A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Hearing Loss’

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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My Experience with CART

In Accommodations for Deaf, ADA, Assistive Listening Devices, CART, Deafness, Hearing aids, Hearing Loss, Partially Deaf, Technology on June 2, 2016 at 1:34 pm

Our guest blogger is SWCer Cristal Alferez. Cristal is a Mechatronics Engineer who works for a Manufacturing Company in San Diego CA. She is Mexican, speaks Spanish fluently and currently is mastering English pronunciation. Cristal loves to read, it is one of her many passions she likes many genres but what she enjoys the most are romantic novels, she also likes traveling by train in the Pacific coast and eating tacos. You can contact Cristal at calferez0911@gmail.com

My Experience with CART, By Cristal Alferez

I always thought I was pretty normal, until I started elementary school. Although I don’t remember very well, my sister told me that at some point in the fifth grade I refused to go school because I couldn’t hear the teacher, since I sat in the back part of the classroom. I’m not too sure why, but I never gave that event much importance. Maybe I didn’t think about it much since during middle school and high school the teachers sat us in alphabetical order and my last name starts with an A, I always sat in the very front.

It wasn’t until college that I really began feeling secluded, my classmates would often tell me that I was unable to hear my name during roll call or when someone called me behind my back, but they would all remind me with a grin on their faces. Although it kinda bothered me that they would be “making fun of me” I would just ignore it and carry on with my day. It was here that I realized that I was becoming more antisocial, compared to when I was in high school. Because of my hearing loss I couldn’t understand some soft spoken people and I couldn’t follow a conversation of more than two people. I would sometimes forget to turn in the homework, not because I didn’t remember but instead because it was assigned verbally and not written on the board.

Sometimes, if I couldn’t hear what the teachers were says I would start to daydream, I would start daydreaming anytime I wasn’t able to understand what someone in a group of people was saying. I also remember crying before having to present my thesis, I was stressing out over the fact that it would be very difficult for me to hear the questions being asked, but luckily I was able to hear the questions just fine and I ended up passing my thesis. It was at that point that I felt ready to confront the problem, but unfortunately I was not able to afford fixing it yet. It’s been five years since I left school, and I thought it would be easy from then on. But it’s quite the contrary, in school you can ignore one of your peers and they would think you are rude, you can forget the homework and you would ended up with a bad grade, but in real life things are different, you just can’t ignore your boss.

I just decided to go back to school again, but with that all of my fears about school came back. I questioned whether it would be a good investment if I was only going to be able to hear about fifty percent of what was being told. So I decided that it was the perfect time for the hearing aids. I have now had hearing aids for five months, I have tried two different brands and I’m getting used to them.  I remember thinking that hearing aids would fix absolutely everything, but I was wrong. Hearing aids help a big deal, but they don’t correct my hearing to “normal” level.

When I went to my class and found out that my hearing wasn’t as good as expected I decided to look for more help, somebody out there must have the same problem as I do, and I found it. I got in contact with the beautiful people of the Say What Club, and I discovered many people who were like me, who understand the struggle I go everyday. They were the ones that helped me find ways to cope better with my hearing loss. I asked and I got the help that I needed. Somebody told me to look for assistive listening devices or FM systems, other ones suggested CART system for the classroom, things that I had no idea that they could exist.

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One day I went the disabled student center of my community college. I actually had very little confidence going in. I was surprised when they lend me right away a FM system that consists in a microphone that the teacher wears and a receiver for me, which I can use with earphones or with my hearing aids. When I saw how positive the response was, I asked if they would allow me to use CART, and I got the thumbs up. I can’t believe it was that easy, I cried of happiness that day. I thought about how many times I missed information in class, and I couldn’t believe that I would not have any problem hearing now. I had mixed emotions.

In the beginning I felt a little bit weird, because everybody would know that I can’t hear. But once that I saw the results and how much it helped me,  I no longer felt embarrassed. So, here is how it worked. The disabled student center contacted this company of captioners who would send somebody to type everything that’s said in the class. Just like subtitles at the movies! Isn’t that amazing? By the time I’m in class I sit wherever I want and have my laptop, iPad or the tablet provided by the captioner. I need to have good internet connection, so I go to my email inbox and open a new email with a link to get access to a meeting room, check the picture. I can make the necessary changes to the font size and color of the screen. When the class is over, the captioner sends me a detailed report of everything that was said in class in less than 24 hours, much better than taking notes in class! I love to read it after class so I can study it. During class I try to understand as much as I can and I read from the tablet every time that any of my peers speak. I totally feel more involved in class. I’m happy to know that now I really understand what’s going on in class.

Obviously there are still some issues with the CART. For example we couldn’t set it up entirely a couple of times due to slow internet. Another time I tried an app which lets me see the same screen as my captioner, but that would make everything appear after a five second delay or so. Even with normal Internet there’s a little delay since my captioner would hear and how fast she can type.

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I don’t feel left out of class nowadays. As I can follow better what’s going on in class I can participate more, and feel more involved. I’m really looking forward to attaining my masters degree, and also helping other people just like me, who does not know about all the ways we can get the extra help for coping with hearing loss. I wish every kid in school could know about CART, if your school doesn’t offer CART for now, let other people know about it. Think about this, maybe in the future someone else can benefit from CART just like I am right now.