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Why I Finally Became a Joiner

For people with a disability, coming together can be empowering.

At least partly because of my hearing loss -- and largely because of my stubborn personality -- I've never been a joiner. No clubs, no social groups, nothing that meant sharing experiences with others. But now -- totally because of my hearing loss -- I've found a group where I feel totally at home.

The last week of June 2013, the Hearing Loss Association of America met in Portland Oregon. The weather was spectacular – bright blue sky, warm sun – the benefit of the heat wave devastating states further south.

Hundreds of people attend the convention every year, many with family and friends. This was my third convention and by now I have come to know many HLAA members around the country. That made it more of a social event than my previous two conventions and I had a great time. I also signed books – which were sold out within half an hour of the hour-and-a-half time slot allotted for the book signing.

But my first two years were also exceptional, and I’m writing this mostly for people who have never attended the HLAA convention, and -- like me three years ago – may never have heard of the organization.

I wrote in my book “Shouting Won’t Help” (the link is to Amazon but it's available everywhere, in hardcover and as an ebook) about my first convention. It was only when I decided to join the Hearing Loss Association of America that I realized how many people out there were just like me—not only hearing impaired but having a great deal of trouble adjusting to it. I’d hesitated joining. I’m not a joiner. I was reluctant to go to the convention, held that year in Washington DC, assuming that everyone would know everyone else, that they would be there with family and friends, and that it was centered around bonding and social activity.

There was a welcome dinner, which I skipped (a mistake), an outing to a local attraction (that year it was a production at the Kennedy Center), a farewell dinner. I didn’t do those things. But I went to the research symposium, and I went to as many of the individual workshops as I could fit into my schedule. I heard a lot of very smart people talking about all aspects of hearing loss, and a lot of smart people in the audience asking questions and making comments.

It was easy to fall into conversation with others, especially those who like me had come alone, and I went to lunch or dinner or coffee with new acquaintances.

But mostly I came home with a head full of ideas about hearing loss. About how many of us there are, how vibrant and active the community is, the promise of new developments in treatment and even the possibility of a cure.

I heard lots of discussion (mostly griping) about hearing aids and their cost and how poorly they work for many people. I also heard about how to make the most of your hearing aids, ranging from how to position yourself in relation to others to all manner of hearing-assitive technologies. I heard about others like me having trouble adjusting to a cochlear implant.

I went to several sessions on the psychological issues that come with newly diagnosed hearing loss. I learned how important it is to speak up about your hearing loss. And how welcoming people are when you do. Where before they thought you were aloof or maybe stupid, now they know that you're simply a person who has hearing loss -- not aloof, not stupid, just having trouble hearing them.

Next year’s convention is in Austin, Texas – great food, great music. Interesting workshops and provocative discussions, activities and ideas to reflect on over the following year. Most of all, there are people who have learned not to let hearing loss rule their lives.

Last week of June 2014. Mark your calendar.

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