As a person with hearing loss, my life changed immeasurably for the better when I connected with other people dealing with the same issues. Through the Canadian Hard of Hearing Association and the Hearing Loss Association of America, I learned how to communicate better and to live more successfully and happily. Recently, I gave a presentation to the vibrant group of people that make up the Jacksonville Chapter of the Hearing Loss Association of America. I asked Judy Martin, the group’s dynamic founder and past president, if she would share her experience in starting a local support group for people with hearing loss.
Who knew there were support groups for people with hearing loss? I sure didn’t.
I knew about AA, PWP, WW, groups for cancer, gambling and grief, among others, but something call SHHH/HLAA? It just wasn’t on my radar. Where was I—in the mountains, under a blanket, out of the country? No—in spite of a severe hearing loss, I was front and center in my community. I didn’t know many folks with hearing loss except for a few older people, and I was making my own way in life with my trusty hearing aids, the practice of watching mouths, and getting into people’s faces, literally. (That’s the best way to read lips.)
I polished my organizational skills when I joined the Lions, the Grange, the Ambulance Corps, and led a group of 20+ 4-H girls. I also produced two musical comedy dinner theaters, worked in a soup kitchen and edited a monthly community newspaper. Then Tom, my Hearing Husband, and I retired from our jobs to move to Florida in October 2004 after a lifetime of living in the lower Hudson Valley, NY.
It was on a short serendipitous trip back north in April 2005 when my brother-in-law asked me for information because he was losing his hearing. Googling brought me to SHHH (Self Help for Hard of Hearing), now called HLAA (Hearing Loss Association of America). A support group for people with a hearing loss? Hooray! But who knew?
Immediately upon returning home, I checked to see if there was a chapter in the Jacksonville area. There was none. This wasn’t good enough for me, and over the next few months I attended meetings: at another HLAA chapter meeting, a state meeting, and a meeting where plans were being made for the 2006 HLAA National Convention in Orlando. I read up on the organization, joined message boards and list servs, and talked to other members.
That October, I felt I had enough knowledge to begin this project but not so much as to frighten me off. Too much knowledge can be a dangerous thing.
I have learned through my volunteer experiences that the most important thing is to get a group together and the rest will fall into place. Finding a place to meet was near the top of the list. Libraries are always good since they do not usually charge if you are member. Other possible venues include religious facilities, hospitals or professional hearing centers. Initially we met at a library. I contacted the HLAA national office in Bethesda to obtain the names of local members because I needed four people to officially begin the chapter.
It’s important to know your population in order to choose the best day and time for the meeting. In South Florida, on average, 25% or more are seniors. In our large urban area, it’s about 12%. Choose a meeting time that includes younger people, middle-agers and seniors. I decided on a weeknight from 6:30 – 8:30. It gave working people a chance to attend, and for most of the year it’s still light enough for those who don’t like to drive after dark.
Then it was on to the local daily and weekly newspapers. Posters and flyers dropped off at hearing loss businesses are helpful, as are radio and TV stations if they broadcast community news. You only need to remember that you and your chapter members should take it one day at a time. Not all chapters have the same personality, so “if at first you don’t succeed . . .”
We had our organizational meeting in February 2006 at the Westside Regional Library, which was almost brand new. Seventeen people arrived and as we talked I was quick to declare that I’d only been a national member since June 2005, so we were all going to have to learn together as time went on. By a stroke of good luck, our first meeting (and all others to this day) was captioned pro bono by a CART provider who had been assigned to me when I appeared to speak to the Legislative Delegation at City Hall. This angel volunteered!
Since the beginning, we have continued to reach out to the hearing loss community. We have held more than 70 meetings, with 60 speakers who shared information on numerous subjects related to hearing and hearing loss. We have held round table discussions, gone to the movies, and dined and partied together. The chapter is planning our third Walk4Hearing, as well as participating in health fairs and arts markets, and attending national conventions.
We will continue to advocate, educate and support, because every year, more and more people -– young and old – are losing some hearing. Fortunately, as technology advances, more ways are being introduced that help us communicate with each other. I never dreamed in the olden days of my struggles, that a device called the cochlear implant would change my life and that of others.
I know it to be true that other chapters have had either similar experiences or totally different ones than we have. And aren’t the differences fascinating? We can all learn from each other, and we do.
In our Jacksonville chapter, we have had profound moments, and those that are funny, sad, and exciting. I’m grateful to Gael Hannan for asking about the birth and everyday life of an HLAA chapter. I hope that if you have hearing loss, you will reach out to HLAA—or even start your own chapter!
A small group of us have started a similar Chapter in Asheville, North Carolina, this year. We’ve had two meetings, with an attendance above expectation. We had hoped to have a kick-off meeting in February with Juliette Sterkens coming in to talk about looping, but were thwarted by our mountain weather, by freezing rain. But the work we did paid dividends when we met for the first time.
Broadly speaking, our path in the past year followed the one described here. We didn’t find it easy to secure a venue. Libraries, churches and others that are sometimes free do charge here. But we are meeting now at Care Partners, a community health organization with a lot of aspects to it that is associated with our very good Mission Hospital. We are struggling currently with the sound equipment, which is not up to dealing with our needs, but with a lot of help we are making it work. We’ve had a temporary loop so far, and CART services from three different qualified individuals. Sadly, NC State used to fund CART, but does not do so currently. With some pro bono work and some funding from the North Carolina Association of the HLAA, we are coping.
It was nice to see this description of starting a Chapter. Perhaps others will find the courage (and it does take courage because you don’t know ahead of time what the obstacles are going to be) to do the same. We do need more Chapters across the country, more voices to act locally and to boost what the HLAA can do on our behalf nationally.
So thank you for this.