A Hearing Loss & Late Deafened Blog

Posts Tagged ‘friendship’

How to Ride a Bike with Hearing Loss!

In Cochlear Implants, deaf, Deafness, Hearing Loss, Partially Deaf, SWC convention, Travel, Uncategorized on March 21, 2017 at 11:13 pm

By Robyn Carter

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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 group 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.

And so I found the SWC – in fact, I found Bob’s email first. Bob had written an article for the ALDA 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.

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.

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, and I’ve seen many who swore they never would get one, actually have one.  I chuckle quietly, but secretly I’m thrilled they have the gift of hearing somewhat restored so they can enjoy life again. And I’m overjoyed, that this hasn’t meant that they left SWC, in fact most stayed and the list is richer for their experiences that they share.

I’ve watched the list grow – from a single list – SWCForum, to Six lists, 3 Facebook pages, a blog, and we even have a twitter account somewhere!  Each list, although similar because we all share the trait of hard of hearing, is different because of the personalities on each list.

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.

We have a number of committees that ensure the smooth daily running of the organisation, from the website, to welcoming new members, and to ensuring the lists don’t stagnate, and for organising our yearly 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 had forged over the years, were now cemented in person.

SWCers come from all over the world. We have USA and Canadian members, but 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 has helped me grow as a person. It’s given me opportunities that I never have been given otherwise. It’s helped my confidence, it’s made me more patient, it’s taught me about American Politics (although I’m not sure I’m richer for that!), it’s taught me about different cultures, but most of all it has taught me that valuable friendships can be 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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SayWhatClub Convention, then and now

In Deafness, Hard of hearing culture, Hearing Loss, Life on January 3, 2012 at 3:31 pm

In the late 90’s I started an internet search late one night for a hard of hearing support group. I felt alone in my hearing loss and desperately wanted to know others like me, how they coped and if there were secrets for getting by in the world. The first few entries listed on the search showed ALDA (Association of Late-Deafened Adults) and SHHH (Self Help for the Hard of Hearing now Hearing Loss Association of America). Their websites featured chapters sprinkled around the country and while that was exactly what I wanted, I lived too far away from them in a remote part of California. The nearest chapters were at least 2 hours away and that just wasn’t practical or feasible.

Searching further I ran across the SayWhatClub website. It was an internet based community and I joined right away. I don’t need to tell you all how much I learned and the new friends I made because you probably already know. I learned everything I know about hearing loss here from others like myself. It was a godsend.

In July of 1998, the SWC held their second mini-convention, a group camp site in Rocky Mountain National Park. I lived in Blythe, California, and on the way to Colorado, I picked up SWC member Joannie, also from the Connect list, in Vegas. We packed my green Mercury Sable full of camp gear and food and hit the road. It was our first face to face meeting though we were friends on the list. Talking in the car wasn’t easy but we still had fun traveling together.

A day later, I met twenty something other SWC members from various lists and we had a great time. Everyone heard and made sure the others heard. From time to time I heard someone call out, “Hey! You’re faking it!” because there was getting away with it in this group. Throughout the whole weekend, no one felt left out of conversation to my knowledge, even at night around the campfire. Someone brought a guitar, we sang (off key I’m guessing), we shared stories and there was a lot of laughter. The experience of being with others like me touched my heart.

Here’s a few pictures I took of other members. I think I was so happy to be socializing that I didn’t take many pictures, darn it. I wish I had taken a group photo.

Me, almost fourteen years ago

Melanie, Deb and Ling

Karen and her family, Melanie

Paula, Raj, Bob and Christine

Bob, Walt, Raj, Brenda and Christine

Without the SWC, I don’t know where I would be today. I haven’t been to another convention since that first one and how I wanted to go the last couple of years but money and time prevented it. In 2012 it’s going to be held in Salt Lake City and I’m on the committee so I get to attend! Yea! I’m excited to meet more SWCer’s and I just know it will be another event I will remember forever.

Not only do I get to attend but I get to help plan it. We are still working on things but here’s a sneak preview of what’s to come.

We have John Waldo coming to speak. For those of you who don’t know him, he’s an attorney (hard of hearing himself) from Washington who advocates for equal access for the deaf and hard of hearing. He fought for captioning in theaters and some of us are now seeing those results. He’s done this and so much more. Visit his website for latest information on access and advocacy issues, Wash-CAP.

He came to Utah about a year ago to give our Popcorn Coalition, now Utah-CAN, a pep talk on getting equal access in public places and I had the pleasure of seeing him speak. One of the things he stated was how we hard of hearing folk seem to be the meekest of the handicap groups. We are hesitant to make our needs known, not wanting bother others with our requests but you don’t see that with people in wheelchairs… they aren’t afraid to ask for equal access and are much more vocal about it. That got me thinking and gave me courage to attend a couple of events that I would have otherwise shied away from, with success. It’s ok for me to ask for my rights and most of the time people are willing to work with me. If I’m not going to ask, who will? I’m excited to have John Waldo attending our convention and eager to hear him speak again. Come to the convention, listen to him speak and see what inspiration he offers you.

There’s going to be a fun workshop called Happiness 101 with Frank Clayton who is a licensed counselor in Utah. Come learn about what happiness is and is not, the myths of happiness and the happiness set point. Learn why you’re not happier, but most importantly come to learn what will make you lastingly happier based on scientific research. Visit his website, Happiness 101.

When I moved to Salt Lake City, I discovered the Sanderson Center for the Deaf and Hard of Hearing. This place has been a haven to me and it too has a special place in my heart. I went to the Sanderson Center the first time to attend a local HLAA meeting and to my amazement, CART was provided. It my first time experiencing it although I heard of it long before. We hold our Walk4Hearing meetings here and CART is provided. Seminars are offered, with CART (or interpreters) and workshops as well. They provide classes for the hard of hearing as well. There is a level of acceptance here which I only experienced 14 years ago in the Rockies at that first SWC convention.

Donna Penman and Jazzy came last August to visit Salt Lake, to see if it fit the needs for the convention and scout hotel sites. I took them to the Sanderson Center and Donna was amazed at the set up we have here. I believe it’s considered to be one of the best hoh/deaf centers in the country and I feel incredibly lucky to have landed here in Salt Lake City for that reason. The Sanderson Center is eager to help us with the convention and will provide tours of the premises, even sending vans to pick us up. Check it out when you come.

That’s all the news I have for you now but I will update you all as details are settled. Be sure to mark your calendar and join the SWC convention, August 15 – 18, 2012. See you there!