Revisiting The Social Challenges of Hearing Loss

*previously published, August 2, 2013

"The Social Challenges of Hearing Loss" as seen in ALDA News

Many of you who are members of ALDA (Association of Late Deafened Adults) received the latest ALDA News, Summer, 2013 Volume 29, Issue 3 this week. The Editor, Nancy Kingsley contacted me and asked if I would be interested in submitting something for them along theme of social challenges regarding hearing loss. It was a privilege to be asked to submit an article, and a pleasant surprise to see my story on the front cover.

Have you ever had an embarrassing moment of miscommunication? I have, numerous times. Here is one of my more memorable moments...

The Social Challenges of Hearing Loss

By Joyce Edmiston

You might think that as a child with a hearing loss, I would have grown up being used to social situations where it is difficult to follow what is being said and what is going on. It wasn’t like that for me. In fact, in many ways, I was socially stunted because of my hearing loss.

Much of what goes on is accessed through the ears. Conversations are happening around us everywhere we go, and people learn about social graces by listening to the comments of others. (This is called incidental learning.) We learn how to use words to convey emotions, social norms, acceptable behavior, and small talk. On more than one occasion, people have mentioned that I don’t waste much time getting to the point, and as a result, I sometimes come across as rude. I’m not actually being rude—I just know that by the time I get to the end of small talk, I’ll be worn out from trying to follow the conversation and be so mentally exhausted that I’ll miss important parts.  I’m sure some of you reading this can relate. It’s so much easier just to get to the point, but that’s not the norm. People talk a lot without saying much before arriving at what they actually want to communicate. The small pleasantries of discussing the weather, asking how the family is, and even a simple “how are you” can turn into a huge discussion.

I’ve noticed through the years that as my hearing deteriorates further, it becomes easier for me to talk a lot about nothing just so I won't have to ask the other person time and again, “I’m sorry?” or “Could you repeat that, please?”  If I do most of the talking, there is less chance that I will answer inappropriately. That is my biggest fear when it comes to socializing, and I spent many years isolating myself because of it. I don’t know the scientific name for this phobia, if there is one. It was never a problem for me until I went to the dinner party that changed that. 

I was married to a military police officer in the early 1980s. This was before I got my first hearing aids. (It was actually this man who set me up with the audiologist that prescribed my first ones, courtesy of the U. S. Army, while we were stationed in Europe, but this happened after the story I’m about to tell you.)

That husband—I’ll call him  M.P. for military policeman—received orders to report to Hunter Army Airfield in Savannah, Georgia. I was 22 at the time. We opted to live off base in a house near Kings Ferry and Ogeechee. The landlord lived on the other side of the watermelon patch behind the rental. He was very friendly, the epitome of Southern hospitality, and invited us to his home for dinner the next day with some of their friends. His wife, he said, made the best barbeque in these parts. Although I was nervous about meeting new people and making new friends, I knew it was important to accept the invitation.

M.P. went through processing the next day.  He had a bad reaction to the typhoid fever vaccination and was sent home early.  He began developing a fever and needed to get into bed. By now, it was late afternoon, and we were expected at Mr. and Mrs. Landlord’s house in just a couple of hours. While I was debating whether I should stay home and be a nurse, M.P. said to just go to the neighbor's for dinner. It wasn’t like I was driving across town—I would be right next door, and he wanted to be left alone and sleep.

I walked past the watermelon patch up to Mr. and Mrs. Landlord’s home. Mr. Landlord introduced to their adult son and their friends, a young couple. The gentleman was an officer from the base where  M.P. was just processed. I don’t remember much about his girlfriend other than she was lovely and so soft spoken that I didn’t hear her well. I let them carry the conversation and I didn’t say too much.

As the hostess prepared each plate, I began to lose my appetite. The meat was a gray stringy concoction with a watery gray sauce. Not wanting to be rude, I began to think about what I could say so she wouldn’t put as much on my plate as she was giving everyone else. When she looked my direction as she picked up a plate, I requested, “Not too much for me, if you don’t mind. My husband and I had a very late lunch today.”

While I was watching the hostess as she began putting a small portion on my plate, the officer sitting across from me asked, “Where is he at?”

 "He’s home in bed,” I replied.

Mrs. Landlord frowned and gave me an odd look. I glanced at her husband, who gave me a very stern look. Then I looked at the officer who had asked me the question. His face was red, and it looked as though he was trying to keep from laughing.

Warning bells went off in my head. Something just wasn’t right. I asked the officer, “You did ask me ‘Where’s he at?,’ didn’t you?”

Still red-faced, he slowly shook his head no. “I asked, ‘What did you have for lunch?’ ”

To say I was greatly embarrassed is an understatement. To this day I don’t remember what the food tasted like, what we talked about, or anything else other than how quickly I left for home with the excuse, “I need to go check on my husband.”

I can laugh about this today, because it really is funny. However, back when I was young, inexperienced, and awkward in social gatherings, this misunderstanding caused me to not go anywhere socially without M.P. I lost many wonderful opportunities by allowing that moment to define my social choices. I missed out on friendships, meeting fascinating new people, and traveling with other military wives when we were stationed in Europe. As a young woman, I didn’t know how to explain my hearing loss or advocate for myself.

This is why I believe it’s so important to have support groups such as ALDA and HLAA (Hearing Loss Association of America) and why I love reading stories about other deafened, hard of hearing, and Deaf people. I also think it’s why blogging is on the rise among us. If you haven’t checked out some of these blogs, I encourage you to do so. You’ll learn, you’ll laugh, you’ll cry, you’ll understand, and you’ll relate. Here are a few blogs I like to visit:

Amy Sargent aka Deaf Girl Amy is a wonderful writer, advocate, and blogger at http://deafgirlamy.com/thriving-deafie-spotlight.html

Be sure to check the trailer for Amy’s book, A Survival Guide for New Deafies, at http://www.youtube.com/watch?feature=player_embedded&v=qfk0pnt9fDQ

Author Shanna Bartlett Groves, aka Lipreading Mom, blogs at http://lipreadingmom.com

Mike McConnell has been blogging about deaf and hard of hearing issues the longest: http://kokonutpundits.blogspot.com/?m=1

Charlie Swinbourne, a TV screen writer in the UK, publishes an international e-daily, “The Limping Chicken,” athttp://limpingchicken.com

If you’re looking for a place that covers a wide variety of issues regarding deafness from bloggers around the world, check out http://www.deafread.com

For the top blogs that cover deafness, go to http://deaf.alltop.com

While you’re at it, stop by my blog athttp://xpressivehandz.blogspot.com , where there is something new each week. I also encourage others to guest post. Do you have something on your mind you would like to share? Email me at xpressivehandz@hotmail.com and put “Blog Post” in the subject line.

Oticon Advocate of the Year Voting to Close July 15: Be sure to vote!!

Vote for Joyce Edmiston (Xpressive Handz) in the 2014 Focus on People Awards! 

Vote Online at oticonusa.com now through July 15 

Oticon, Inc. has narrowed this year’s finalists down to nine outstanding people with hearing loss who are helping to change negative stereotypes of what it means to have a hearing loss.   

Each is unique, remarkable and inspiring.  And we are pleased to announce that Joyce Edmiston has been chosen as a finalist in the Advocacy category! 

Please help us recognize Joyce as one of the top finalists by casting your vote at oticonusa.com. 

This is the 16th year that the Oticon Focus on People Awards has honored hearing impaired students, adults and advocacy volunteers who have demonstrated through their accomplishments that hearing loss does not limit a person’s ability to make a positive difference in the world.  

We encourage you to read all of the stories from this year’s finalists.  Our goal is to help Oticon reach as many people as possible with the inspirational stories of the Focus on People Award finalists.   

Please share this email with your family, friends and anyone you think would enjoy reading about the accomplishments of some remarkable people with hearing loss who show that hearing loss does not limit a person’s ability to achieve, contribute and inspire. 

And please encourage them to vote for Joyce! 

Voting closes on July 15. Winners will be announced in August. 

Page Break 

2014 Oticon Focus on People Awards – Advocacy Category Finalist 

Joyce Edmiston 

As a child with hearing loss, Joyce Edmiston lost many opportunities to interact with other children in social and school activities. As a young adult, she recognized that “I missed out on friendships, meeting fascinating new people . . . I didn’t know how to explain my hearing loss or advocate for myself.”   

Over time, with encouragement from her husband, bloggers and Hearing Loss Association of America, she gained the courage and wisdom to make her voice heard in a hearing world.  

Today, Joyce freely shares her hard-won knowledge as a vocal advocate for people with all degrees of hearing loss. Through her popular blog Xpressive HandZ (http://xpressivehandz.blogspot.com/), Joyce provides a forum for discussion of a wide range of issues for people with hearing loss around the world.    

Her insightful, heartfelt postings aim to generate thought-provoking discussion that allows others to be “heard” as well.  All viewpoints, opinions and stories are welcome.  Joyce writes, “I love reading stories about deafened, hard of hearing, and Deaf people. . .  you’ll learn, you'll laugh, you'll cry, you'll understand, and you'll relate.”  

A scan of her posts reveals the scope of her efforts to encourage the teaching of ASL in schools, to inform the deaf and hard-of-hearing population of valuable, useful information, and to meet the communication needs of those who do not use sign language as their primary mode of communication.   

Though passionate about the teaching of American Sign Language (ASL), Joyce formed a committee to educate local churches the need to provide captioned services for those who do not communicate by sign language.  This same committee brought live captioning to the Giant Center in Hershey, PA for the first time. 

Joyce volunteers with the Telecommunications Relay Service Advisory Board for the Pennsylvania PUC, the Collaborative for Communication via Captioning, and with HLAA at both local and state levels. 

Vote for Joyce here: http://www.oticonusa.com/about/people-first/focus-on-people/overview/joyce-edmiston.aspx

Part 2 of series "The Mastery of Change, Choosing Mental and Emotional Wellness" by Sean Morgan

This is part 2 in the series by Guest Writer, Sean Morgan:

Hello, this is guest blogger Sean Morgan. Last week, I was able to share the introduction to a book I wrote called "The Mastery Of Change, Choosing Mental and Emotional Wellness". I wrote this book after I was able to let go of some very debilitating patterns in myself and embrace a pattern of positivity that continues to spiral ever upward. I'm a very curious person by nature. I wanted to know how I did it. So after some very intense reflections and conversations, it started to come out. Without too much reference to other philosophies or therapeutic models, I attempted to explain how our mind/body/spirit system works without jargon. I realized that I was attempting something very ambitious, but I figured that if even one person with similar struggles as myself would benefit, it would be worth writing and sharing. What came out surprised myself, because I have never attempted to write a book. As an unacademic person, I was able to talk about emotions, beliefs, confidence, achievement, and healing change from a very practical perspective. I include writing prompts and reflections throughout the book for people to actively participate in the learning process. Here is the second installment of the book. I hope it gives you insight and practical tools for your daily life.

Our understanding of emotions and unseen bioenergetic fields is very basic.  In this book I create an imaginary model and use metaphors to demonstrate how I understand emotions in my personal experience.  These models, much like the models of atoms first created by Niels Bohr and others, are not accurate.  They are educated  guesses to explain how the universe works.  I do not ask that you believe these models just because I suggest them.  I would encourage you to use the exercises and see for yourself if these models accurately predict how energy flows in your body and your life.  New age people as well as scientists throw around the word energy quite a bit.  According to science, everything is made of waves of energy, including matter.  I use the term to describe any wave that cannot be seen.

Through a physical regimen that includes a diet of water, nutritious food, and moderate challenge to our bodies (exercise), we develop strong bones, tissue, fat, and muscle.  These become our physical resources that we can use to live off of in times of crisis.  It is a wonderful system for resilience.  We also have an intelligence within our bodies that discards toxins, which are substances we ingest that do not serve our survival.

Another layer of our being is our “emotional body”.  The result of how our system responds to the total of all input at any given point is our emotional state.  Our being filters the energy in our field including food, sound, thought waves, and all other stimulus.  The result of this filtration of energy is a physical response which ranges on a spectrum from positive and life-giving to negative and life-destroying, with neutral in the middle.  We have many words to describe what it feels like when energy is flowing freely, elegantly, and efficiently through our bodies, feeding our organs and body parts.  They are the positive emotions.  There is also a lexicon for the overall feeling we get when sluggish death-causing energy stagnates within our being.  They are the negative emotions.   Yes, negative emotions cause disease.  In fact, according to Lett et al, depression could be a causal factor for heart disease (2004).  

Clinical neuropsychologist Dr. Mario Martinez does fascinating research on cultural programming and emotional causes of disease.  In one of his papers, he demonstrates that women in different cultures experience menopausal symptoms differently depending on the cultural beliefs about them.  You can access his research at Biocognitive.org.

We know that we have to bring in fresh, clean nutrients and cleanse ourselves of toxins through elimination processes to be physically healthy.  We know that we have to build our bodies through moderate challenge.  Although we can try to blame genetics and others if we are fat, the truth is hard to deny.  We do have free will regarding what we put into our bodies and how much we challenge our bodies through exercise.  I encourage you to take a stance of responsibility for your emotional body as well, for it is indivisible from your physical body.  

You must feed your body with positive emotions on a daily basis.  See the reference section of this book for research linking positive emotions and physical health.  You must eliminate toxic negative emotions when they come up as well.  Every behavior in which you engage has an emotional result.  Through awareness you will know which behaviors are emotionally healthy and which ones are not.  Just like exercise, building a healthy emotional body takes effort and can be uncomfortable.  When you make the conscious choice to change from a negative pattern to a positive one, the change itself is uncomfortable but has an undeniably wonderful result.  This book has exercises that you can practice to build a healthy emotional body so that in times of crisis and intense challenge, you have the inner resources to adapt, survive, and thrive.

It’s difficult to talk about the emotional body, the physical body, and the mind with its thoughts and beliefs because they are not separate.  The scientific world tends to categorize and compartmentalize phenomenon that is actually connected.  Even so, using words and concepts with which people are familiar will help me to illustrate a more integral understanding.

In the same way that we cannot survive without food, we need positive emotions to survive.  Furthermore, we cannot survive with only negative emotions.  That would be like eating a diet of poison and never eliminating it. The experience of negative emotions in our lives is inevitable, in the same way that the experience of toxins in our environment is inevitable for our physical bodies.  Physical health is so straightforward; you just eat clean natural food and have regular elimination of toxins.  But what about emotional fitness?  How do we build our emotional body so that we can endure times of crisis and starvation of emotional nutrition?

Emotions are not the subject of as many scientific studies, so we have to work with limited understanding and create a mental model of how they work.  It’s hard to imagine a problem with being too happy, too kind, or too positive.  But drug, sex, and food addiction come to mind as ways that people seek to feel positive emotions in an unhealthy way.  This is where the conscious mind has to step in and recognize that the initial positive emotion is just masking a longer-term negative effect.  

A negative emotion is one that you would prefer not to feel.  How do we release them?  When you realize that you are feeling a negative emotion, that’s a good thing because you’ve taken the first step toward releasing it, which is realizing that it’s there.  Here comes the counterintuitive part: the trick to releasing it is to keep your consciousness on it and feel it moving inside you.  Follow it with your mind.  Feel the breath slowly encouraging its release.   Breathe into the area of your body where you feel the contraction, and consciously relax there.  

Reflect:

When do you feel positive emotions such as contentment, confidence, and joy?  What do they feel like in your body?

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Which emotions do you feel victimized by?

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When do you feel these emotions?

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What does it feel like in your body when you experience them?

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How do you deal with negative emotions?

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What positive strategies do you have to work with negative emotions?

(ex: I count to ten when I experience a strong emotion instead of refueling it with my thoughts.)

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What are the strategies you use that make things worse?

(ex: I yell at my son when I feel angry.)

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How Beliefs Relate To The Emotional Body

Beliefs are pathways that allow energy to flow through our beings.  It is a whole-body pattern, but I’ll talk a lot about the brain in this book because there is more scientific evidence available for it.  How the flow of energy feels to us is called an emotion.  If you believe that being alive is something to be grateful for, then you will feel a positive flow of emotion upon waking because you will realize that you are alive.  If you believe that you have to go to work to survive and you don’t enjoy work, then you will feel the opposite way when you hear the alarm clock.  

When I had depression, I had many beliefs that kept happiness at a distance or caused me pain.  I remember when I first learned that we have the power to deconstruct our own beliefs.  It was a major breakthrough for me.  I started to watch my own thoughts and laugh at how unhelpful they were.  Specifically, I remember when I got up the energy to go for a run.  Even though I rarely exercised and I was finally doing something helpful for myself, I had repetitive thought patterns about how I should be running faster and should be able to run longer.  I was abusing myself with these thoughts.  As soon as I realized what my belief was and deconstructed it, I could run in peace.  If the word “should” is in your thought, it is a clue that your thought is resistant to reality, and is therefore causing pain.  

Take responsibility for the belief.  It may stem from genetic predisposition or environmental conditioning, but the choice is now yours to tear down the pathway and build a better one that takes you straight to the destination of happiness.  Just releasing a negative emotion is like taking an aspirin for headaches.  Headaches are often relieved from headache medicine, but headaches are never caused by lack of medicine.  It is YOUR belief that caused you to feel the negative emotion.  By all means, take a pill to take care of the symptom, but then cure the disease!  Many headache medications contain vasodilators that allow blood energy to flow more.  You will see this trend repeatedly.  Constriction causes pain.  Relaxation causes happiness.  Of course life is a balance between the two, but most people are too tense!

A belief is a strong pattern through your entire being. In Hindu tradition, the term is samskara.  A compartmentalized way of looking at it is a pathway through your brain.  Every time you use a thought pattern, it becomes more engrained and your brain gets better at using the pathway.  When other pathway options come up, your brain likes to choose the highway because it is an easier, more familiar and well-trodden path.  

Reflect:

Write down the top ten beliefs that bring up the most emotion for you (positive or negative).  You can keep the positive and you can deconstruct the negative.

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My strongest limiting belief about myself is:

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My strongest positive belief about myself is:

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My strongest limiting belief about my body is:

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My strongest positive belief about my body is:

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My strongest limiting belief about relationships is:

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My strongest positive belief about relationships is:

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My strongest limiting belief about my mother is:

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My strongest positive belief about my mother is:

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My strongest limiting belief about my father is:

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My strongest positive belief about my father is:

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My strongest limiting belief about money is:

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My strongest positive belief about money is:

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My strongest limiting belief about my career is:

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My strongest positive belief about my career is:

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"Deaf for a Day" by John Barrowman video

I want to thank my friend and life coach, Christine Carver for pointing me to this video. The gentleman described feelings of frustration and isolation. This is what we who are deaf or living with hearing loss feel like on a daily basis. We get tired trying to communicate and navigating with hearing loss in a hearing world. I wish more people could experience what we do as John Barrowman did in order to help raise awareness and funds for Hearing Dogs.

John Barrowman 
"Going deaf for the day was one of the most insightful yet exhausting days of my life. Please donate now to help Hearing Dogs train more life-changing hearing dog puppies." 
Read John's blog"

http://blog.hearingdogs.org.uk/deaf-for-the-day/

"Firework" ASL Interpretation by Jason Listman

I love the ASL interpretations Jason Listman posts on YouTube. This one is Katy Perry's "FireWork".
Speaking of "Firework", have a great and safe 4th of July weekend!



http://www.youtube.com/watch?v=eOEdqV5iRcY

Hysterical!! 38 Wonderful Moments in Closed Caption History

I laughed out loud. Everyone will enjoy these. My friend Ken Mueller posted this on my Facebook timeline. Thanks, Ken, for the belly laugh!!

http://www.buzzfeed.com/mrloganrhoades/38-wonderful-moments-in-closed-caption-history?bffb