A Hearing Loss & Late Deafened Blog

Is the SayWhatClub for You? by Michele Linder

In ASL, Assistive Listening Devices, Cochlear Implants, Deafness, Hearing aids, Hearing Loss, late deafened, Lip Reading on May 9, 2011 at 2:11 pm

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!”  

 

The SayWhatClub is an all-inclusive online hearing loss forum where 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.  Some of our subscribers wear hearing aids, some have cochlear implants, some know and use various forms of sign language (even Crappy Sign), and some use assistive listening devices (ADL’s) and other technology.  There are even 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, making SWC a great place to share what works for you and to glean benefit from what works for others. Many of our subscribers are also members of ALDA, CODA and HLAA.
 

A little history of our humble beginnings… 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 with 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, with subscribers from many corners of the world–India, New Zealand, Australia, South Africa, Israel, Canada, United States, and others–who have come together for the purpose of sharing and learning from each other’s unique hearing loss experience, 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, and our diversity in dealing with hearing loss. 

 

When I first joined the SayWhatClub, I was in awe of the hearing loss knowledge and experience I found there, and I wondered a bit at what I had to contribute, as I knew little about living life with hearing loss beyond my own limited knowledge and 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 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, and that 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.  

 

Hopefully, in sharing my own personal SayWhatClub journey, I’ve given you an idea of how diverse and flexible our club is, but 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), but 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, with the exception of two very focused lists, the Cochlear Implant List (for people interested in or already having had a cochlear implant) and the Menieres List (for people dealing with combined hearing and balance issues), both great places to learn and share about CI and Meniere’s Disease.  We recognize that online discussions are often the only type of group discussion that those with hearing loss are able to participate in, and as a subscriber of SWC, many find an ease of conversation that isn’t available to them in “real” life.  

 

I hope you’ll give us a look on our website, www.saywhatclub.com, and make sure you visit our weblog, at www.ahearingloss.com, and leave your comments while there.  SWC is also on facebook!

 

No matter how much we’ve grown, the SayWhatClub is still recognizable as the place that it started out to be, a place where those with hearing loss come together.  It is 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.

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  1. I agree totally. I joined the SayWhatClub back in 1999, and it has been a place to learn more about hearing loss and how to cope, to find friendship and support for other life challenges, and a place where we can discuss other issues and “hear” each other perfectly. Not only that, it puts together conventions or get-togethers where we can meet each other face-to-face and where everyone understands that we might have to say “What?” quite a bit, but ways are found to communicate in person, too. As my hearing loss has progressed, my love of the SayWhatClub has increased. I cannot find enough words to say how wonderful it is.

    • I just love SayWhatClub, Jan… I’m in Baltimore now for the SWC Convention, “Hearing on the Harbor”, and am really looking forward to meeting those I’ve only emailed with previously. I have had the good fortune to meet a few SWC members in my travels and am looking forward to seeing them again, but for most it will be a first meeting with many members–putting a face to the personality I’ve come to know online. SWC is a great group and I’ve learned so much in the 3 years I’ve been a member. If anyone (SWC member, or not) is in the Baltimore area we’d love you have you come out to meet us and to see what we are all about. Check out our website @ http://www.saywhatclub.com/events/baltimore-con/

  2. All around incredibly written blog post

  3. Thank god some bloggers can write. Thanks for this piece

  4. I am in accordance completely

  5. Incredibly well executed read!!

  6. Very good article explaining history of SWC, Michele. You are definitely a good writer. Thanks!

  7. You couldnt be more on the level…

  8. Extraordinarily well written blog!

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