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.

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.

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.