A Weekend With “My People”

I’ve just spent six days in Washington DC with “my people” – the deaf and hard of hearing members of the Hearing Loss Association of America.uRLuPBWAxgnEBJT1a7h-oJduHnuj0stQ5l9xKf_TH6Ytf3O9TDtmEZ7X_EklCI6TDvDn=s170

It was our annual convention, held this year in Washington DC at the Washington Hilton, a short walk from the Dupont Circle Metro stop. Lots of restaurants and shops nearby for meals out, and the hotel had a big terrace and a gorgeous outdoor pool.

But I didn’t go out much because what was happening indoors was so interesting. First was a day of meetings with our HLAA board of trustees and our new executive director, Barbara Kelley, who has many excellent ideas for retaining and expanding HLAA’s place as “the nation’s voice for people with hearing loss.”  Then the convention got into full swing.

This year the event kicked off with a discussion of the long-awaited report from the National Academies of Sciences, Engineering and Medicine, which earlier this month issued its recommendations This was followed by a report from the President’s Council and Science and Technology. I’ve written about both on this blog: Good News for People With Hearing Loss. and New Report Pushes for Cheaper, Easier Hearing Aids. These reports are potential game changers for the hearing loss industry (including retailers and audiologists) and an encouraging step for consumers like me. Many of HLAA’s recommendations are reflected in the statements, and the organization strongly endorsed the findings.

Dan Blazer, chair of the NAS Committee, spoke about the committee’s deliberations, enlightening the audience about some of the thinking behind their decisions. Susan Graham, a member of the President’s Council, did the same for her committee. The two committees came to very similar recommendations but worked in parallel. PCAST, which was published first, had no idea what NAS would recommend. NAS did its best to ignore the PCAST report and make its own unbiased decisions.

The Friday morning Science Research Symposium is always a highlight of the convention. This year Dr. Frank Lin of Johns Hopkins Medical Center assembled a panel that included a number of prominent researchers. Hinrich Staecker of the University of Kansas Medical Center  spoke about the challenge of developing drugs to reverse sensorineural hearing loss. His discussion of the intricacies of this kind of drug development – including the challenge of finding a way to deliver the drug to the cochlea – was fascinating. Wade Chien, also of Hopkins spoke about research in stem cell therapy for restoring hearing.

They were followed by two audiologists who offered some innovative – and in some ways radical – ways of connecting audiologists with patients in underserved areas, where because of poverty and other health problems the incidence of hearing loss is especially high. Catherine Palmer of the University of Pittsburgh School of Medicine and Nicole Marrone at the University of Arizona  Department of Speech, Language and Hearing Sciences, offered similar solutions: if you can’t get the patient to the audiologist, take the audiologist to the patient.

The exhibition hall includes booth after booth of exhibitors offering devices and gadgets and services for people with hearing loss. If you’re a tech geek, you can get into some deep technical stuff here. If you’re like me, you may just want to learn about hearing rehabilitation or captioned telephones.

But perhaps the highlight of the convention is the gathering together of so many people with hearing loss from all over the country, and in this case all over the world, since the convention was held in tandem with that of the International Federation of Hard of Hearing.

Everyone wears name tags with their home towns, and it’s easy to strike up conversations. This is something many of us find difficult in the hearing world, because we always worry that we may not be able to hear the response. No one here minds repeating themselves four times until you finally get it. It’s especially fun for me because many of the attendees have read my books on hearing loss and are eager to talk – a writer’s dream!

If you have hearing loss and you feel alone and maybe confused, with no one around who understands what you’re experiencing, join HLAA. Come to our convention next year. Sit next to me at breakfast or in a panel discussion and introduce yourself. This convention is a wonderfully supportive environment where for once, we – the hard of hearing, the late-deafened adults, the hearing impaired (a term frowned upon), the people with hearing loss – whatever you want to call us, are in the majority. It’s fun.

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If you were at the convention and want to add your own impressions, please scroll down (way down) and comment.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

 

9 thoughts on “A Weekend With “My People”

  1. Did we cover the NAS report? I have a horrid fear the answer is no. Anyway — great post, as usual. cd

    On Sun, Jun 26, 2016 at 2:21 PM, Katherine Bouton wrote:

    > Katherine Bouton posted: “I’ve just spent six days in Washington DC with > “my people” – the deaf and hard of hearing members of the Hearing Loss > Association of America. It was our annual convention, held this year in > Washington DC at the Washington Hilton, a short walk from the Du” >

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    • By “we” Cornelia Dean means The New York Times, our former employer. And the answer is no, “we” didn’t — even though I tried to interest both the health editor and the op-ed editor in the report, which — I will repeat — is just the beginning of a new era that will make hearing health care affordable, accessible and available to all.

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  2. One more great thing about our HLAA conventions: For 4-5 days of meetings, in rooms very large and average size, nobody with hearing loss need struggle to understand what is said!

    The organizers provide CART (real-time display of text on a large screen) and install hearing loops (for dignified access to a top-quality sound signal at the flip of a switch on our -t-coil equipped hearing devices) in all the meeting rooms. There’s also ASL interpreters for our friends who are deaf.

    This is a glimpse oc what a wonderful world sensitive to the communication limitations of the desf and hard-of-hearing could be – if only the decision-makers in and out of government would treat hearing loss as the widespread and costly disability that it is.

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  3. The hearing loop at the HLAA convention using a “phased array” was the easiest, most
    comfortable I have ever used. Now, we are going to work on the dancing venue in
    Boulder to install a loop so we can all hear the calls.

    The convention is like a giant energy drink. Thank you, HLAA, for a great program for us.

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  4. Hi Katherine, this was my first time in the convention , I lived in Miami Florida have hearing loss and noone never told me about it, then searching in itunes last month I read your book and love it , after I research your information about the convention and decided to go, I was there because of you and for me was a life changing event ! thank you , I am 45 years old and I have being struggling with hearing loss for so many years and these 5 days for the first time I didnt feel alone! I would have love to meet you , I just bought your other book to read it on the plane! I will always be gratefull about this. Thank you, Katherine , I wont miss this events ever again ! Roxana

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    • Dear Roxana, I would have been so pleased to meet you. Thank you so much for your nice words about my books. And I’m so glad you enjoyed the convention. My first convention was really special — I still haven’t forgotten what it was like to meet so many people with hearing loss, and to have CART and looping at every meeting. There are quite a few HLAA chapters in Florida, including one in Miami. Here’s a link to the list and how to contact them:
      HLAA:Find A Chapter, Florida:
      http://www.hearingloss.org/support_resources/find-local-hlaa-chapter#florida

      Liked by 1 person

      • Thank you so much Katherine, I got in contact with the Miami Chapter and will see them in the next meeting, hope to meet you next year in the convention …. Meanwhile I will keep reading your second book and blog 🙂 … Roxana

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