.  I am a BLACK MAN!”  Mary taught him the sign for PROUD, and he stood up and signed “I AM A PROUD BLACK MAN!”  Another classmate said, “I agree, I’m not ‘African-American,’ I’m just BLACK!  I am a PROUD BLACK WOMAN!”  She then asked Mary, “So if someone is White, do you just sign ‘WHITE’?”  Mary said, “No, that sign is just for the color; for the racial description, like ‘Caucasian,’ you sign THIS…  You just can’t call us CRACKERS!”  She laughed as she made the sign CRACKER (as in the food).  Fortunately, everyone else laughed, too.

Mary next turned to me and asked what I was.  I looked down at the nearly-transparent skin on my arms and said, “Um, I’m gonna go with WHITE.  Very, VERY WHITE!”  Everyone laughed again.   “Actually I’m 1/8 Native American, too; but you can’t tell by looking at me,” I added.

As we were walking out to the parking lot, Mary said to me, “I was afraid I was getting myself into hot water for a minute there, but everyone seemed ok with it!”  I told her that when our Level 1 and 2 teacher Susanne (who is Black) first introduced nationalities/ethnicities last semester, she used one of the white students as an example for the sign and said, “You’re WHITE.  I don’t mean to hurt your feelings, please don’t get mad at me, but you are White!”  She then said the same to me; I laughed, showed her my arms, and said, “It’s pretty obvious, it’s not like I can hide it!”  She said, “There’s nothing we can do about our skin color, so we shouldn’t get upset about it.  We can’t change it, just accept it!” 

Our assignment for this week was to practice a short description of our ethnicity/heritage, and present it in front of the class.  I’m always afraid when I get up to sign that it won’t come out the way I practiced it, but this time it went perfectly.  I said (roughly translated):

“I am mostly German, a little bit Native American; but I look like I am 100% WHITE!”

I got some good laughs out of it.

Another girl in the class, who is “mostly Black,” has the same partial Native American heritage that I do:  the Choctaw tribe.  We joked that we’re probably long-lost cousins.

I love it when interracial groups can be open about race, especially when we can laugh about it.  We live in an area where race is a pretty touchy subject, and there is still a lot of racial tension hanging thick in the air.  Discussions like this give me HOPE!

Choctaw family in native dress, ca. 1908

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.

  

Day 3 of NAD Conference

My internet at the hotel completely died halfway through my stay, so it will take me a few days to get caught up on the second half of the NAD conference…

Friday was my 3rd full day of the NAD conference.  Brandt was able to join me in Philadelphia last-minute on Thursday night, which was a huge relief because I was feeling very socially isolated by my lack of ASL communication ability.  Our first workshops was “Federal Enforcement and Deaf Advocacy in Health Care and Vital Human Services,” given by a Regional Manager at the Office for Civil Rights at the US Department of Human Services, Paul Cushing.  He educated the audience about the different laws that “prohibit discrimination on the basis of disability” and guarantee Deaf and Hard-of-Hearing patients the right to “auxiliary aids” (including qualified ASL interpreters, assistive listening devices, phone amplifiers, video interpreters, and captioning) to provide “effective communication.”  Several of the audience members recounted times that they were either denied access to an interpreter, or were forced to pay for an interpreter out of their own pockets.  They were surprised to learn that it is the responsibility of the medical care service provider (such as doctor’s office or hospital emergency room) to provide and pay for all necessarily auxiliary aids.  Even if the Deaf person is not the one receiving the medical treatment, such as if a Deaf woman’s Hearing mother is in the emergency room, the Deaf person still has the legal right to an ASL interpreter.  Mr. Cushing encouraged the audience to file a complaint if they believe they have been denied the right to effective communication regarding their medical care—it must be done within 6 months of the discriminatory event.

Our second workshop was actually a commission, called “Captioning for Access: Here, There, and Everywhere.”  Instead of a structured lecture, this was a discussion about the need for more captioning access, run by members of a technical working group for the FCC, where audience members were encouraged to share their frustrations about the lack of captioning and brainstorm ideas for how to achieve more access.  Topics brought up by the audience included: delays on HDTV closed-captioning, placement of captioning that obscures the action in sports games, poor transcription quality on YouTube videos, lack of captioning on Netflix Instant View movies, and lack of captioning in movie theaters.  Karen Peltz Strauss with the FCC encouraged audience members to file a complaint if they experience problems with: closed-captioning on television, access to emergency information on television, telecommunications relay services, and telephone equipment services.  You can also e-mail her directly at:  Karen.Strauss@fcc.gov.  I found out on Saturday that there is a Deaf blogger named Tayler Mayer, owner of the website DeafRead, who has been blogging on the NAD conference.   He wrote a great synopsis of the commission on captioning.

Brandt and I ate lunch at the famous Reading Terminal Market, which houses over 80 restaurants and shops.  Many of them are operated by the Pennsylvania Dutch (Amish).  The most amazing thing about the market, though, was seeing Deaf people signing to each other at practically every shop, restaurant, and diner.  At every turn of a corner, there were more Deaf people deep in happy communication.  I tried my best not to be rude and stare, but it was hard not to.  It was a fascinating interplay of two cultures who are probably both used to being stared at when they are out in the mainstream public.

The two afternoon workshops were on theoretical aspects of ASL.  Theory has never been my strong suit, so I can’t possible do these workshops justice in my attempt to summarize and explain them.  “Whose ASL Is It? Is ASL Culturally and Linguistically Diverse?” was presented by Arkady Belozovsky, a lecturer in ASL/Deaf Studies at Brown University.  He is fluent in ASL, Russian Sign Language, and Gestuno (International Sign Language).  He spoke about the popularity and spread of ASL throughout the world, in large part due to international students attending Gallaudet University and bringing ASL back to their home countries.  He is upset by the continued teaching and use of Signed Exact English, which is a created form of Manually Coded English—signs used in English word order.  SEE is not an actual language, and uses invented signs for prefixes, suffixes, verb tenses, etc. that are not used in ASL.

The last workshop, “A New Theory of Sign Language,” was given by Jeffrey Mansfield, an architecture Master’s student at Princeton and board member of the Boston Access Advocates for the Deaf.  His presentation was fascinating, but the theory was so above my head that instead of trying to summarize it, I will just quote the description from the program:

“Revisit ASL linguistics and cultural identity in a broader cultural framework and learn about the rich complexity of American Sign Language and the Deaf experience. Starting with the work of post-structuralists Barthes, Foucault, and Derrida, this presentation navigates through Huxley's Brave New World, Derrida’s performative and McLuhan’s media ecology before examining responses from Baudrillard and deaf artists Aaron Williamson, Louise Stern, and Christine Sun Kim.  Joseph Grigely’s Textualterity will be explored in parallel with the field of cymatics, as well as Borges’ “Tlön, Uqbar, and Orbis Tertius,” the Stokoe Notation, and quantum theory to present a staggering and previously unacknowledged complexity vis-à-vis ASL and the Deaf experience.”

I have to point out the phenomenal job done by the ASL interpreters and CART transcriptionist in this workshop; they were worriedly preparing for the presentation before it started, reviewing all their notes, but they did an excellent job.

My next post will be on the Miss Deaf America pageant!

Day 2 of NAD Conference

My first workshop this morning was “Leading a Successful Advocacy Campaign,” given by a Disability Policy Manager at NISH  (National Institute for the Severely Handicapped), Alicia Epstein.  I have taken classes on designing health interventions and on program evaluations, so this workshop was a good refresher.  The presenter went over the main steps to advocacy campaigns:  researching the issue, collecting data, identifying the key messages, identifying resources and assets, identifying potential allies and opponents, identifying targets and agents of change, identifying strategies and tactics, and evaluating the campaign after it is over.  Epstein said, “You are the salesperson for your cause,” and emphasized that people like to feel ownership and empowerment when advocating on issues.

I had a lot of trouble understanding the female interpreters in this workshop.  Yesterday in both of my workshops, the interpreters used microphones, so I didn’t have any trouble watching the presenter on stage, looking at the PowerPoint screen off to the left, and could also take notes while listening to the interpreters.  But in this workshop, they didn’t use microphones and I was sitting too far way to hear them easily.  I decided that the microphone must have been malfunctioning…

The second workshop was “How the WFD (World Federation of the Deaf) Works for ASL and International Human Rights.”  I quickly found out that it wasn’t a problem with the microphones; I could barely hear the female interpreter speaking at all, and there was no microphone in sight.  There were people talking behind me, as well as a baby screaming, so all I could do was watch the CART captioning on the screen off to the right.  This was incredibly frustrating, because I wanted to be able to watch the presenter, Dr. Joseph Murray, signing.  It was also very difficult to switch my eyes from the captioning screen on the far right, to the PowerPoint screen on the far left, to Dr. Murray in the middle, and back.  The male interpreter was easier to understand (interpreters almost always work in tandem, switching off every 10 to 20 minutes to prevent fatigue), but I was just too far away to hear him easily.

The WFD was established in 1951 to represent the needs of the 70 million Deaf people worldwide.  The presentation was mostly about the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which has the objective of legally requiring that countries grant Deaf people the human right to use sign language, and to recognize sign language as an official language in that country.  87 countries have ratified the UNCRPD, including the United States.  The core message of the presentation—and of UNCRPD—is that sign languages should be considered equal to spoken languages and speakers of sign languages should not be discriminated against.

After the workshop ended, I went up to the interpreters and asked them if I was supposed to request that they use microphones.  They said no, that microphones weren’t provided, and were surprised when I said that in both of my workshops yesterday the interpreters had used them.  One of them said that since ASL is a visual language, if I needed to rely on hearing the interpreters then I should sit next to them; but also said that they would ask someone about possibly getting microphones.  I completely agreed, but said “I didn't think to ask, since the first 2 used microphones.  Now I know!”  A guy who had been sitting right behind the interpreters said, “I was sitting right there and still couldn’t hear!”  So at least it wasn’t just me.  

I went to Starbucks for lunch again.  I got in the elevator, with my lunch in one hand and drink in the other.  One of the Miss Deaf America Contestants, wearing her crown and sash, got in with another lady (probably her chaperone).  They both signed hello to me, and I struggled to switch my drink over to my left hand and say “HELLO” back.  The contestant saw that I was a first-time attendee and asked if I was enjoying the conference so far.  I understood what she asked, but it took me a few seconds to process it, and by then she was saying something else.  I signed, “SORRY, I’M STILL LEARNING,” and she repeated her question slower.  I said “YES, I’M ENJOYING!”  She showed me her sash, and asked if I was attending the competition tomorrow night.  I signed “YES, TOMORROW!”  As they got off the elevator and waved goodbye, I signed “GOOD LUCK!” and she thanked me.  I was so excited that I had (finally) successfully communicated in ASL!

Both of my afternoon workshops were given by the same panel, representing The Deaf Bilingual Coalition.  The first was entitled “Deaf Babies’ and Children’s Human Rights to ASL and English.”  The founder of the DBC, John Egbert, is Deaf and was raised orally (speaking only, no signing) and did not learn to sign until he attended Gallaudet University.  He is married to a Deaf woman, and both of their children are Deaf.  The second presenter, David Reynolds, is also Deaf.  The third presenter, Tami Hossler, is Hearing and has a Deaf daughter who is 25 years old.  She spoke fluent ASL throughout the presentation, and the translator spoke for her.  (And I was relieved that the interpreters both used microphones!)

The Deaf Bilingual Coalition states that

“Signing from the start gives success for a lifetime.”

The two main purposes of the DBC are:

1. To emphasize the importance of the social, emotional, linguistic, and cognitive aspects of ASL pertaining to early visual language acquisition for all Deaf infants and young children.
2. To make the general public aware of the prevalence of misconceptions and misinformation that devalues ASL.

Deaf babies are deprived of “visual language learning,” and are therefore deprived of learning any language at the beginning of their lives.  The DBC laments that the medical profession focuses on the pathology of deafness—viewing the lack of hearing as a problem that needs to be fixed.  They claim that over 90% of parents are ill-informed (or not informed at all) about sign language, and are warned not to let their Deaf children learn ASL.  The DBC panel provided data showing that babies taught ASL from the start have a stronger foundation in language and reading skills, despite claims that teaching them ASL hinders their language and literacy skills in English.

To provide Deaf babies and children ASL, the Deaf Bilingual Coalition advocates for Bilingual-Bicultural Education.  This means that the child is taught ASL first, and is then taught English as a second language.  The book A Journey Into the DEAF-WORLD, which I recently read, also advocated “Bi-Bi” education, as it is often called, and gives detailed reasons for why it is the best choice for educating Deaf children.

The second workshop by the DBC was entitled “Language Begins with Early Detection and Intervention: A Need for Systematic Changes.”  The presenters argued that the national Early Hearing Detection and Intervention program, which tests the hearing of newborn babies and sends those who fail to an audiologist, is based on the pathological view of deafness, and does not provide any information to Hearing parents about ASL or Deaf Culture.  They joked,

“To the medical perspective, we are just ONE GIANT EAR, needing to be fixed!”

Instead of this pathological view, the DBC wants to reframe how deafness is perceived, and to establish a “united front against The System.”  They feel that the reason Hearing parents are devastated when told that their newborn baby is deaf, is because it is presented in such a negative connotation.  John Egbert said, “We don’t have a problem, we just happen to be Deaf.”  He later stated that he is “not against Cochlear Implants or speech,” but is “for the education of our [Deaf] children.

These workshops were quite emotional for me, and while I already supported the theoretical idea of Bi-Bi education for Deaf babies and children, I am now a firm believer in it.  There were several times during the presentations that I started to get tears in my eyes, it was so powerful and emotional!

I kept thinking that one of the interpreters from today's workshops looked awfully familiar, but I couldn’t place where I would know him from.  I finally realized that it was Jon Wolfe Nelson, the actor who portrayed Marlee Matlin’s ASL interpreter on the Showtime show The L Word!  I started watching The L Word a few months ago when I was researching Marlee, and all but the final season were available on Netflix Instant View.  I watched the show for the ASL, and learned some rather naughty signs!

The College Bowl Tournament tonight was a lot of fun.  The questions covered categories including Literature, Natural Science, Mathematics, Geography, Entertainment, Current Events, and Deaf Culture and History.  Gallaudet University won the tournament, with the Rochester Institute of Technology/National Technical Institute for the Deaf just 2 points behind, and California State University at Northridge came in third.