Hanging Out with the HoHs

There’s nothing like an intimate gathering of 150 people with hearing loss. A little bit on the noisy side, but that’s what exhilaration sounds like: people—whose sole, mutual goal is to communicate—connecting to and understanding what’s being said, regardless of who’s saying it.

I’ve almost completed 72 hours of recovery from the Canadian Hard of Hearing Association’s (CHHA) annual conference, held this year in my birthplace, Halifax, Nova Scotia. After two full days of board meetings, informal but passionate late-into-the-night discussions about hearing loss, two more days of workshops and plenary sessions, and a seemingly never-ending flow of nourishment, I’m ready to return to the real world.

This was my 20th anniversary of attending the conference. In 1995, I was five months pregnant and looking for support on how to be a good hard of hearing mom—or at least one who wouldn’t damage her child because of things not heard, simple things like cries for help. At that conference, I met my first hearing loss hero, Cindy Gordon, who was there with her six-month-old child.  Cindy calmed my fears, gave me ideas and became my friend.

Spending a few focused days with people who share your issue, which in my case is hearing loss, is like knocking on the door and being admitted to your own Emerald City. It’s a world of possibilities, discoveries and solutions to problems that plague us on the outside—in the real world where our communication needs aren’t always met.  It was a short week, jam-packed with emotions and epiphanies—especially for the many people attending for the first time. But even for regulars like me, getting together with other people with hearing loss is continuous affirmation that I’m doing things right as a person with hearing loss.  And it’s a safe atmosphere.

• Saying pardon loses any stigma it might have in the outside world. No matter how many times you say pardon, there is no irritation or eye rolling and an immediate response is usually guaranteed.  Although if you say it more than twice to the same comment, your communication partners may rephrase their comment, or shift seats, or do something to help you understand better.

• Empathy and laughter go together. As we sat down to dinner at the closing banquet, my friend Brian Marshall admitted that when he was showering before dinner, he had that heart-stopping moment when, washing his hair, he encountered his hearing aids.  I asked him if the sound of the water hadn’t seemed just the tiniest bit louder?  He made it halfway through dinner before bolting to retrieve his aids, which had been drying out in a dry aid.  (The guy had gone 30 years without hearing aids and now could hardly bear going 30 minutes without them.)  I felt badly for him – but it makes a good story.

• Almost all conversation focuses on hearing loss – personal histories, living with it, technology, etc. It’s the place where people will listen to your stories. They are honour-bound to do this, if they have any hope in hell of getting you to listen to theirs.

• Batteries are another hot topic of concern. “How long do yours last?”  This is a common question.  Anyone, usually a newcomer, who volunteers that they save battery life by NOT wearing their aids all the time, may draw incredulous stares and the polite suggestion that not wearing hearing aid batteries is as logical as not breathing so you won’t wear out your lungs.  You need to breathe—and you need to hear.

• Vanity is redefined. Hearing aids, streamers, and cochlear implants are not something to hide but to be glorified. Hearing aids are admired, fondled and coveted for their size, shape, colours and amazing capabilities. People look at each other’s heads curiously to see if the other guy has something we want. Hmmm a silver one…wow, how neatly it nestles behind her pinna….oh man, look at that beautiful navy-royal blue CI against the white of her short hair.  That last one is my friend who is going through chemo and her former thick dark hair, which had hidden her CI, is now a short crop of snow.  That CI on the side of her head, almost black on white, yin and yang, is a proud declaration of pure communication. She has never looked more beautiful.

• It’s said that meetings involving hearing loss people never start on time. The captioning is being adjusted, the text on top needs to be a different colour, the loop listeners need to be distributed, people are encouraged to turn on their telecoils to take advantage of the loop and someone doesn’t know how to do that and, oh, too bad, it turns out they don’t have telecoils in their aids. We accept that it may take us a little longer to get going, but once we are set up, we are so good to go; with voices filling our ears and when we read the captions, information flows naturally and freely and we don’t feel like we have any problem at all!

• I always learn stuff I didn’t know before and I meet people I didn’t know before. A knitter from Calgary. A big former pro football player who teaches speechreading classes. A man who, 10 years ago, would never have got on stage wearing a goofy hat, but getting a CI was a game changer. A renowned hearing loop expert and advocate who is still moved to tears—at 8 in the morning—thinking of other tears that flow when people hear through loops for the first time.
  

  Juliette Sterkens, Hearing Loop Expert

   

This is a fact: you will do better in your life with hearing loss if you, even once, make that connection with others. Do it. Contact the association of hearing loss people in your area or your country. Tell them I sent you.