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September 6, 2013

Hats Off to HLAA.

I’m often asked: What is it that motivates you to travel across the country to attend a Hearing Loss Association of America (HLAA) convention? The answer is easy. These conventions are inspirational, educational, motivational, and heart warming!
I look forward to HLAA conventions like a kid looks forward to a week of summer camp. It’s a place to meet and greet old friends from past conventions and to make new friends. It’s a place where hard of hearing people like me can feel at ease in a crowd, even in background noise. It’s a place where other people “get it” about hearing loss, and no one says, “Never mind, it wasn’t important”!
Mutual support, of the self-help kind, is therapeutic to those who share a common concern: in this case, hearing loss. Besides support, conventions are the place to learn about developing technologies and advocacy options that have made, and will continue to make a positive difference in the lives of people who do not hear well.

HLAA conventions provide an excellent platform for learning in a format that embraces and understands communication access. All workshops and social events are equipped with technologies that work for us. Events are captioned. All events — from workshops to meetings and social activities — provide either hearing loops or infrared technology. This is an awesome change from our norm. Being able to participate fully is an amazing feeling; one that hard of hearing people rarely experience in the real world. The especially good news is that, thanks to this organization and the people it has motivated and educated, these technologies are becoming more available in the “real world” in which we live.

The first convention was held in Chicago in 1984. I was apprehensive about going. I had become so used to not being able to participate in group events, that I wondered if I had lost my sanity by deciding to attend. My husband encouraged me, and I felt very brave! Walking into a sea of hearing aids, all in one hotel, was an experience I will never forget. Here were people of all ages, people just like me, who were there because they were curious enough to gather the courage to attend — just as I had. We had no idea then how many positive things would happen because we took that first courageous step.

Most of us had been told that hearing aids were the only help available, and we all knew that hearing aids fell short, especially in noise. We had no knowledge of technology that went beyond hearing aids. There were no cochlear implants. There was no captioning. We all struggled in noisy places, and we wondered how we could possibly participate at a convention. None of us expected to sit in a banquet hall and actually hear a speaker. We wondered how we could possibly share our stories or hear others share theirs, even in small groups.

We did not arrive expecting miracles, but we left in awe of what we had experienced. That awe had to do with both induction loop (hearing loop) technology, and from the mutual support we experienced from meeting others who were just like us. We understood each other. We were motivated to share this information with others back home, and also to keep in touch with those very special friends we had met in Chicago. Several of us met again in Portland, 29 years later!

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Being able to participate fully is an amazing feeling; one that hard-of-hearing people rarely experience in the real world.

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In 1984, medical research on deafness was sparse. Cochlear implants were being talked about, but were not considered a viable or practical option. Today, there are many more technical and medical research bodies, including the National Institute for the Study of Deafness and other Communication Disorders (NIDCD) within the National Institutes of Health, which was founded in 1988, working to develop better hearing assistive technologies, more sophisticated cochlear implants, and more. Today there is even talk about stem cell therapies actually curing some forms of deafness. It has been fascinating to watch this evolve. Each convention offers more information.

Convention attendees take information back to local chapters throughout the country. Grassroots advocacy is largely responsible for the movement that has made hearing loss an issue of national concern. Thank you to the late Howard E. “Rocky” Stone, the charismatic founder of HLAA, originally known as Self Help for Hard of Hearing People (SHHH), for starting this movement. Without SHHH/HLAA, it is unlikely that communication access for the hard-of-hearing would have been defined within the Americans with Disabilities Act, written and passed in 1990. It is possible that NIDCD would not have been established. It is even more likely that technology like hearing loops, Infrared Systems and FM systems, which all provide effective communication access to people with partial deafness, would not have been developed, refined or even licensed for our use.

Through education, information sharing, advocacy and peer support, HLAA has made an incredible difference for a population that hadn’t even been clearly defined prior to the early 80s.

I am thankful for HLAA, its chapters and its conventions. Involvement in the organization has enriched my life. If you or someone you care about is frustrated by partial deafness, I encourage you to find or form an HLAA Chapter in your area. Attend a convention if possible. When people who share a problem come together to help resolve it; good things happen.

HLAA’s 2013 Convention in the City of Roses

  • Keynote speaker, Howard Weinstein, inspired attendees with his work to ensure that children in developing countries have access to affordable hearing aids.
  • Outgoing HLAA Executive Director, Brenda Battat, gave a heartfelt farewell address
  • Katherine Bouton, former New York Times editor and author of “Shouting Won’t Help,” hosted a book signing. You can hear her story here, on NPR
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The HearingLikeMe editorial team includes Jill von Bueren, Kirsten Brackett and Lisa Goldstein.
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The HearingLikeMe editorial team includes Jill von Bueren, Kirsten Brackett and Lisa Goldstein.