Advocacy and the OHL Community - Part 1

This is my keynote address for the SayWhatClub 2007 National Convention. It was a wonderful convention. Our full coverage begins here.

This is part one of four parts.

Part Two

Part Three

Part Four

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Good evening, everyone. I am so excited to be here at the 2007 SayWhatClub conference. I have long believed that getting involved with the SayWhatClub is one of the very best things people with hearing loss can do, and I recommend it often. I've been involved off and on for many years, and I'm so happy to be hooked up again for this convention.

Hasn't it been a wonderful convention? I want to thank Cathy and Linda and everyone who had a role in organizing this great event. We've had excellent workshops, great camaraderie, a wonderful magic show, and various individual experiences. Some of us have won a few dollars in the casinos, and others have lost. But mostly we've enjoyed a variety of shared experiences with our SayWhatClub family.

I first became involved in the hearing loss world back in high school, when I started dating Char. We met in Senior English. Her purse was broken and I fixed it. And that's when she set her sights on me!

I say that's when I became involved in the hearing loss world, but I wasn't aware of it at the time. I didn't know she had hearing loss. She did have a bit of a reputation for being stuck up, because she didn't always answer people when they addressed her. Of course they also didn't know that she had hearing loss and that was the reason she didn't always respond when people talked to her.

Sometime during college she told me that she had a deep, dark secret that she had to share with me. She wasn't very quick about sharing it, so I was contemplating what kind of horrible secret this sweet South Dakota girl could have, and of course I never came close to getting it. When she admitted that her horrible secret was that she was hard of hearing, I had to laugh, because that was certainly among the least significant things she could have told me! Like a normal hearie, I was clueless to the impact of hearing loss on relationships. In retrospect, of course, we both realize that hearing loss has had a profound effect on both of our lives.

We got married a couple of years after college, had two kids, and lived what we thought were fairly normal lives. We did have some communications issues. In fact, they were so severe that at one point we were separated for a year, and seriously considered divorce. And again in retrospect, we believe that hearing loss was at least partly responsible for our communications difficulties and our separation.

But at the time we didn't know that, and we didn't really attempt to deal with hearing loss issues until about 1995. At that point, Char realized that her hearing was getting worse, and decided it was time to do something. So she took a sign language class, and she asked me if I'd be interested in taking it with her. And I did. I quickly became fascinated with the language, and with Deaf culture, and it became for me much more than just a way for the two of us to communicate.

In 1996, we discovered ALDA and attended our first ALDAcon, which was in San Francisco that year. We both talk about that conference as being a life altering experience, because it was our first introduction to the idea that there were lots of folks who struggle with hearing loss and the issues that accompany it. And that there are things we can do to deal with them. And that there's just something very special about being with a group of people with hearing loss! So we were on a natural high for a while after we got home, and we have attended five or six ALDAcons since then.

Our next hearing loss adventure was the retreat at the Asilomar Conference Center in Monterey in 1997. That was our first introduction to the SayWhatClub and some of the people who were with it. Bob and Ling Elkins where there. Larry Littleton was there. And probably some other folks from the early SayWhatClub that I don't recall right now. By the way, that retreat was organized by Edna Shipley-Conner and Bill Zitrin, and we have the pleasure of having Bill here with us tonight! Bill!

By 1999, I thought that I had learned quite a bit about hearing loss and about how to deal with it, and I noticed there was almost nothing on the Internet for hard of hearing and late deafened people. There was all kinds of stuff for culturally Deaf people and the signing Deaf community. So I thought it would be a good idea to start a website for the other people in the hearing loss population, those who don't sign and who really just want to remain in the hearing world. So, that happened in 1999. The website is called Hearing Loss Web (http://www.hearinglossweb.com), and it remains one of the premiere websites for people with hearing loss. Also in 1999 I started publishing a weekly e-mail newsletter to provide people with information about hearing loss, and the newsletter has continued to grow and evolve.

Char and I attended the SayWhatClub conference in San Diego in 2000. In fact, I was on the Host Committee for that conference. Bonnie Eggert was chair, and she is also with us tonight. Bonnie!

By the way, Bonnie and Bill were married right here in Las Vegas about a year ago.

Several other people at this year's conference were also at the 2000 conference, including Linda Binn, Jazzy, Cathy, Suzanne, Bonnie and Bill. That conference was also a wonderful experience. It was held at a little historical hotel in the Gaslamp section near downtown San Diego, and we had a wonderful time.

The keynote speaker at that conference was a man named Tom Galey. Tom is culturally Deaf, and at the time was the executive director of Deaf Community Services, which is the local service agency for the Deaf in San Diego. We generally refer to it as DCS. Char and I were on the board at the time, and we were the ones who suggested Tom as our speaker. His topic that night was expanding his agency's services to include hard of hearing and late deafened people. If Tom were speaking here tonight, he could use the same speech he delivered in 2000, because DCS has not made a lot of progress towards serving hard of hearing and late-deafened people in the last seven years.

My experience with Deaf Community Services was a real eye-opener. The reason I was on the board in the first place was to try to get the agency to expand its services to include hard of hearing and late-deafened people. At the time I thought that should be a pretty easy thing to do. It seemed like a natural expansion of the services they provided, and besides, they had been claiming to serve hard of hearing and late-deafened people for years! I thought their main obstacle to serving this population was that they didn't really know what services were needed. I thought Char and I could provide that information and DCS would implement the suggested services.

After three years with no progress towards that goal, I gave up and left the board. And at that time we started a local service agency for hard of hearing and late-deafened people. That agency, called Hearing Loss Network (http://www.hearinglossnetwork.org), continues to this day, and provides what services we can afford to offer on a very limited budget.

Part Two

Part Three