SWC Convention - Day Four

Since we hadn't been satisfied with the previous morning's buffet offerings, Robyn, Paul, Mike and I decided to go out before the workshops began. I tried several times to get hold of Lorne too, but his phone wasn't working and he wasn't checking his email. We found a nice little deli not far from the hotel where I bought a yogurt parfait with strawberries and granola.

The morning began slowly with workshops scheduled for 9:00.

Side bar here-- I forgot to mention the other wonderful workshop given by our beloved Gayle in my last blog post about Thursday. Gayle types CART for us. This time she introduced Remote CART. I loved how it worked, and found it fascinating to hear her perspective as a CART provider. With remote CART, a person can be in one state, and someone else will provide CART for them via the internet in another state. ALL you need is an internet supported laptop with Skype and a good microphone. During her demonstration, her CART partner did the transcribing. I was amazed what she was able to pick up in the room considering we had over 70 people in attendance. The microphone was quite powerful! Anyway-- that was the third workshop on Thursday, and now I'm reporting on Friday.

First thing in the morning, we had visitors from the Association of Adult Musicians with Hearing Loss. Presenter Wendy Cheng gave a short overview of the different qualities of music, then played her viola a bit, and answered questions. The most awesome piece of information I came away with was that I might be able to hear the the piano again!!! They suggested the use of an equalizer with microphone so I could adjust the volume of the high pitches-- which I'm not currently able to hear. If that doesn't work, I could try using an electronic keyboard with equalizer built in. I had never thought of this and was super inspired by the concept. A couple others came over to discuss in more detail afterwards-- an HH pianist and a sound engineer. I'm just so HAPPY about all of this!! I know a sound engineer/musician here in the NW who I'm sure would work with me on the set up, and I'm fairly certain I wouldn't have to spend a fortune because stuff like this comes up for sale on ebay all the time. The AAMHL website is full of information on how to enjoy music with hearing loss!

The next workshop was given by Tina Childress from Advanced Bionics, LeAnn Boone from Med-el, and another woman from Cochlear Americas. I have mentioned Tina before, as I saw her speak in Vancouver. Wow-- does she get around! She speaks EVERYWHERE! This workshop was about cochlear implants. Sad to say, I wasn't feeling well so I left early and missed most of her presentation. However we went to lunch later and she asked a poignant question about the experimental hybrid I had qualified for last Nov.-- "Since you're still losing your hearing, what would they do if you eventually needed a regular implant?" I don't know the answer to this. But after the two conventions I attended this year I realized it's probably best not to pursue the hybrid implant seriously at this time. More about that later.

After the workshops, Lorne, Paul, Michael, Robyn and I went exploring down Elfrey's Alley-- supposedly the oldest street in America. Amazingly, people still live there. Robyn clicked her camera non-stop. We spent a long time walking around, then it was time for lunch. My mouth still watered for those Amish apple-dumplings Robyn mentioned the previous day. We took a bus to the Reading Terminal, then circled around in search of the apple dumpling booth. I decided to have a salad first, then attacked the dumpling with abandon. All I can say is YUM!! Afterwards, we split up. Robyn and Michael left since they'd already seen all of Reading Terminal, while Lorne and I continued browsing around. We finally caught Phlash (the tourist bus) to the Philadelphia Museum of ART. That place was huge and they had some fabulous collections there-- things I only get to see on special exhibits to Seattle. Unfortunately the museum was scheduled to close early because the governor was visiting. All we got to see was the Impressionist section. I was especially pleased they had my favorite Van Gogh painting of the sunflowers. They also had several Monets and Renoirs. I could have sung-- and would have-- if Lorne hadn't been there.

We left when security guards began gathering like ants to cotton candy. The Phlash bus was packed, and I thought I might die from or thirst or heat stroke or both. Would anyone have noticed? By the time we walked into the hotel all I could think of was a drink and shower, but before I even got undressed I fell asleep. We went to dinner very late at the same little deli I ate breakfast that morning, which offered reasonably priced vegetarian salads and hummus on pitas. Philly's Old Town is pleasant on summer evenings after the sun goes down, so we ate outside enjoying the night air and gathering crowds of young people for the Friday night bar scene.

This was SWC's "game night." By the time we made it back to the hotel, the game room getting crazy. Someone asked me to make a paper airplane. Next thing I knew she sent it flying at someone else. Before long my airplane was whooshing everywhere. Eventually Lorne aimed it at Michael hitting his beer, which spilled all over his clothes. NOT MY FAULT!! That was the end of my airplane. I went to bed.

SWC Convention - Day Three

In the morning we had workshops. Usually convention hotels provide "breakfast" in the form of rolls, fruit and coffee or tea for those attending meetings. I managed to find a yogurt and a sliver of honeydew melon before everything ran out. Many complained about the skimpiness of our 'breakfast', and I'm happy to say our catered buffet overflowed with fruit and muffins the following day.

Our first presenter was Neil Bauman who has written about ototoxic drugs. Let me say I do believe drugs can sometimes cause harm to hearing, and I appreciate his earnest effort in getting the word out. Neither my doctor or audiologist ever said word one about prescription drugs and otoxicity until I brought it up after stumbling upon Bauman's website years ago. A couple times doctors have done a double-take when I mentioned it because they were not even familiar with the word 'ototixic'. Since then my GP has changed a few prescriptions after consulting the PDR at my request.

However, I didn't feel Bauman's presentation included enough convincing factual information. I had hoped for more charts and detailed scientific studies from research institutions to back up his theories. Instead he related several amazing testimonials from people who claimed to have lost their hearing after using prescription drugs. Many of their stories had been gathered on-line in his own informal study from victims who wrote to him.

Never-the-less I've known several people who lost their hearing from prescription drugs and also during hospital stays. I just hope people can put Bauman's information into perspective when deciding to have medical treatment. While it's true prescription drugs can harm your hearing, the chances of experiencing such side-effects are very small.

The next workshop was about webcaptel, which is an exciting relatively new technology put out by Sprint. Instead of needing a special captel phone, all you need is a computer and a phone. The Sprint representative showed a video, then went through the steps for how to access webcaptel. It's simple! I tried it out later. Like captel it's a bit slow, but it's accurate and I can use it practically anywhere-- at work, when I'm visiting my parents out-of-state, or at a friend's house. I also like that it allows me to use my voice and other people don't know there's a transcriber typing what they say to me. It feels so much more natural than my old VCO.

Next was the hosted lunch for everyone in SWC who volunteers on a committee. Like the previous morning, restaurant service was incredibly slow. We had all pre-ordered so you'd think we could have been served in time to finish before our Philly Duck tour, but no . . .

The "ducks" are both a car and a boat. We were all given quackers, then driven around town to sitesee, and finally ended up in floating in the Delaware River. My only complaint was the tour bus was hot. I was happy when we finally went into the river as it felt cooler there. Someone bought little rubber duckies for everyone, and wrote our names on them with a sharpie. I was struck by the murkiness of the Delware, even though our tour guide said it was the cleanest it had ever been in over 200 years. I suppose it has something to do with mineral content or silt. I am not well-educated on river water.

Later that night Lorne and I walked around town looking for a good place to eat. We finally settled on Rotten Ralph's -- a small bar and grill with rare vegetarian variety. We found a quiet table on the second floor above all the street noise. My eggplant was delicious. Lorne's fishNchips were just "ok." Robyn and Michael joined us for beer as we were finishing up.

Then we all walked back to the hotel and bar. I got a craving for ice cream, mainly because Robyn had mentioned her apple-dumpling experience in Reading Terminal. I couldn't stop thinking about sweets. Since the bar was closed the waitress wouldn't give me any. So I asked the hotel manager where to go for an ice cream in "Old Town" after 10. He was kind enough to dish up a bowl of delicious Philly ice cream-- no charge!! I honestly had no problem with the hotel staff.

Philly Day Two at the Zoo!

Day Two in Philadelphia there was nothing planned until the Welcome Party at 7pm. Lorne would be flying in around 4-ish and Robyn wanted to see the zoo. She had never seen American animals in real life, she said. Which ones, I asked? She wanted to see a raccoon, which made me smile. I've got a family of raccoons living right in my yard. I actually don't like them very much because they aren't nice to cats. She also wanted to see squirrels, snakes and bears. I have ALL these in my yard. Bears do not come into my yard often, but I have had one. She had to say 'bears' three times then spell it because I couldn't understand what she meant with her accent. It looked like she was saying bees when I read her lips. The New Zealand 'r' is very soft. I couldn't believe they didn't have bees in NZ. HAHA! They DO! Of course!

We got up early, then went to breakfast in the hotel. It turned out Michael, Paul and RuthAnn also wanted to come with us to the zoo, which was fine with us-- the more, the merrier!

Robyn planned on bringing her marmite to breakfast so us Americans could try it, but she forgot. I was SO relieved. It stunk! OH! Before I forget. We became extremely upset with the breakfast service. They had a buffet but several of the board members didn't want that much to eat, so ordered a light breakfast instead-- Robyn included. After an hour and a half, they started throwing down their napkins and getting really pissed off. Nothing came. I got down to breakfast late. I was not hungry because I was still full from Robyn's pineapple lumps the night before. They're SOOOOOOOO good. So anyway, I went up to the desk, and complained about the slowness of their service. My breakfast order was taken and served within minutes. The rest got theirs too. We had tons of problems with the hotel staff throughout. More about that later. None of us ate breakfast at the hotel again until the final breakfast buffet where they went all out to please us, but our silver and plates were not well cleaned. Two people at my table sent their service back. Mine was OK.

Back to the zoo--those of you who know Robyn know she's into photography in a big way, and she takes beautiful pictures. I urge you to go to her blog if you haven't. Photography was the whole point of hitting the zoo. I should mention here, it was the oldest zoo in the country. It opened in 1874. It's a very, very small zoo-- but I sorta liked it because the animals were close and the buildings were old and beautiful. In the Seattle zoo, all the animals have much more space which means they often wander far away from the viewing area. This is better for the animals I know, but I kinda liked being able to see them up close in Philadelphia.

Anyway-- it was hot out and they had confiscated my sunscreen at the airport-- so Paul and I bought some there. It was really cool cuz the bottle has a little metal ring you can attach to a belt loop or your tote so you won't lose it. I LOVED this idea! So did Paul! Now we have matching sunscreens!

We got separated several times at the zoo, so we all exchanged phone numbers and texted each other all the time. Somehow the first time I texted Paul to see where he was, he sent back the word, "just." ARGGHH! Later, when Paul and I couldn't find Robyn, she sent back the word "just" too. This has become a joke -- or maybe it's a secret code I've never figured out.

I should add here Philly is very easy to get around without a car. They have these tourist buses that will drive you to all the fun places tourists like to go. You don't have to worry about navigating a strange city by bus because it goes in a constant circle. If you miss your stop you'll end up there again in no time. Our zoo driver became upset and stressed out when he ended up driving behind a horse drawn carriage traveling on the wrong street. Then he became upset again when another tour bus parked in his spot. I was happy to be riding in the bus instead of driving.

It didn't take long to go thru the zoo. Robyn and Michael decided to do some more exploring. I went back to the hotel with RuthAnn and Paul. On our way back, we ran into some more SWC members going out for lunch, so we tagged along, ending up at a little coffee shop/deli. There I had the worst lunch ever-- though it initially sounded good. A sandwich with roasted eggplant, spinach and white cheese that had no flavor at all. The spinach wasn't sauteed or anything, so it was also tasteless,but it would have been fine if the cheese had some flavor. It was AWFUL! But I ate it up anyway.

Then it was time to go back. Several people by now knew about my stupid mistake with the flight arrangements, and they let me know Lorne got in OK-- ALONE. I hoped he wasn't upset with me. It was time to shower and get ready for the Welcome Party.

I had a blast meeting up with several people I had not seen in over a year. Some of them spoke ASL and I was happy I understood. I let one woman try out my pocket talker cuz she had never seen one. Robyn had brought some wine from New Zealand and was handing out samples. I talked to several others there-- One of the BOD members had some special fortune cookies made up with fortunes that said things like, "If you talk to my back, expect to pay." HAHA! Lorne showed up and assured me he was not mad. I felt better after that. We all had to move downstairs into the bar after 10 so the other hotel patrons could get some sleep. I should not post pics of people without their permissions, so I disguised them all with Photbucket tools. I LOVE Photobucket tools! I took the picture of the flamingoes above too, then turned them into a painting!

I miss Robyn. She's still texting me from CA, telling me where all she's going. Today while at my Weight Watchers meeting she let me know she was eating ice cream on the beach. . .PFFFT.

City of Brotherly Love and Saying What

I didn't realize until Sunday night that I was flying out in less than 24 hours. The plan had been to fly from Seattle to Philly together with Lorne Tuesday night/early Wednesday morning. Eric was going to drive us, and Lorne planned to leave his car at our house. We bought our tickets on-line at the same time using IM. But somehow I got mixed up and accidentally booked my flight a whole day early! I had a full day of work ahead on Monday, and little time to pack. **SHIT! SHIT! SHIT!**

The cost to change flights was $321. I know someone who actually MISSED his plane back to California from Philly and he was only charged $25 extra. Apparently it's better to miss your flight than to let them know your change of plans ahead of time. I'll remember this in the future. There were plenty of seats on the other flight! Anyway-- I flew alone and so did Lorne, and I felt like a complete ditz for messing up.

Luckily my room was already pre-booked for that night. Since Robyn planned to fly in a day early, and we were rooming together, I had a bed. And boy did I need it by the time I dragged in at 4:00 pm!! By that point I had been awake over thirty hours.

Robyn was sound asleep in her bed when I walked in. Her ordeal from New Zealand had been worse. Two whole days of jets, airports, and not sleeping. She looked so peaceful, I couldn't bear to wake her. I decided to shower before hitting the sack myself. But just as I was about to climb into my bed she awoke. We hugged and talked non-stop for the next hour or so while she got ready for a dinner date.

I'll be honest. I had been afraid I wouldn't understand her accent. I always get nervous meeting new people for the first time and I knew the accent would pose a huge challenge. Silly me. She had been concerned about the same thing. Out of habit we both tried signing to each other when words didn't make sense, but New Zealand sign is waaaaay different from American sign. We laughed at each other's signs-- many similar, and others, well. . . very different meanings. After about the third repeat, we wrote on tablets. As the days progressed, writing became unnecessary. Her NZ accent is adorable.

She invited me along to her dinner, but I was way too tired. Though I hadn't eaten since 6 that morning, all I could think of was sleep. Later, I mosied on down to the bar in hopes of finding a late-night snack and other SWC club members sure to be straggling in by that time.

I've been to enough of these events to know all you have to do is sit in the bar and wait for people with hearing aids or implants to walk by. Sure enough the second the elevator doors opened I saw a familiar face wearing hearing aids talking to a man I thought might be her partner. Turned out he was PAUL, my blogging buddy!! For some reason I hadn't recognized him at first-- maybe I was still too tired. We hugged, ordered drinks and food and sat down to chat. Paul made an SWC sign for the table, but it wasn't large enough for passers-by to see. I tried to get him to wear it on his head, but it kept falling off. Eventually he talked a waiter into making up a larger sign so that club members would see us as soon as they arrived.

As the evening wore on we had to move to a bigger table to accommodate everyone. Then we had to start pushing tables together when SWC'ers continued to pour in. What a night! The next day a group of us planned to go to the zoo--the very first in America. Robyn was anxious to take pictures.

Piece of Pie?

Something of an epiphany occurred while I was gone. Think about this. At the IFHOH (International Federation of Hard of Hearing People) Congress, people gathered from all over the world to discuss issues that impact ALL deaf, hard-of-hearing and Deaf people worldwide. It didn't matter whether we spoke, signed, were late-deafened, wore hearing aids, cochlear implants, or not. . . All were accepted and all communication modes accommodated. Some of us wore FM induction loops--smart-links or pocket-talkers, some had FM capability programmed into their implants, some used interpreters, some used computer assisted real-time (CART), some used plain old pen and paper to communicate.

Right after that conference, I went to another convention for a small group of HH/deaf/Deaf people--the Say What Club. Again, signers mixed with oralists. All workshops and ceremonies had an interpreter, CART, and looped rooms so everyone could understand. At parties, people used their FM systems, wrote on tablets, signed--some in different languages. All felt welcome and respected.

Being around all that positive energy was rejuvenating. I really needed that.

So -- My epiphany. The deaf/HH community is united and getting stronger by the day. The majority of us agree on issues of inclusion and access. It's a great big world out there, and I'm just so damn happy to be a part of it.

IFHOH Final Day -- Inspiration

IFHOH Day Four

Day four started out like the other days-- a long drive to the Wall Center, followed by coffee at Starbucks and attendance at workshops. Unlike the other days, I felt a little bit more harried than usual because I had to pack my bags early in the morning and take them with me to the hotel. The only thing I left behind was a package of Splenda.

The first workshop I attended was Become A Hero: Unleashing Your Potential by Michael Currie. Currie was downright entertaining and also motivational. He began his presentation with antidotes about his own heroes, relating story after story of his life interspersed with jokes. I loved the way he used humor to drive home the point that roadblocks shouldn't stop you from anything. Be creative. Be positive. Think outside the box.

The next speaker of this session was Dean Olson who is well-known in the Seattle area. His workshop Hearing Loss in the Workplace and Beyond was about using modern technology to assist in the workplace. Again the topic of self-disclosure came up, and also how to present oneself so that co-workers see the entire person rather than just your hearing loss. I wish this session had been longer. It could have easily been a two-hour workshop. I felt we only skimmed the surface.


The final presentation of this session was Communication Bloopers and Hearing Loss: Suggestions for Improving Communication Outcomes by Debbie Quinn. I had been looking forward to this one. Her own bloopers weren't as funny as some the participants shared, but she gave some great advice on how to deal with communication problems in the workplace. People shared a lot of funny stories. Sometimes being HH/deaf is hilarious.

After this session we had lunch. Since we were on our own that day, we walked to a little supermarket/deli across the street from the hotel. I was surprised by the variety of salads, sandwiches and soups. It was difficult to choose, but I finally settled on something that looked like tabbouleh with dill pickles in it. An odd combination, but not too bad. This was the only day it rained, and it literally poured on us as we walked back to the hotel. The Canadians were all apologizing, as if they could control the weather. I just smiled. Since I live in the Seattle area, I totally understood how they felt. It's so embarrassing when it rains on out-of-town guests during the summer, but I happen to like summer rain.

The next workshop was Perspectives from a Hard of Hearing Audiologist by Jamie Grew. Like Currie's presentation, he was funny, motivational and interesting. He grew up with hearing loss and he now works as an audiologist. In addition to relating his own personal story, he found time to share with us tidbits of info about Canadians and Canada. For example, Superman was created by a Canadian. As an HH audiologist, Grew said he can do anything except listen to someone's hearing aid when it goes bad. Since he works in an office with other audiologists that isn't a problem. The benefits of having an HH audiologist are many-- mainly because he has actually tried out the hearing equipment he sells and he's able to relate a lot of other information to his patients about ALD's and support that most audiologists leave out-- since they've never worn hearing aids. If you think about it, it's like a car salesman who doesn't drive. I was so impressed with Grew's presentation I've actually googled to see if there was an HH audiologist in the Seattle area.

Finally, the last workshop of IFHOH was Hearing in Harmony- Life as a Deaf Audiologist by Tina Childress. I've met Tina before when she spoke at my Say What Club convention last year. She's such a great speaker we had her back again this year. Her story is interesting and inspiring. She became deaf after becoming an audiologist. Talk about coincidence. In many ways she was more prepared than the average late-deafened adult. She had the audiology background and knew ASL. And yet she was shocked by how deafness affected her, even with all her knowledge. Whenever I hear her story I'm deeply moved. Like the others, she hasn't allowed deafness to stop her. I had lunch with her the following week in Philadelphia. She's an amazingly fun, motivated, intelligent person. I'm so glad I've had the opportunity to spend time with her.

Then it was time to go home, do laundry and repack. Next up-- Philadelphia!


IFHOH-- Day Three, Part II
IFHOH Day Three, Part I
IFHOH Day Two
International Federation of Hard of Hearing Congress -- Part 1

IFHOH Day Three, Part II

Day three-- part II

The first workshop we attended Friday was called Accessibility Awareness Collaboration and Hard-of-Hearing People given by Sami Virtanen from the Finnish Federation of Hard-of-Hearing People. Like the the real-time text workshop, I found it exceedingly difficult to pay attention. Tired of reading CART, and feeling full from the large lunch I nearly fell asleep. The late night, early morning routine was catching up with me. Virtanen spoke mainly about Finnish policies, especially with regard to required captioned television programming. The US has had that since 1990. I think the information presented was probably more useful to those in the political arena of policy change, because several representatives from HLAA, CHHA and various other HH/deaf organizations around the world stood up to comment.

I wanted to leave then, but Creating Consumer Awareness through Policy Change turned out to be a surprise. Sherri Collins was a firecracker from Arizona. After waking us all up by handing out prizes she detailed her personal hearing history, and drew a thought-provoking analogy between independence and accessibility. It was US Independence Day. I had forgotten.

Next, Sherri expanded on events leading up to a policy change requiring Arizona audiologists and hearing aid dispensers to provide information about the benefits of telecoils to consumers. Telecoils seemed to be a recurring theme at IFHOH.

Following her presentation, a few people commented they felt a law seemed unreasonably harsh. A man from Michigan spoke about how pressure had been placed on an airport to loop it without resorting to policy change. A woman from New Zealand detailed a sad story about an HH/deaf American tourist who was hit by a passenger train when he got off at the wrong stop after failing to hear an announcement. All NZ trains were looped for telecoil after that. Sadly, she said, it took a death to change policy.

One man remarked that telecoils should be called "accessibility coils" or a-coils since they were used for much, much more than the telephone. Discussion ensued about telecoil vs infrared and privacy concerns in courtrooms, federal buildings and other sensitive areas, since people with telecoils can sometimes hear outside looped rooms with the doors closed. Others protested that hearing aid manufacturers were making smaller, more attractive aids for the Baby-boom generation, dropping t-coil in the process. Two more concerns were voiced:

1) Policy to require telecoil induction loops in public buildings could become obsolete within a few years if hearing aid manufacturers stopped making hearing aids with telecoil capability.

2) Hearing aid manufacturers should be encouraged to include telecoil capability in their newer models because of the many, many benefits.

The final workshop of the day was Experience Working for and With Those With Meniere: A Non-Medical Perspective I attended this one mainly for my husband who was diagnosed with Menieres about six years ago. Dr. Henk de Graaf from the Netherlands reported on the results of a twenty-five year study of Menieres patients in his country. Then he led a discussion of alternative treatments for Meneires. One woman had some success with a chiropractic procedure where the feet were adjusted. Several people mentioned using vitamins, exercise, acupuncture, eating certain foods, not eating certain foods, reducing stress, yoga, marijuana-- you name it. Someone else mentioned the Meniett device. Hoping to discover something new I could share with my husband, I came away feeling deflated. No one knows of a cure.

That night Lorne went to a football game. In the mood for something ethnic, Kate, Ann and I sniffed our way up Davie Street, and found a little Mongolian Grill.


IFHOH Day Three, Part I
IFHOH Day Two
International Federation of Hard of Hearing Congress -- Part 1

IFHOH--Day 3, Part I

IFHOH Day Three. SideKicks in Canada? Public loops? Real-time text? In the interest of making each of my posts a little shorter and more readable, I have decided to post about IFHOH in smaller segments.

Friday, we made it to the Wall Center just in time for a quick coffee and lunch! None of the morning workshops appealed since they were either about cochlear implants or how to deal with hearing loss in young children. Both of us have grown hearing children and neither of us are currently considering a CI.

We learned from Gunnar Hellstrom, one of the real-time text speakers, that his company Omnitor was hosting Friday's lunch. Hellstrom is a Swedish CODA (Child of Deaf Adults) who has a vested interest in solving the problem of deaf/HH mobile phone communications. During lunch he launched a captioned video with a plug for real-time text. Sitting at a weird angle to the screen, I couldn't hear or see the captions. The story must have been cute or funny because people chuckled throughout, though the actual language sounded foreign-- perhaps Swedish? I could never understand the difference between real-time text vs IM-ing or texting someone. I feel like such a dunce. Again, lunch offered a delicious vegetarian option-- the best tomato soup I've ever tasted in my life and roasted vegetables on something that looked like a hoagie roll. Lorne left his soup bowl half full and I was tempted to ask if I could finish it off. But I didn't want to act like the pig I really am.

Luckily a pair of bright red of Phonaks caught my attention. The Canadian woman wearing them happily explained the many hearing advantages of her Phonaks and smart link. I couldn't resist asking how much they cost. She spent close to $10,000 along with her fancy smart-link system! AND NO-- they weren't covered by Canada's National Health Plan. She paid out of pocket-- every last cent. UGH!!

Another Canadian woman began to complain loudly about how you can't get Sidekicks in Canada, only Blackberries. I picked up on the conversation a little, only because Kate has a habit of signing while talking. Probably this woman felt left out while the rest of the table thumb danced to email, IM and text messages between lunch courses. I like my Sidekick, but I wanted to tell her that Blackberry was supposedly better. I haven't tried iPhone. She couldn't hear across the table and our accents got in the way of lip reading. She didn't sign. Too bad. She said Blackberry costs a hundred dollars per month where she lives. I don't know if this is true all over Canada, but I felt bad for her. The deaf/Deaf/HH rank among the world's most under-employed because of the stigma of hearing loss. It seems a double-whammy when people cannot afford the very tools needed for accessibility. I wondered about the benefits of a real-time text alliance like the one they're developing in Europe between Omnitor and other companies.

IFHOH-- Day Two

We missed the first Plenary Session-- something I would regret for the next several days whenever people mentioned "that deaf man who flew around the world." His fantastic story inspired everyone who heard it. But I overslept, then we ran into traffic, and by the time we got to the Wall Center we wanted-- no-- NEEDED-- coffee. After all the previous walking around the day before to find coffee shops, we discovered the hotel itself had a Starbucks right inside! AWESOME. This meant we could get our coffee fixes all day long without even leaving the hotel.

The first workshop I attended from 11-12:30 was Demystifying Hearing Assistive Technology given by Beth Wilson and Tina Thompson. Though this workshop was about making the most of the assistive technology available to you, the room wasn't looped. Those of us hoping to benefit from our telecoils couldn't. The Irony! I learned later that NONE of the workshops were looped, and I must admit I was shocked, since IFHOH was a world wide convention for hard-of-hearing and deaf people, most of whom wore hearing aids or CI's with telecoil capability. I'm accustomed to looped meeting rooms whenever HLAA, ALDA and the Say What Club have events for the hard-of-hearing/deaf. Evidently I wasn't the only one expecting looped rooms. At a later workshop it was pointed out that most all public buildings in Europe are looped for telecoil. The lack of FM loops was a HUGE oversight in my opinion.

And just an aside here--Though this was a major Sheraton hotel, we found out by the next morning Kate and Ann had a terribly hard time getting their captioned TV to work. A handyman was called up, and even HE failed. Un-frickin-believable!! A MAJOR Global convention for HH/deaf people was being held in this very hotel and their staff hadn't been briefed on how to work the captioning? Reminded me of that awful experience I had in Albuquerque, NM last year. They finally got it working next day after going thru several handymen. ARGGHH!

However, getting back to the workshop, these two speakers-- Beth Wilson and Tina Thompson-- gave an excellent presentation with fun visuals and humor. The information presented wasn't new to me, since I've been to many, many hearing loss conventions, workshops, and meetings for the HH/deaf over the years. The session would have been useful to those new to hearing loss. I came away with one great quote from Helen Keller. "When you lose your sight, you lose things; when you lose your hearing, you lose people." I would add to that-- When you lose your hearing you gain "things." I've got gadgets up the kazoo to help me hear, see and feel my world.

I was pleased to see two interpreters just ahead. One of them signed he was there for the woman next to me. I told him I was learning ASL. He smiled and split his attention between the two of us. I haven't used ASL since my last class over a month ago, and worried I had lost vocabulary. It was a good experience to be able to watch the interpreters and understand without having to read everything on CART. Unfortunately, I didn't see them again until the very last day. They had been hired specifically for that one woman, not the entire convention. This was another huge disappointment, however with up to five workshops at each session, and three sessions a day not including the morning plenary-- I realized that hiring interpreters for each workshop would have run up the tab up to five figures. Considering that most of us didn't sign fluently and that many of those who could sign didn't use ASL since they were from other countries, it made little sense to offer compulsory ASL interpreters for all workshops. Everyone was accommodated by CART. Everyone could read spoken English. English is the official language of IFHOH.

The second part of this session was Empowering Strategies given by Janice Aaron Moore. Like the first two, she was gifted in grabbing your attention, emphasizing self-disclosure as the first step toward empowering strategies with many colorful personal stories. Again, I think this would have been a great workshop for someone new to hearing loss. I'm long past hiding my inability to hear. Self-disclosure isn't a problem.

Next, we had a fabulous lunch. Being a vegetarian I wasn't sure what to expect, but as luck would have it, I ended up sitting next to some Muslims from Kuwaitwho didn't eat pork . The menu for the day was some kind of salad with bacon bits. All the Kuwaitis ordered a 'vegetarian' option, so I did too-- and I'm glad I did. The salad was delicious.

After lunch, I went to one of the best workshops of the entire Congress, in my opinion, The Evolution of Hearing Aid Technology: New Developments given by Dave Gordy. It was here I learned about the Phonak Naidas and Oticon Epoq. OK-- I'll admit it right now. . . My hearing aids are almost nine years old. They're still working well, but obviously they don't have any of the stuff the new hearing aids have--auto telecoil detection and sensors that know when to zero in on high-pitched speech sounds, etc. I'm not really into automatic everything. Mine were state-of-the art when I bought them but they're SO OLD now.

Researchers are on the brink of solving many past problems associated with hearing aids-- namely how to deal with the common ski-slope. The Naidas take high-pitched sounds and somehow transfer them to a mid-range frequency. What it means for people with profound ski-slope hearing loss is they are able to hear birds and several consonants in the high-pitched frequencies again. I am trying not to get my hopes up too much, but I couldn't help wondering if I'd be able to hear the flutes in Bach's Brandenburg concertos again.

I've looked through the Phonak brochure and pretty much decided on a hot color next time-- something that will make a statement rather than the bland, icky medical-looking beige. I'm thinking transparent purple, but they also make a zebra striped aid that's tempting. Hard to decide. Another great, but probably insignificant feature to some of you is it's waterproof. Living in the Seattle area, I do appreciate that. The smartlink FM system with blue tooth capability is another fantastic feature. Finally, It's a power aid. I learned during the IFHOH I wouldn't benefit from the Epoq and other aids like that because my hearing loss is too great. Thin tubes and open ear molds are out.

Gordy said all the "newer" aids were being built without telecoil capability. The Europeans in the audience were upset by this bit of news since most of the public buildings are looped for telecoil. I double-checked with the vendors in the Phonak upstairs to be sure the Naidas had telecoil. Phonak has no plans to drop theirs. At a later workshop, telecoil capability came up again, and we were assured that Starkey will also continue to make aids with telecoil.


The final workshop of Day 2 was Real-Time Text: An Essential Accessibility Feature given by Arnould van Wijk, Raymond Kruyer and Gunnar Hellstrom. I have to admit I didn't get much out of this session at all. The information presented was far too technical and dry for this blond. Two of the presenters spoke in heavy accents, which meant I had to read almost the entire presentation instead of their lips. Eye-strain was getting the best of me as letters began to dance and blur on the screen. What I could read didn't make sense-- either because it was too much to process after all the other info I'd been taking in, or the translations by the CART transcriptionist were confusing. Also, my mind kept wandering back to the Phonak Naidas and the Brandenburg Concertos. I was tired and ended up leaving early.

That night we all walked down Robson Street looking for food, then finally sniffed our way upstairs to a little bar and grill tucked in a second-floor corner spot above street level. Food was scrumptious. I got a vegetarian pizza with roasted asparagus and some kind of tasty cheese-- I'm thinking chevre-- but I could be wrong about that. Vancouver, like Seattle, is a great place to eat vegetarian.

Link to IFHOH Part One.

International Federation of Hard of Hearing Congress 2008-- Part 1

This is just a quick recap of the IFHOH. (International Federation of Hard of Hearing) Congress in Vancouver, BC.

Since I hate driving in Vancouver, and didn't want to mess with long lines over the border crossing during TWO Independence Day holidays, I took the train. The IFHOH began a day after Canadian Independence Day and ended a day after US Independence Day. The train proved to be a perfect choice for my commute, as I enjoyed a relaxing ride sipping coffee while watching scenic beach views stream past the snack bar window. I had programmed my MP3 with soft rock and bought new noise reduction headphones just for this. Eventually the gentle swaying of the train along with warm coffee in my belly put me to sleep, and before long I had arrived at the train station in downtown Vancouver.

Two interesting things happened on my journey. First, I told the porter I couldn't hear well as I boarded the train. He smiled and made a concerted effort to talk directly to my face. For emphasis he pointed in hand gestures when indicating the way to my seat and where to put my suit case. He also clearly explained where the dining care and rest rooms were, again pointing while facing me to make sure I understood. I am not new to train travel and didn't need all the attention, but I appreciated his courtesy. Second, as I went through customs, I had to tell a border guard I couldn't hear well when she began grilling me on why I was visiting. Like the porter, she looked directly at me, enunciated clearly and talked slowly, then she actually SIGNED "thank you" as I walked away. That made my day. I had the feeling train staff and customs had been put on notice many deaf and hard-of-hearing would be traveling north from the states.

Canadian friend Lorne waited on the other side of customs to greet me when I walked through the gate. He grabbed my bag and off we went to the beautiful Wall Center in downtown Vancouver for registration. Unfortunately I didn't take pictures at the Convention, other than those of Kate with HER camera, who will be writing up her experience for a magazine-- but this picture was taken a week later at the SWC Philly Con where he attended, again with me. We took a quick lunch before returning to the train station to pick up Kate and Ann, who also came by train. While they settled in, Lorne and I hit the wine and cheese welcome party. We had hoped there would be enough food to call it a dinner, but we barely managed a few small slices of cheese before the food ran out. The room was crowded with people from all over the world. Later at opening ceremonies we learned over 27 different countries were represented. It was the largest recorded gathering of deaf/HH in Canada's history. People spoke in other languages and signed everywhere.

The opening ceremonies had CART in English (the official language of IFHOH) on three large screens. With the room filled to capacity, I ended up standing in the back straining to see. CHHA went all out welcoming everyone. They even had one CART devoted to Japanese, (or maybe Chinese-- I was never sure which.) Representatives from all 27 countries were called up, each waving their respective flags. Then the ceremony ended with a native drum march of Canada's "First Peoples." Hearing loss and deafness isn't confined to one nation or one race. We are a nation unto ourselves. During the next four days I would come to feel a bond with people from all over the globe as we examined each other's technological gadgets, and shared our concerns, hopes and dreams for a barrier-free world.

After the ceremony we rushed out to browse the vendor booths brimming with freebies. One woman from Sweden demonstrated a computer program she had developed for teaching lip-reading skills. While I found the concept fascinating, I already lip read quite well and wasn't interested in spending $110.00 on it-- though it was a very good piece of software and would be helpful to someone who has trouble lip-reading. Another booth featured little balls that you put on the feet of chairs called "hush-ups". They looked exactly like blue tennis balls, and Lorne joked he had a basket of old tennis balls somewhere he could put to better use. Many other booths were devoted to hearing aids, loops, phone systems, alarms and alerting devices, hearing dogs, medical ID bracelets, and basically anything you can think of relating to hearing loss.

We rushed through the exhibits as it became more crowded and noisy. I felt like I was on noise overload. We grabbed a cup of coffee and headed down to the beach within walking distance of the hotel. Noting the many coffee shops along the way, I made the remark that Vancouver is just like Seattle only full of Canadians. At the beach we walked around a bit more, socialized with other deaf/hh people and finally drove back to his house-- where I stayed. Lorne's wife Joanne and their little puppy, Hunter, greeted us at the door. Next, their earless cat, Tux, wandered into the room to see all the commotion. We went to bed early in order to get up for the Plenary Session next day.

Stay tuned for Day Two!

I've been away

I feel badly I've been neglecting my blog here. The past two weeks I've been attending back to back hearing loss conventions. The first was in Vancouver, BC. Maybe some of you went to the International Federation of Hard of Hearing Congress 2008 (IFHOH), though I didn't recognize anyone other than those I already knew from the northwest. Over 500 deaf/HOH people were in attendance AND it was the largest gathering of deaf/HH people ever in Canada. Twenty-seven different countries were represented. I attended eight workshops and took tons of notes. The most informative was on new technologies in hearing aids and another on Menieres, though most all offered insight into how people experience hearing loss all over the world. I came away with a sense that accommodations for the deaf and hard-of-hearing are a problem everywhere. If one country offers a certain accommodation, they do not offer another. I'll share more information about that over the next few weeks, but I'm busy attending another Convention in Philadelphia now for the Say What Club.

I just flew in this afternoon and I'm rooming with Robyn, the Ambling Rambler who came all the way from New Zealand. http://robyncarter.blogspot.com/2008/07/gone-to-usa.html So far we've had fun comparing sign languages and trying to understand each other over our thick accents. I'm enjoying her immensely. Tomorrow we have big plans to go to breakfast, where she's dying for me to try an awful smelling concoction on toast called Marmite that smells suspiciously like congealed beef broth. She assured me it's vegetarian. I can't imagine eating it on toast, but she said it's good with tea. New Zealanders like their hot tea even when it's 90 degrees outside. Another goody she brought from home is called Pineapple Lumps. They're very tasty little bits of chocolate covered fruity flavored squares, and I've snuck three more while she wasn't looking (don't tell). After breakfast, we're off to the zoo so she can take pics of American animals -- snakes, raccoons, squirrels, etc. Workshops don't start until Thursday.

Many SWC-ers arrived early. I had dinner with eleven of them this evening downstairs in the bar. Then came back upstairs to crash as I hadn't had any sleep in nearly thirty-six hours. Now I'm wide awake and it's bedtime.

I'll see Tina Childress for the second week in a row because she spoke at IFHOH last week and will be speaking again here at the SWC Convention this week. For those of you who don't know her, she's a late-deafened audiologist with two cochlear implants. Fascinating story, since she learned ASL and became an audiologist BEFORE losing her hearing to an auto-immune disease.

That's all for now. I'll fill you in later on the workshops and try to send pics too.