A Hearing Loss & Late Deafened Blog

Archive for the ‘Cochlear Implants’ Category

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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The Holidays: Including those you love with hearing loss

In Cochlear Implants, Deafness, Hearing aids, Hearing Loss, Lip Reading, Speech Reading on November 22, 2016 at 10:51 am

by Michele Linder


When the answer is “No.”, the holidays and all their festive gatherings can become filled with anxiety and dread.

Large gatherings are especially difficult for those of us who live with hearing loss and deafness, and contrary to what most believe, wearing hearing aids or cochlear implants doesn’t help much in groups and noisy environments . . . it’s a continual challenge.

And, if you’re purely visual in your communication — a lipreader , like me, with almost no hearing ability — it’s virtually impossible to follow conversation in a group. Your brain simply can’t keep up with the speed and the shift from person to person, and back. You become lost unless someone takes the time to help you stay on top of things. I know people with hearing loss who dread the holidays to the point where they no longer participate and have earned a reputation of being anti-social, but the opposite is usually true. They crave communicating at will, but haven’t figured out a way to do it without the help they need, and many don’t even know what to ask for, let alone how to ask for it.

I wish there was a “Group Conversation With Hearing Loss, 101” class that we could all attend with our family. First, to instruct the person with hearing loss on what to ask for. And second, to clue our family in on how they can be more mindful to include us without our constantly asking. The group/family gathering setting is by far one of the biggest ongoing challenges we face as people with hearing loss. Left on our own, we either muddle through, fake it or give up and slink off to amuse or busy ourselves . . . anything that will help ward off that feeling of being left out. It’s tough.

I’ve talked to my family about my needs in a group and they’ve said things like “Just speak up when you’re not getting what’s said.”, which tells me they have very little understanding of what hearing loss is really like. If I spoke up at every word I didn’t hear there would be no flow of conversation at all. It’s not even a matter of speaking up to say we aren’t getting what’s said — we never get it all — it’s a matter of the other people in the group being aware and generous enough to include us by adjusting their norms to accommodate those of us with different norms. In a group, people with hearing loss are totally beholden to how important it is to others to change it up for accommodation.

Look around this holiday season. That family member who’s always cleaning up, doing dishes, putting things away and busying themselves might be feeling left out. Step in to help without their asking.

Here are a few fundamental things we all know, but need reminded of. 


Give a person with hearing loss first dibs on seating:  The best vantage point for lipreading can make all the difference. It allows the person with hearing loss to avoid backlighting and to position themselves at a distance close enough to read the speaker, though in a group the person speaking shifts, so sometimes there isn’t a sweet spot for lipreading in a group — one of the reasons we need help from others.


Speak one-at-a-time:  Sometimes this is hard to do, given the lively and often jolly exchanges at family gatherings — jokes, laughter, moving about and acting out the stories that are being shared. 


State what the new subject is when the subject changes:  Our brains can’t keep up with the pace of most group conversations, and by the time we finally get what the new subjects is, it’s changed to something else. We definitely need some help here.


Eliminate as much background noise as possible:  That includes holiday music. This one often feels like a killjoy to the person with hearing loss if they have to be the one to point it out time after time.


Eliminate obstructions for those who need to see you speak:  Everyone, even hearing people, lipread to varying degrees. Bad habits can sometimes hinder understanding for all — covering your mouth with your hand or gestures, talking with food in your mouth or while chewing, turning your head while talking.

And, pay attention to tabletop decorations that can obstruct the view.


Providing good lighting:  Lighting is no small thing. Poor lighting wrecks lipreading skills, so think before you light those candles or turn down the lights to enjoy the sparkle and shine of the Christmas Tree.

Here are a few of the things that I appreciate from my hearing family and friends who make an attempt to be generous in conversation.

  • When someone knows a subject is relevant and of interest to me and they notice I’m staying silent because I’m probably not following the conversation, they make a point to include me by stating what the subject is and asking for my thoughts on the issue or topic.
  • An especially considerate family member that positions themselves next to me and will keep me clued in as much as they can. I really appreciate this and wish every person in my family took a turn at this instead of just a few. Interpreting for someone with a hearing loss can be tiring too, so I’m thankful for the help and don’t become offended when the person moves on and takes a break. I always hope someone else will take over.
  • That wonderful human who speaks up on my behalf when someone turns on the music, lowers the lights or suggests an activity that I won’t be able to participate in.

Sometimes it’s enough to be among those you love and you can appreciate how everyone is enjoying themselves.  However, for me, sitting and watching everyone else talk, laugh and be merry, unable to follow the conversation because no one is taking the time to include me, has an expiration that depends on my mood. I can only sit for so long before I become uncomfortable and start to feel like an outsider. There comes a point when I have to do something else, and that’s okay. The minute it’s no longer fun, get up and remove yourself and don’t worry what others think. Your family should know this about you, and if they don’t, tell them. Explain that lipreading and the concentration it takes to follow group conversation is exhausting, but also explain what being left out feels like. Most will appreciate that you took the time to share.

Most, not all. I’ve actually heard people say, “You can always opt out of situations where you know you can’t hear, life doesn’t always revolve around you.”

We know this and are already opting out of many situations unbeknownst to those around us, but should we have to opt out of family gatherings? We know not every person in our family is going to accommodate us every time we need help, but that doesn’t mean we don’t wish we were included more often by more than the few who regularly step in to help. 

I’m the first to admit that I’m not as good as I need to be about signaling when I’m not getting what’s said, so I’ll work on me, but I can only do so much on my own. It’s often up to our family and friends to adjust right along with us as we lose more and more hearing and struggle to remain part of the group.

Who and what helps you hear in a group when the holidays roll around?