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.

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!

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!