A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Advocacy’

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?

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.