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.

Learning the Deaf Way of Life

Not long ago in a recent post (The Blame Game) I mentioned the need for Deaf support to help the late-deafened transition into deafness. My article focused mainly on the difficulties of learning ASL in a hearing environment, but there are a number of ways a Deaf person could support late-deafened people through the transition of learning to live with deafness.


Wendy beautifully described some new situations she's dealing with now that she can no longer hear at all. How do you use a TTY? Where is the best place to put a flashing fire alarm? How can it be hooked up to notify you all over the house?

It might sound odd to some of you, but growing up hearing I was never exposed to any of this Deaf stuff. I didn't know phones with text and blinking lamps, and shaking bed alarms existed. My entire family is hearing and all my friends used to be hearing. I was the first hard-of-hearing-going-deaf person I ever knew. When my hearing loss first began there was no internet, and there was no SHHH or ALDA in my area. My audiologist didn't think to tell me how to negotiate every day living, such as what to do if you can't hear your own fire alarm.


You would think an audiologist would offer some daily living support to a newly late-deafened person besides just hearing aids and/or cochlear implants, but in this regard audiologists are clueless. For example, at my last audiology appointment my audie pointed to my Sidekick and asked, "What's that?" She had never seen one before. When I explained what I could do with it, she was amazed. I too was amazed-- at her ignorance in this matter. Surely I wasn't the only patient she's ever had who couldn't use a cell phone? Audiology clinics focus on helping people hear, NOT on all the accommodations deaf people can use when they CAN'T hear. It's a void that needs to be filled, for sure, but who should fill it?

Everyone-- both hearing and deaf-- seem to think it's the OTHER group's responsibility to help us adjust. So by and large there's no support for the late-deafened, except other late-deafened people, who are mostly learning as they go.

Gosh-- it would be so great if a Deaf veteran took my hand and said-- "This is how to do it!" I'm still trying to figure out the Video Phone I got from Sprint months ago. The problem is it was linked to a computer that died and everything's been wonky since. I'm not sure what to do, so I haven't used it in months. I'd love to use it to practice ASL with a few people I know. To be perfectly honest I'm still totally confused about all the different phone options for deaf people and how they work. It's mind-boggling.

It wasn't until I found SHHH (now HLAA) I learned a few things-- about Harris Catalog, FM systems, my deaf rights and pocket talkers. I found them on my own twenty years after I started losing my hearing. Turned out there's a wonderful support center for the Deaf/deaf/Hard-of-hearing in Seattle, but I hadn't heard about them either. Through HLAA I found another group, the SWC, which is on-line. I can't tell you how important their support has been to me. But my point is, I merely stumbled onto both these organizations twenty years AFTER losing my hearing. No one was there to help me cope for twenty years.


Whose responsibility is it to support deaf/Deaf/HH people?? Other deaf/Deaf/HH people. We would be much more powerful and effective as a community working together. Maybe it's time to recognize none of us has the right answer for everyone. Maybe it would be better if we just reached out to those confused hearing parents of Deaf children and newly late-deafened people and said, "This is what works for ME, but there are other ways too."

We're all in this together.