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.

Advocacy

Last night during ASL class, my teacher came up to me with a copy of last Fall's ALDA (Association of Late-Deafened Adults) newsletter. My picture was on the front. I'd forgotten I had written that article for ALDA. She had found a copy of the newsletter at her audiologist's office during an appointment last week. And she was surprised to find one of her students on the front. Though she knew I was late-deafened, we've never talked about my involvement in ALDA or HLAA or advocacy.



In truth, I'm not much involved in ALDA at all. But I know the president. She had been looking for articles on advocating for yourself, in which a deaf/HH person was successfully accommodated in a pubic situation. So I wrote about my success with getting CART for my son's graduation ceremony last spring. Because of CART I was able to read what the speakers said, and I understood the lyrics of songs the choir sang. Without it, I would have understood N-O-T-H-I-N-G. It would have been a night of sitting in a crowded auditorium wishing I could hear while others laughed at jokes and cute comments the new grads made. I had to fight a little to get CART in place, but because I did, I enjoyed my son's graduation night like everyone else around me.



Was it too much to ask? Almost every parent thinks of graduation day while their kids are growing up. I was there to send my son off to school his first day of kindergarten. I went to all the parent-teacher conferences. For years, I helped set up for PTA events, sold tickets, collected Campbell soup labels for a kick-back in school supplies to our district, and I cleaned up after school programs. I scooped ice cream for fundraisers, baked cupcakes for school parties, drove carpools of kids on field trips, made cookies for principals, had my car washed when it didn't need it for the school band or cheer leading squad. I attended meetings with school counselors and teachers to advocate for my son over the years. (He ALSO has a disability.) In return I helped in their classrooms. Of course I wanted to be a part of the graduation ceremony too. I am proud of him. He graduated with a decent GPA, and was accepted to a good university. His accommodations helped him to thrive in school. If I couldn't HEAR my son's name being called to receive his diploma, at the very least I wanted to READ it-- on CART!


When the organizer of the graduation ceremonies balked at providing CART, I told him point-blank, "Deaf people have children and pay school taxes too."


So my article went into the ALDA newsletter and I forgot about it until yesterday when my teacher brought it up to me.


The thing is I wasn't born deaf. When I was a kid I never dreamed I'd be in this position of having to fight and educate people about deafness wherever I went. I am shy. I wasn't prepared. I didn't CHOOSE this life. For years, I wondered, "WHY ME?," which is so typical for late-deafened people. Why me? It wasn't until I met other strong late-deafened advocates who educated me about ADA rights that I began to think differently.


Why NOT me?? Slowly I began to see my deafness in new ways. I have a mission to educate non-deaf people and newly deaf alike. I can help others just like me adjust to their deafness, like those who helped me when I was mired in self-doubt. When I learned my youngest son had a disability I realized my deafness had prepared me to fight for HIS rights as well.


At my last job interview, I was asked what I'm most proud of in terms of life accomplishments. My answer? Because of hearing loss I face challenges every day most people can't imagine. I am proud I've overcome, learned to adapt and that I've lived a relatively comfortable life despite those challenges. I could see they were taken aback by my honest answer. Yet, I wanted to be clear that I was "disabled" AND capable. Afterwards I thought maybe I blew it. But they hired me.

I don't want pity. I want and deserve equal access.


Advocacy at its best is working, living, playing with hearing people while proving you ARE capable!

Dear Rachel

I loved your letter and the way you advocate for yourself.

For those who haven't seen it, go here--http://cochlearimplantonline.com/blog/?p=90

Dear Dr. ——————,
I’m looking forward to being in your 20th Century Art History course this quarter on Mondays and Wednesdays at 8AM - 10:30 AM. I was born profoundly deaf, but I hear with an extraordinary technology, cochlear implants, and I hear like an almost normal hearing person. Because my hearing is still not perfect, I will have a few accommodations which include an assistive listening device. I will have a speaker near my desk and you will wear a microphone so that I can hear you well. I would like to meet you at least 15 minutes before class starts this Monday so that I can give you my accommodation memo and show you how to use the assistive listening device. Please let me know if this will work; otherwise we can certainly arrange a different time.
Thank you in advance,
Rachel Chaikof

By and large, I've found the majority of people really do want to accommodate us, however they often feel confused because they don't know what to do. I'm sure telling them about your equipment and what you'll need from them ahead of time goes a long way toward relieving their stress over having a deaf student in class.

I myself do this at work when we have subs or new coworkers. I know when they first learn I'm deaf, they're frightened of many things, but mainly they're afraid they will do something wrong to offend me by not accommodating me properly. Once I go over my needs, and how my equipment works I can see the relief on their faces. I also crack a few jokes, so they understand I'm not at all sensitive about my deafness.

It seems strange that we have to go to such efforts to relieve OTHER PEOPLES' anxiety, but I have learned this from the experts-- disabled people in wheelchairs. You see, since I work with the public I also sometimes feel nervous dealing with people who have special needs. If they seem comfortable with themselves and tell me what they want/need, I feel so much more confident with them.

We can't expect hearing people to bend over backwards for us without first explaining our needs. We must realize sometimes we are the very first deaf people they've ever encountered. They've seen all the stereotypical deaf people on TV and they find the situation frightening. They are wondering weird things. What will if happen if she starts signing? What if I need her attention and she can't hear me? What if I can't understand her speech? Why does she frown at me when I speak? Her hearing aid is making a loud noise, should I say something? (I have a tendency to frown at people who are difficult to lip read. It's a frown of concentration, not anger.) So I answer all these questions up front. I often show them a sign or two for fun. Everyone at my branch knows the sign for bathroom, for example. I tell them ahead that I frown when I don't understand their lips, and to pat me on the shoulder when they ask a question that I haven't responded to. This goes a long way towards helping them accept me.

You are on the right track with your letter.

It's interesting reading about your photography. My daughter also loves photography and originally thought she might major in art, or English. She couldn't decide. Then she took a psychology class and was hooked. She's in her fourth year of psych. It's going to be a long haul.