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How I Found the SayWhatClub

By Robyn Carter

Screen Shot of a road sign with someone riding a bike while wearing a cochlear implant

I was implanted back in 1993.  I was the 8th adult in New Zealand to receive the implant. As there were not many others and no support group back then, I started looking online for some hearing loss/cochlear implant support groups to join.  I also was the editor of our NZ Cochlear Implant Newsletter so I was looking for articles to share to our recipients and would-be recipients here in New Zealand.

SayWhatClub History

I found Bob’s email first. Bob had written an article for the Adult Late Deafened Association about faking it, when you don’t really hear something, but are too embarrassed to admit it, or too tired so you nod your head, laugh and pretend you knew anyway. This article resonated with me as I was such a good faker. So when I found Bob’s email address, I flicked him an email to tell him how much I enjoyed his article.   The result of this was that he just subscribed me to the SWC.  That was in 1995. And I’m still here.

SaywhatClub lists

There was only one email list back then – SWCForum. It was a busy list full of controversial conversation, often heated, often hilarious, and from there I forged many friends – many whom are still my friends today. Some of them are long gone from SWC, but there’s a good many still on the listserv with me today.

The list enabled us to converse like we never had before. We could write our feelings, what was happening, we were lifted when we were down, and in turn shared our experiences so that others may grow. There were fights, indignation, jokes, laughter and sometimes even tears, but most of all there was acceptance.  It’s the feeling that we have finally found a niche where we could be what we were without fear of ridicule for being hard of hearing.

Cochlear implant technology

I was the only one with a cochlear implant back then, and I was careful not to emphasise it too much as many people were still very anti-implants.  Gradually, I watched people accept the technology and embrace it.  I’ve seen many who swore they never would get one, actually have one now.  I chuckle quietly, but secretly I’m thrilled the gift of hearing is somewhat restored, so they can enjoy life again. I feel overjoyed that this hasn’t meant that they left SWC. In fact most stayed, and the list is richer for the experiences  they share.

I’ve watched the list grow – from a single list – SWCForum, to six lists!  We also offer three Facebook pages, a blog, and we even have a twitter account somewhere!  Each list has different personalities, even though we all have hearing loss in common.

SayWhatClub Leadership opportunities

SayWhatClub is now an incorporated society run by volunteers. At the top we have the Board of Directors who meet monthly and take responsibility for the club’s growth, putting in place improvements and try and keep up with the ever changing technology over the years.

Our committees ensure the smooth daily running of the organisation.  They manage the website, welcom new members, and ensure the lists don’t stagnate.  Another committee is for organising our yearly conventions.

Saywhatclub conventions

We have a convention every year in a different part of America each time. These involve workshops, socialising, and loads of fun. You get to meet in person the people you’ve been talking to for years. I’ve been very lucky to attend three of these – one in Philadelphia, one in San Antonio, and one in Boise, Idaho. The friendships that I forged over the years, are now cemented in person.

SayWhatClub’s International presence

SWCers come from all over the world. We have USA and Canadian members, and also Australia, Netherlands, Finland, the UK, and India to name but a few.  We are a diverse group, from different backgrounds, different religions,  but our hearing loss binds us together.

SWC for me helped me grow as a person. It gave me opportunities that I never would have been given otherwise, and helped my confidence.  SWC taught me patience. It taught me about American Politics (although I’m not sure I’m richer for that!).  The SayWhatClub taught me about different cultures.  Most of all, it taught me that valuable friendships can made across oceans, across cultural divides, across political divides, and no matter what we say – we’re still friends.

It’s now 2017.  I’ve now been a member of the SWC for 22 years.  I’m still here. My implant is now 24 years old and I’m starting to feel old!

Check out the SWC Website, and if it’s what you’re looking for, click “Join”. You won’t be disappointed.

You can also join our Facebook Groups, we have two – one for people between 18 and 40, SWC Gen-Y. The other  for everyone, Say What Club, Friends With Hearing Loss.  We also have a public Facebook page, SayWhatClub, A Worldwide Forum for People with Hearing Loss where we share many hearing loss-related articles, videos, news items, and useable information.

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