A Hearing Loss & Late Deafened Blog

Archive for the ‘deaf’ 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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Navigating A World That Assumes You Hear

In deaf, Deafness, Hearing Loss, Lip Reading, Speech Reading, Uncategorized on March 8, 2017 at 6:10 pm

By Michele Linder

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At whatever stage in life you came to hearing loss, it’s likely no one gave you any specific information on how to deal with not being able to hear in a world that assumes that you do. No one instructed you on what to expect, how to react, or what to do to make communication easier. There’s no required Hearing Loss 101 class or orientation for newbies that teaches you how to navigate through difficult hearing situations.

          There should be.

I recently posted a great article to our SayWhatClub Facebook Page that I read on The Mighty, a website that publishes “real stories by real people facing real challenges”. In the article, To the Girl Who Saw Me Struggle to Communicatethe author describes a process she’s gone through “hundreds of times” throughout her college career—standing in line at the bistro in the busy student café rehearsing her order before it’s her turn at the counter. 

          I’ll admit to wondering… if this situation is something she’s dealt with “hundreds of times”, why isn’t she better at it?

I’m going to break this simple scenario down for you the way I do for myself when I’m met with a situation that is difficult and uncomfortable to hear in, because I spent several decades letting these very simple situations turn unpleasant, frustrating and awkward.

          Yes, I still assess situations that are new to me, rehearse, and use my super powers (lipreading, anticipatory and observation skills, etc.) to do all I can to make things go more smoothly, but no longer am I on pins and needles waiting for what can, and most likely will, go wrong, because—and this is really important…

I tell people that I can’t hear. Don’t be afraid, just do it. And, however you say it is fine… for me, I say “Hi there… first, let me mention that I’m a lipreader and I need to see you speak, so please don’t look down while talking or I won’t be able to read your lips.  Lipreading is great, but it doesn’t always work, so I may need you to write down what I can’t hear.”, as I hold up my trusty pad and pen. That may seem like a mouthful, but it’s pretty much a given that anyone behind a counter—wait staff, check-out or bank clerk, etc.—is going to talk to you while looking down, so clue them in at the start of things and they’ll know better.

And, speak up when you foresee a problem. If, when you place your order, the counter person asks for your name, let them know you’re not going to hear them call you when your order is ready. Ask for a plan B.  If they make a workable suggestion, great! If not, offer a solution of your own—“I’ll stand over there and watch for you to wave at me when my order is ready, but if I miss it someone needs to come over and get me.”

          If something does go wrong and you miss a cue, and the aggravated guy behind you taps you on your shoulder and rolls his eyes…

Keep your cool. Because the minute you freak out, all the skill in the world won’t be of any use… you’re now so flustered that any ability you had to figure out what’s being said goes out the window.

And, do let rude people knowin as nice a way possiblethat rudeness is not helpful. It’s not something they would want from others, so thank them for getting your attention, tell them you’re deaf and sometimes miss things, but also tell them the aggravation and eye-rolling isn’t necessary or appreciated.

          If you need justification for calling them out…

Consider it a teaching moment. Express your hope that when they next encounter someone that seems to be not paying attention, consider that they might also be deaf.

          If you do lose your cool, for whatever reason—someone has made you feel “less than” or you’re embarrassed at not hearing and panic—consider this…

It’s not your fault that you can’t hear. Stop buying into the misconception that you’re inconveniencing the world because you have different communication needs.  

          Stop pressing your lips tightly together and glancing at the scuffs on the toes of your black Converse low-top sneakers. No amount of fiddling with your hearing aids or wishing will produce an answer to the mysterious unknown question you didn’t hear. It will never magically appear out of nowhere in written form.  But you can…

Have them write it down, thereby creating your own magic! Hand over your paper and pen, and say “You’re going to have to write that down, I’m not getting it… thanks.” Don’t pose it as a question, simply offer instruction for what you need.

It’s empowering when you realize you don’t have to leave difficult hearing situations to chance. When you actively participate in finding ways to make things play out as smoothly as possible, you’ll likely not need a gentle and helpful soul to swoop in and clue you in… you’ll be able to handle the situation yourself before it turns unpleasant.

However, as the author states, she was having an incredibly stressful week and was feeling extremely insecure, isolated, and alone with regard to her hearing loss, and we all know how that feels. It’s normal to have bad days when we feel vulnerable and don’t handle situations as well as we could. So, there’s no need to beat yourself up about it. 

          It’s certainly not my intent to beat the author up in any way, either. I’m really glad she wrote in such detail about her experience and gave the world a window into what life is like with hearing loss. We’ve all had encounters where we’re not in the frame of mind to be our own best advocate… sometimes we’re just tired of explaining. Her article made me think about my own bad days, how far I’ve come in my fifty-seven years, and how what I’ve learned along the way has made me stronger and a better person.

And, hopefully, on those bad days you’ll be as lucky as the author was at crossing paths with a particularly tuned-in person who took it upon themselves to step in and help, and who didn’t make a big deal about it.

Sometimes we, and others, can make hearing loss out to be a bigger deal than it needs to be.

          Yes, it is a big deal that one whole sense is not working the way it was designed to work and it affects almost everything you do, especially how you communicate. However…

Take charge! Actively work on ways to eliminate what makes a situation unpleasant. Think of it as instruction that increases your self-sufficiency, which in turn makes you feel more capable. And, capable is what gets you out in the world to enjoy your life more.

Live more, isolate yourself less.

          Most people with a disability want to remain independent and self-sufficient and to feel capable.  Don’t you?