Is the SayWhatClub for You? by Michele Linder

Is the SayWhatClub for You? If you or someone you love has a hearing loss and is saying “What?” much of the time, then the answer is “Yes!”  

Join SayWhatClub

The SayWhatClub is an all-inclusive online hearing loss forum.  It doesn’t matter what type of hearing loss you have, how or when you arrived at life with less hearing, or how you choose to live with hearing loss.  Most of our subscribers wear hearing aids.  Some have cochlear implants.  Many know and use various forms of sign language (even Crappy Sign!) Some use assistive listening devices (ADL’s) and other technology.  There are also those, like me, who rely mainly on lip/speech reading and visual skills.  More often than not, you’ll find people who use a mixed bag of tricks to hear and understand in the noisy world in which we live.  This makes SWC a great place to share what works for you, and to glean the benefits of what works for others. Many of our subscribers are also members of ALDA, CODA and HLAA.

A little history about us

In 1992, the SayWhatClub seed was planted during a chance meeting in an online bulletin board for the deaf and hard-of-hearing.  Registering relief at finding others like themselves, and recognizing the benefit of sharing their experiences of hearing loss, founding members formed a small email group that grew, over time, into what is now the SayWhatClub.

Incorporated in the mid 1990’s, the SayWhatClub currently plays host to several email lists.  Our subscribers come from many corners of the world–India, New Zealand, Australia, South Africa, Israel, Canada, United States, and others.  We have come together for the purpose of sharing and learning from each other’s unique hearing loss experiences, knowledge, and insight.  We have subscribers who have been with the club from the very beginning (almost twenty years now), others whose participation began just recently, and everything in-between.  Our strength lies, partly, in our flexibility to change with the times and needs of those who join our ranks.  Our diversity in dealing with hearing loss. 

Peer support

 When I first joined the SayWhatClub, I was in awe of the hearing loss knowledge and experience I found there.  I wondered a bit at what I had to contribute, as I knew little about living life with hearing loss beyond my own limited success with technology.  The visual skills I acquired naturally, throughout a childhood of gradual loss, seemed a bit pale against the tech savvy and knowledgable experiences that some of the other subscribers had.  I saw my own experience as less valid.

However, I soon learned there was no wrong or right way to arrive at or deal with hearing loss.  Any insecurity I was feeling was self-imposed.  As the days and weeks passed, I found my hearing loss voice and regained much of the confidence I had lost due to a drastic hearing dip that threw a wrench in the workings of how I personally dealt with not being able to hear.  I came to realize I had just as much to contribute, from my own unique perspective, as those whose experience at first glance seemed more valid.

Diversity

Hopefully, in sharing my own personal SayWhatClub journey, I’ve given you an idea of how diverse and flexible our club is. I’d also like to make you aware of what unites us.  Every single subscriber came to SWC seeking support and information for their hearing loss.  Therefore, much of the discussion on our email lists is hearing loss related (though some general lists are more geared toward hearing loss discussion than others). That doesn’t mean we are limited to conversation only about hearing loss issues. 

We are much more than our hearing loss, and for that reason SWC places no limits (within reason) on what topics can be discussed.  There are three exceptions.  Our focused lists, the Cochlear Implant List (for people interested in or already having had a cochlear implant) the Menieres List (for people dealing with combined hearing and balance issues), and the Advocacy List (for people interested in advocating for hearing loss access.  All are great places to learn and share about CI and Meniere’s Disease, or Advocacy.  We recognize that online discussions are often the only type of group discussion that those with hearing loss are able to participate in.  Many subscribers find an ease of conversation that isn’t available to them in “real” life.  

No matter how much we’ve grown, the SayWhatClub is still recognizable as the place that it started out to be.  It’s a place where those with hearing loss come together.  Our hearing loss that causes us to seek out others like us, but it’s the support, friendships, and continued benefit of sharing that causes us to stay connected.  So, if you find yourself saying, “What?”, then SWC might just be the place where you will find support, understanding, advice, and/or answers to your questions, as well as the place for sharing your own hearing loss experience.  We all have a story to tell, each as valid as the next, and we all can benefit from understanding and support.