Fundamental Attribution Error

hershey park

I drive my family crazy sometimes. I have psychology on “the brain”. Things I’m studying, things I’m teaching, things I’m thinking about (the dreaded dissertation looms after all), I tend to talk about. I mean a lot. Even when you don’t want me to.

Spring is a busy month for Hearing Elmo. For some reason, lots of folks tune in and contact me. I love to write (even email responses) so I don’t mind at all. To me? This is what Hearing Elmo is all about. I’m glad to be a small part in helping to raise awareness about invisible disAbilities and chronic illnesses. I learn SO MUCH from so many of you who write. So thanks! 🙂

Lately, I’ve had a lot of conversations both email and face-to-face with folks who are struggling with bad thoughts. Thoughts about strangling someone.

Even though it’s deserved.

People with disAbilities or chronic illness are often judged. Sometimes it’s a first impression. Sometimes it is by someone who knows better. I want to cover both today. In psychology we call this the “Fundamental Attribution Error”. Lilienfeld, Lynn, Namy, and Woolf (2013), explain that the fundamental attribution error “refers to the tendency to overestimate the impact of dispositional influences on other’s behavior. By dispositional influences, we mean enduring characteristics, such as personality traits, attitudes and intelligence. Because of the fundamental attribution error, we also tend to underestimate the impact of situational influences on other’s behavior” (p. 501). It’s that last part I want to talk about in this post.

People with Disability or Chronic Illness are Misunderstood

If you are reading this post you likely have some connection to invisible illness or disAbility. Perhaps your condition is not invisible at all. You may live with personal challenges.

easter 2014

Easter Sunday I came home from church with husband and hound dog and went downstairs to work. After about 20 minutes I came to the realization many of you do each and every day. I was wiped out. I knew I would get far more work done if I went upstairs to take a nap. Some folks call these “power naps”. Me? I’m not going to sugarcoat it. I need naps sometimes because I have Meniere’s disease and hear with a cochlear implant. I’m 47-years-old. I get tired. I get tired a lot! So trudging upstairs I passed my husband in the family room and said, “I’m going upstairs to take a nap“. I stood there a second to see if that elicited any reaction.

Now Terry has been married to me long enough to know that if I actually say I need a nap, you better let me take a nap. No smart remarks. He only said, “Be sure to close the blinds or Chloe will bark at every little thing“. I’ve “trained him well“, yes?

But it isn’t easy being the significant other of someone who has a invisible illness or disAbility. When Terry first married me I was only unilaterally deaf and no balance disorder to speak of. Fast forward 28 years and I am now at a point where I can still do a lot. I have dreams, goals, work hard, am a wife, mother, mentor, teacher, student and writer… and I take naps.

I have been out and about before running errands or just shopping with my best friend – Terry Portis. I have out of the blue said, “Ok. You need to take me home.” The last time this happened we were going to a super Target. We had just parked in the parking garage and Terry started to get out. “Ok“, I said. “You need to take me home“.

He stopped and looked at me. After a long pause he asked incredulously, “You mean… now?

I looked at him eyeball to eyeball (which can be uncomfortable with the risk of losing your contacts – but I needed him to know I meant business). “Now” I responded.

So we went home. Sometimes when I “run out of gas” I do so very suddenly. There can be little warning. You could make me push it and we’ll both risk the reality of a major nosedive in “Lawn and Garden” with mild concussion and concerned gathered crowd to show for it. (Clean-up on aisle twelve…)

None of us ask to develop acquired disAbilities. No one prays for a chronic illness. People we know and love may get peeved at us that we require more rest than we use to need. Part of it may be that they miss doing things with you that they use to be able to do. My husband loves Target. But sometimes? Well sometimes you need to take me home and do it NOW. That can be hard.

So those of us who have the chronic illness or disAbility need to be understanding too. But… don’t be afraid to talk about it. One of my favorite “opening statements” for a heart-to-heart conversation begins like this:

“When you say (or do) _________________ it makes me feel like _______________.”

It lets the people I care about know that it DOES bother me when they say or do something – not seeing the whole picture. They don’t understand the situation well enough to get why I behaved a certain way or responded a certain way. So I need to remind them. That’s OK.

If you are the “significant other” – try to put yourself in the other person’s shoes. You don’t want to really know what they are going through for that would mean you’d have to share the disAbility or diagnosis to really get it. What they are going through is really… REALLY…

HARD.

But you know what? They can get through it because you are there to help them, encourage them, and cheer them on! (So don’t forget how influential you can be, OK?)

For Those Who Don’t Know me

Several times a year someone who doesn’t even know me will say something that I almost come unglued about. I have one of those moments where I want to strangle someone. But in most states that is still against the law…

Costco, October 2013: I was in the meat section trying to decide how many crock-pot size meals I wanted to make in the next couple of weeks when I heard a woman about 3 feet away say, “Oh MY GOD!!!!!!!!!!! A dog, in the meat section. I’m going to complain to the manager“.

I turned around and saw this woman standing there with hands on hips and an embarrassed husband standing next to her. Well my friends? Sometimes good sense just rushes right out of my head. I pointed my finger in her face and said, “This is a service dog. I am late-deafened and have a balance disorder. This dog has picked up dozens of things for me since I’ve been in this store for the last 20 minutes. You shouldn’t judge what you don’t know. I’d rather have disAbilities than be stupid. You can’t fix stupid“. And I walked away.

Amidst applause. For it seems we had drawn a crowd.

Yet I will be honest with you. More times than not I do NOT get to say something pithy and intelligent. Sometimes my heart is broken. Sometimes I walk away crushed. Sometimes I strangle people. (Ok, maybe not but I may FEEL like it).

It can be really hard when people judge what they don’t know. After stumbling into an end cap at a store I had a person jest, “Little early to be drinking, isn’t it?” I could get mad and “let it rip”. Or strangle. Cuz yeah I’m a little sidetracked by how satisfying that would be right now. But folks don’t know me. They don’t know my reality, or my day-to-day situational influences that have me moving, responding, and requesting naps. Then I have to make a decision.

A) Strangle them

B) Scream at them

C) Walk away. It isn’t worth it.

“C” is the best response most of the time.

———

Do you get tired easily? Does fatigue trigger headaches, body aches, and brain fog? Do you sometimes just need a NAP? People may not understand that. They may think you are being lazy. They may think you should try harder. They may need strangled…

… with the truth. So tell them!

Denise Portis

© 2014 Personal Hearing Loss Journal

Lilienfeld, S. O., Lynn, S. J., Namy, L. L., Woolf, N. J. (2013). Psychology: From inquiry to understanding (3rd ed.). Boston: Pearson Publishing.

 

 

Make a Difference

make a difference

My paternal grandmother passed away unexpectedly on March 28th. She was instrumental in my becoming, well – ME. I told her the FIRST time how important she was to me at Silver State Youth Camp in the Rocky Mountains when I was 13-years-old. I made it a point to tell her at least once a year, and to my knowledge never missed a year of telling her how important she was to me.

We have people we care about, and then there are usually a smaller group of people who influenced who you are. I’m convinced we do not have a whole lot of opportunities in life to invest ourselves THAT WAY in the life of another.

Searching for Significance

One of my favorite books is by Robert McGee. Searching for Significance is something all of us long for I believe. Something it took me years to learn, however, is that “significant” is what you deem important. What I think is significant and life-changing, may not mean a hill of beans to you. And that’s OK. We can’t find significance by asking others how they measure that. Significant things are as unique as people are. This is why so many of us are invested in causes, hobbies, and community service. For US, these things add significance to our lives. We want to make a difference by being involved.

One of my favorite quotes is by Joseph Campbell. “Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.”  I find this rather profound. WE bring meaning TO life.

Life is hard. Living with disabilities is hard. Living with adult children at home is hard (not really but I had to throw that in there). If I expect my life – with all it’s trials and successes, joys and sorrows, to provide meaning, I’ve missed the whole point of living.

Some folks think they are not in a position to make a difference. You don’t have to have money or advanced degrees to make a difference. Everyone has some kind of talent. I have friends whose disabilities are severe enough they are really home-bound. Yet they have made such a difference in my life through the short emails or messages they send me – right when I need encouragement the most. I have had people I don’t even know make a difference.

I will never forget the homeless man I met at the inner harbor in Baltimore. My “quick diagnosis” was schizophrenia. He was a beggar, entertainer, and to many a nuisance. He stopped me to ask about my service dog. He asked if he could have her and promised to take good care of her. When I explained what she does for me I actually got choked up. He listened attentively and then squatted down and held her head for a moment. He muttered something to her and I couldn’t make it out. (It hadn’t registered with him that I said I was late-deafened). He looked up and said a little louder, “I was jus’ tellin’ her to be the best dog for you she could be because life is short. She makes a difference so she has to count now, not tomorrow”. I was like, “Woah.” That has stuck to me like super glue for 6 years now. It has inspired me to make a difference TODAY. We aren’t promised tomorrow to make a difference. Count now.

Just Remember to TELL THEM

If someone else does something that makes a difference to you, won’t you tell them so? It doesn’t have to be a huge announcement. It doesn’t have to be a flamboyant gesture. No need for helium balloons and streamers. Just tell them, “You made a difference”.

My grandparents... together again.
My grandparents… together again.

We need to let others know when they influence us or inspire us. Who am I because of my grandmother? Those who knew us both tell me I get my stubbornness from her. They also tell me my love of dogs, singing voice, hair color, and ability to confront people with courage all come from her. The reality is that even when my life began to change as the result of Meniere’s disease and deafness, her letters made a difference. She is a writer, and encourager, a cheerleader, an advocate, a teacher, and a legacy-builder. When she wrote, a common theme included near constant reminders that *I* could still make a difference. She encouraged me to be an advocate.

I am.

She encouraged me to write.

I do.

She told me I should not be afraid to speak and present to others.

I’m not and I do.

Her legacy of “making a difference” spans generations.

Very likely I do not know you personally. However, I do know that you *POINTS THROUGH YOUR COMPUTER SCREEN* can make a difference. It doesn’t have to be big. Betcha it is big to someone else though! That is what making a difference is all about.

Denise Portis

© 2014 Personal Hearing Loss Journal

Hearing Loops Come to Oshkosh

Juliette Sterkens
Juliette Sterkens

Hearing Elmo welcomes guest author, Juliette Sterkens. Juliette Sterkens, AuD is a Wisconsin audiologist with 30+ years of experience in the field of audiology and hearing instrument fittings.  Dr. Sterkens is currently on a sabbatical from her audiology practice to speak around the country to consumers and hearing care professionals on the use of hearing loops in behalf of the Hearing Loss Association of America.  Her efforts have leveraged nearly 300 hearing loop installations in the Fox Valley and Wisconsin and many more beyond. She is the creator of the www.loopwisconsin.com website and her blog at http://loopwisconsin.wordpress.com .  She has received the Wisconsin Audiologist of the Year, the American Academy of Audiology Presidential Award and the Humanitarian of the Year Award from Arizona School of Health Sciences for her work on a local, state and national level.

Chris Prust of Oshkosh is one of 36 million Americans with a significant hearing loss.  Although she wears a hearing aid and a cochlear implant, it is still difficult for her to clearly hear and understand amplified speech in churches, auditoriums, or meeting rooms.  As a member of the Algoma Boulevard United Methodist Church in Oshkosh, she was delighted at the results the first Sunday the church turned on its new hearing loop system.  “I’m home now and can’t stop smiling.  The system went way beyond meeting my expectations.   I was in awe.  I thought I would never again be able to experience a church service where I could hear every world and be able to follow along with the music knowing I was singing the correct and note and verse,” Chris said.

A hearing loop takes a signal from a sound source — a television or a public-address system, for example — and transmits it through an amplifier to a wire that surrounds (“loops”) the audience. That wire sends a magnetic signal to a person’s hearing aid, which has a telecoil, a type of sensor. The hearing aid wearer then gets a direct, clear signal, one without interference from reverberation and crowd noise.

Hearing loops are most commonly found in auditoriums, concert halls, places of worship and lecture halls but  new applications make it useful for ticket booths, taxis, tour buses, service desks and airport gates. While public installations require a trained installer, a TV or computer can be self-installed by a handy individual. Hearing loops have been in widespread use in public venues in England and the Scandinavian countries for some time, and are now starting to catch on in the United States. (See www.hearingloop.org)

Jim and Vicki Denzin, parents of three daughters, two of whom use hearing aids, are grateful that St Raphael Catholic Church in Oshkosh has installed a hearing loop. “Our girls are now able to understand Fr. Doug so much better” they commented. So pleased were they with the hearing loop technology they also installed a system in their Neenah home. Jim commented installation only took an hour and was not hard to do. Vicki reports her girls love using the loop in the TV room but is also quick to point out that it makes it easier for the girls to ignore their mother when they are watching TV. The loop has one other downside Vicki laughs, “The loop broadcasts to other areas of the house including the upstairs which meant we quickly learned to turn the loop amplifier off when it is bedtime, otherwise they pick up the TV’s audio while in their bedrooms!”

Hearing loops make public facilities accessible for people with hearing loss and brings them in compliance with the Americans with Disabilities Act. In the Fox Valley many libraries, nearly a hundred large churches, the Fox Cities Performing Arts Center, the Oshkosh Convention Center, funeral homes, the Grand Opera House and several retirement communities and senior centers all have taken the initiative to install hearing loops to better serve people with hearing loss.  A list of loops of loops around the country  can be found at www.aldlocator.com

“It is not because the sound is not loud enough, that people who have hearing loss complain that they can’t hear” said audiologist Dr. Juliette Sterkens, an Oshkosh audiologist at Fox Valley Hearing Center, who is on a sabbatical from her practice to
serve as the Hearing Loss Association of America’s hearing loop advocate, “it is because the reverberation and background noise in large rooms and churches make understanding very difficult for persons who use hearing aids. A hearing loop helps to overcome this problem”

Sterkens started a Hearing Loop Initiative in early 2009, similar to an initiative in Michigan (see www.loopwisconsin.info) and today nearly 300 hearing loops can be found around the state.  Sterkens continued “Hearing loops can profoundly affect people who use hearing aids.  When Chris Prust told me that the day the hearing loop was turned on at her church, was one of the most memorable moments in her life because it made her feel “normal’, we both cried a few tears.”

– Juliette Sterkens, AuD

———

 

When Lightening Strikes TWICE

Wendi, husband Dave, and daughter Paige at a Hearing Loss Association Convention
Wendi, husband Dave, and daughter Paige at a Hearing Loss Association Convention

Hearing Elmo welcomes, Wendi Tirabassi Kast, fellow blogger and cochlear implant buddy. Wendi writes at “Sudden Silence” (http://suddensilence.wordpress.com/). I have been a big fan of Wendi for years now. She writes about LIFE – life with hearing loss and cochlear implants. Life with other kinds of struggles – but her posts remind me that this is LIFE. Her positive attitude and quirky sense of humor connects with me – and I think will with you! You should check out her blog – she frequently updates and every read is worth the time to check in!

In 1993, when I was 28 years old, I lost all of the hearing in my right ear.

 I grew up with a hearing loss that was discovered when I was four years old.  I never expected to lose more hearing; nobody knew why I lost some of my hearing to begin with, but a high fever from roseola was what we suspected.  (Knowing what I know now, I would also suspect the antibiotics used to treat it back in the mid-1960s.)  I always thought my hearing would stay the same; in fact, I never really gave my hearing (or lack thereof) much thought at all.  I treated my hearing aid like I did my glasses … just an aid to help me with one of my senses.  I certainly never thought I might lose all of my sight some day, so why would I think I might lose all of my hearing?

 Finding out that all of my hearing had vanished virtually overnight, for no known reason, rocked me to my core.  I was absolutely devastated and terrified.  Suddenly a whole host of worries was presented to me, including the possibility of going completely deaf someday.  I woke up terrified every morning, wondering if I would lose the rest of my hearing that day.  I lived in the hearing world, not the Deaf world.  I didn’t know sign language; none of my family or friends knew it.

I spent two weeks without my hearing aid, because I wore the aid in my right ear and it was suddenly unaidable.  They made an ear mold for my left ear and ordered analog bi-CROS hearing aids for me.  While I waited the two weeks for my left ear mold to be completed, I had to navigate my hearing world using nothing but the hearing that remained in my left ear.  I did word processing for an industrial parts supply company; I could still type and do my job, but communicating with my coworkers was very, very difficult.

When my new ear mold and hearing aids were fitted, I was weak with relief.  Things sounded normal again.  The bi-CROS aids picked up sounds from my now-deaf right side and transmitted them to the left.  My hearing remained stable; I slowly began to stop worrying and started taking my new level of hearing for granted again.  I mean, this couldn’t happen to the same person twice, right?

Wendi with daughter Paige at her baptism in 1994 after she lost her hearing.
Wendi with daughter Paige at her baptism in 1994 after she lost her hearing.

When I realized the hearing in my left ear was getting a little strange, in early April 2008, I chalked it up to an illness.  It was that same kind of faint ‘hearing things from the bottom of a tunnel’ type of hearing that I get when I’m fighting a fever or virus of some kind.  I wasn’t sick but still assumed I was on the verge of something.  Well, I was … but I was on the verge of total, profound deafness, not a virus.

My husband scheduled an appointment with my otolaryngologist.  The day before my appointment, I woke up and realized I was completely deaf.  I could not hear anything.  My teenage children were leaving for school and I tried to keep it together until they left, but I was so scared.  I burst into tears in front of them, wailing to my husband, “I don’t want to be deaf!  I can’t believe I’ll never hear you guys talking to me again!”  I was completely hysterical.

Well, I gave in and let myself grieve.  It was only a few days before I realized I could only do so much crying and feeling sorry for myself.  I was still sad and scared, and I used my blog to express my feelings during this time.  But I also decided I had to move on and decide how I was going to live my life as a deaf woman.

My first concern was communicating with my family.  I had remarried in 2002 and my husband knew some sign language, so he began teaching signs to me and the kids.  We rented DVDs, bought books, and learned to fingerspell the alphabet.  We never did learn ASL but we learned enough signs to communicate and get the message across.  My speech reading skills kicked into high gear, and these really saved me.  My family was very, very patient – they made sure to face me, to speak at a rate that was easy for me to lip read, and would repeat words or fingerspell until I got it all.  They never said, “Oh never mind” or “It’s not important.”  They knew I wanted to be part of the conversation, important or not.

After a few big scares, my husband put up mirrors around my desk so I could see if someone was approaching from behind.  (It’s pretty terrifying to suddenly feel a hand on your shoulder when you aren’t expecting it!)  We ordered a free TTY from the state and got a flashing light for the phone.  I used online relay for phone calls as well.  I already had a bed shaker alarm clock and, of course, we were already using captions on the TV.  (My husband has a hearing loss as well so we both use these accommodations.)

I found out that I qualified for cochlear implants, and began the process of testing and insurance approval.  My hearing tests were easy; I sat in the soundproof booth, listening to nothing, until they opened the doors and said I was done.  I asked if I could get a cochlear implant in each ear at the same surgery.  Although it wasn’t done very often, they said it was no problem as long as my insurance approved it … which they did.  The whole process was quick:  I had my testing in May, my insurance approval in early June, and my simultaneous bilateral surgery was on July 22, 2008.

Wendi's cochlear implants from the back
Wendi’s cochlear implants from the back

On August 20, 2008, the hearing world came back to me.  The sounds that came into my brain that day were nothing like anything I’d ever heard before … but it was sound and I was speechless with delight.  If someone had told me back in 1993 that someday I would have little computers in my head, and I would hear sound again in an ear that hadn’t worked since before 1968, I would’ve just laughed.

As my brain learned how to hear with my new cochlear implants, my tinnitus faded away to nothing.  Every day, I asked my family to help me identify what I was hearing until finally I could identify sounds on my own.  With each mapping, things sounded more and more the way I remembered them.  I heard the voices of my husband and children, music, my cats meowing and my dog barking.  One day, as I was leaving the audiologist’s office, somebody asked me for directions.  They were behind me, and I heard them clearly without lip reading!

It’s been over five years now and I never, ever take what I hear for granted.  It’s been gratifying to know that I can deal with my deafness even if something happens to my CIs someday.  But every day that I wake up, put on my processors and hear the rush of sounds once again, I am thankful, amazed and humbled.

Significant Challenges Can Actually Help – our KIDS!

The video above was made in 2007. I was implanted with a cochlear implant in 2005 and matched with a service dog in 2007.

My kids have never known me with perfect hearing as my hearing loss began when they were born.

I’ll let the video tell the story.

Your thoughts? Have your own challenges influenced those closest to you?

Denise Portis

© 2013 Personal Hearing Loss Journal

I Don’t Like Music

cd player

“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou

If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!

I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at denise.portis@gmail.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.

Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.

Not a Great Example?

While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!

“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”

I was stunned.

Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.

But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.

Ummm… How is this Relevant?

You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?

We have to respect the individuality of other people.

I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.

I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.

Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!

But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.

There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.

United we Stand, Divided we fall

So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?

Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.

What are some things that have left you feeling peeved when judged by your peers?

Denise Portis

© 2013 Personal Hearing Loss Journal

I Stare at my Phone and LAUGH!

If I'm not married to you or if I didn't birth you... I'm just not going to talk to you on the phone! :-)
If I’m not married to you or if I didn’t birth you… I’m just not going to talk to you on the phone! 🙂

Last week after a meeting with Anne Arundel County Commission on Disabilities, I received a follow-up phone call about changes in a training that I would be participating in for the Public Safety committee. There are five of us on the committee, two of which (including myself) have hearing loss. I never give out my cell phone number, but do have a number that we use as our “home phone” through Google Voice. The reality is that Google Voice isn’t a phone at all. It transcribes messages from a messaging service when people call the number and leave a message. I receive both a written transcription and the taped message.

So I received the message with changes about our training and read/heard at the end: “Call me to let me know you received this”.

I laughed.

Out loud.

Twice.

I don’t use the phone. On rare occasions I will speak to my husband or grown kids on my cell phone. However, I know their voices VERY well. Sometimes I will talk to my mother but only long enough to ask her to switch to FaceTime. (Always helps to see the face to pick up more of the conversation). With all other people, however, I do not use the phone.

It isn’t that I cannot use the phone. It simply isn’t my first choice (or second, or third choice). If I want to talk on the phone I have to stop everything. No multi-tasking such as continuing what I’m doing on my computer, or folding laundry, or working in the kitchen. I have to sit (that’s right… I can’t stand!) switch to t-coil on my cochlear implant and hearing aid, close my eyes (I’m not kidding), and concentrate. How often would YOU be able to talk on the phone if this were the parameters for you to do so? <BIG GRIN>

Email is a Great Choice

email

Email is a great choice for people with disabilities or chronic illness. In my opinion, it is actually a great choice for everyone. Why?

1. Email gives a written record of exactly what was said.

It doesn’t really matter if the conversation is personal or business. A written record of what was actually said can help us better remember dates, times, and other important information.

2. Email fits into our schedule.

You can check email on many phones now. You can check email on devices such as iPods and iPads, and Kindle Fire. Many types of technology allow you to read and respond to emails no matter where you are.

When we need to respond to emails from our desks, something business related or important, we can do so on OUR schedule. No playing telephone tag. Instead you can read and respond at a time that is convenient.

3. Email can eliminate communication problems.

Have a habit of interrupting someone mid-sentence? Do you have attention-deficit disorder and are easily distracted by what is going on around you? Is the person you need to communicate with hard to talk to – angers easily, defensive, mumbles, etc? Email eliminates those kinds of problems.

4. Email is free.

Most of us have a computer at home now. If you do not, you likely have a way to access email through mobile devices or at least have a library nearby where you can access the Internet. There are numerous free email options. I personally use Google’s gmail for my email account. However, there are numerous free email options discussed at About.com. You can access that HERE.

Email can also be a great choice for people with disabilities or chronic illness. I am late-deafened and hear again with a cochlear implant. For me, email eliminates the pressure to HEAR. When folks get a hold of my cell phone number for some reason and call, I really do stare at my phone and laugh. Email can be read by special programs such as JAWS (a Microsoft computer screen reader) and written with Braille displays for folks with low-vision or people who are blind. Email font can be enlarged to assist those with problems seeing smaller type. Email can be a great communication device (along with various social media) for people who have difficulty expressing themselves and using their voice. Email may be easily accessed with various tools for people who have mobility issues. Email is available when you are ready to read/send communications… something that may be important to people who have Chronic Fatigue Syndrome, FibromyalgiaLymes disease, or other disorder where fatigue and pain are a factor. Can you tell I’m a big fan of email?

Some of you are thinking, “But I just want to hear your voice!” I totally understand that. Even as a person with hearing loss, I understand how important inflection, emotion, and accents may be in communication. We do need to be sensitive to the fact that there are a great number of people who do not feel the same way. Just because you like to hear someone’s voice with a phone tucked under your ear, doesn’t mean that others are able to have a hands-free, low-anxiety audible communication with you. Perhaps Skype would be a good choice for you – free to anyone with a computer or modern cell phone. FaceTime is rising in popularity with people who have Apple products. These communication devices allow people to both hear and see when communicating. You can even have conference calling!

I think the only thing I love more than email is texting! Unless, you want to discuss a major problem called autocorrect… but hey! That’s a topic for another post!

Denise Portis

© 2013 Personal Hearing Loss Journal

Deaf Children: Coping with Hearing Loss

Hearing Elmo welcomes guest blogger, John O’Connor. John shares that hearing loss has been an important topic as his own father has hearing loss. He explains, “I feel that there is a general lack of understanding around the issue of hearing loss and it is our job, or my job as someone who is close to the issue, to try and spread awareness when possible. Many people think that hearing loss only affects adults or elders. Since it is Better Hearing and Speech Month I thought it would be fitting to inform people on how hearing loss can affect anyone, even children.”

Hearing is essential for learning and communicating with others. Statistics show that two out of every 100 children have some degree of hearing loss. If kids cannot hear the world around them, they may experience delayed speech, language, academic and social development. What causes hearing loss, and how can deaf children overcome this obstacle?

Causes and Treatments

Early detection is the most important aspect of hearing loss treatment. Babies who are diagnosed with deafness before six months of age have a chance for better speech-language development. Older children who have a risk of hearing loss should be screened regularly. The earlier treatment begins; the sooner children can reach their full potential.

Most deaf children lose their hearing due to infections, genetic conditions, injuries or noise exposure amongst other reasons. Doctors use various diagnostic tools to test hearing in children. They often use behavior techniques to determine the type and degree of impairment.

Medicine or surgery can treat some types of hearing loss. Other types are best treated with hearing aids and speech-language devices. Children with profound deafness may benefit from cochlear implants.

Hearing Loss and Bullying

Some people consider children with hearing loss to be different in some way. Hearing aids and cochlear implants add to this perception. According to a “Boston Globe” report, a Swedish study found that one in five deaf children are victims of bullying. Those who are bullied often suffer from low self-confidence and self-esteem.

It is important for parents and school systems to support and protect hearing impaired children. These children need to know that there is nothing wrong with them. While their deafness poses definite challenges, it also presents an opportunity to overcome the challenges and succeed in their efforts to reach their goals and dreams.

Influential Deaf People

Deaf children have hopes and dreams just like all children. It is not impossible to make those dreams a reality. Just ask Nick Hamilton and Marlee Matlin.

Nick Hamilton did not let his hearing loss get in the way of his baseball career. Deaf since the age of three, Hamilton has turned to surgeries and hearing aids to help him cope with his deafness. In college, he became a star baseball player for Kent State. He now plays ball for the Cleveland Indians. He wears hearing aids on and off the field.

Marlee Matlin was almost completely deaf before her second birthday. The award-winning actress never let her disability interfere with her acting career. With the support of her family, she overcame her hearing loss challenges to become a well-known, working actress. In 1986, she won an Academy Award for her role in “Children of a Lesser God.”

Hearing loss can be a tough situation to deal with, but with the love and support of family and friends and a little belief anything is possible.  Many people famous or not have taken it amongst themselves to beat hearing loss and have gone on to pursue their passions in life.  Don’t let hearing loss stop you!

Hi my name is John O’Connor, I am a father, outdoorsman, sports enthusiast and passionate about living a healthy lifestyle.  Check out my new blog at bloggingwjohno.blogspot.com!

Square Plates

Exactly what I want at Target!
Exactly what I want at Target!

Square plates. I WANT THEM.

Why are plates ROUND after all? Squares have such nice neat corners. It isn’t as if round plates hold more! Round plates are not any better at preventing food from escaping if you are an – erm – especially aggressive eater. Or, perhaps TWO-years-old!

I really want square plates. They are different. They accomplish the same purpose. Am I rebel? No, no… you see, my friends?

I’m a SQUARE. That’s right, you heard it first here at Hearing Elmo. (smile)

We May be the Same – But We’re NOT

I have met a lot of people with hearing loss and cochlear implants. We may all have hearing loss, but we are not the same. That is why our hearing aids and cochlear implants are programmed especially for our hearing health profile.

I have met many with Meniere’s disease. I may have the same diagnosis as you do of Meniere’s disease. That does not mean that we share the same triggers. It does not mean that what works to alleviate the severity of symptoms for YOU, will work the same for me.

Unfortunately, even though we may belong to the same community of people – those who live with some sort of invisible or chronic illness, those who are differently-abled, we forget that we are individuals. What works for one will not work as well for another.

There are three cochlear implant manufacturers. I love my cochlear implant. Neither I, nor my audiologist at Johns Hopkins, ever thought I would be hearing this well. My cochlear implant is not “better” than someone who chose another manufacturer, however. Consumers – the patients – have a responsibility to thoroughly investigate all the details about all of the brands available. We pick what we believe will work best for US.

Round plates and square plates do the same thing. They hold food. But some of us like round plates – and some of us are SQUARES.

It always grieves me when I see posts at various online support groups where one member bashes the ideas of another. Or perhaps they are insistent that everyone try their extremely low-salt diet (which happened on a Meniere’s group of which I am a member). It didn’t matter that several of us explained we had tried low sodium a number of times and had found it made little difference.

We need to respect other people’s choice to use round plates – or square ones. In the hearing loss community, our mantra should be “whatever works”. In groups that formed to support those living with Meniere’s disease, we should work on actually BEING supportive. If WE aren’t supportive of each other, how can we ever expect the community at large to be?

Are you a member of a support group for your own illness or disability? Encourage others to be supportive and open to new ideas. Everyone just might learn something! Regardless, we need the non-judgmental atmosphere of a friendly, empathetic community. Respect each other. Before you know it you just might start seeing :

by 10 Strawberry Street
by 10 Strawberry Street

… TRIANGLE dinner plates.

Denise Portis

© 2013 Personal Hearing Loss Journal

 

 

 

 

Reverse Discrimination

Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA
Kyersten and Chloe at the “Candle Barn” in Bird-in-Hand, PA

Discrimination. Pronounced, the word even “sounds” ugly. According to the United States E.E.O.C, discrimination can fall into the following cateogries: age, disability, equal pay/compensation, genetic information, national origin, pregnancy, race/color, religion, retaliation, sex, and sexual harassment (U.S. EEOC, 2013).

For those of us with any kind of disability, the Office of Civil Rights enforces Section 504 of the Rehabilitation Act of 1973, Section 408 of the Rehabilitation Act of 1973, and Title II of the Americans with Disabilities Act of 1990. As I mitigate my own disabilities with a service dog, I was thrilled to see the ADA clarify specifics for folks like myself (See ADA 2010 Revised Requirements).

One of the more troubling truths about discrimination, however, is how quickly the “tables can turn”. Those who are often discriminated against can very easily become those who discriminate. It sneaks up on you.

Teaching the Teacher

The photo above is of my daughter, age twenty-three, and taken at one of our favorite “day trip” areas. Bird-in-Hand, Pennsylvania, is a quaint little village in Lancaster county that makes you feel as if you’ve stepped back in time. Kyersten is a young adult now and I’m pleased we are friends. She has taught me many things through the years as she usually presents tough topics with the poise and thoughtfulness someone twice her age would do.

I always welcome one-on-one talks with her, but in early 2010 I initially was NOT pleased when she informed me that I was discriminatory towards people who had normal hearing.

I sputtered, “Wha…?”

Like she tends to do she began to systematically present the proof. “For one thing, when you are exasperated with a communication problem, you call us ‘hearing people’. Makes me feel like a different species!”

She continued her argument by explaining that I often forget that people without disabilities can be just as big a champion for folks with disabilities as the individual themselves. This may be especially true of those who care for someone with disabilities.

Later, a discussion with my husband had me really feeling sheepish about my own apparent hypocrisy. “It’s perfectly natural to seek out people who struggle with the same things you do, but when is the last time you befriended someone without disabilities? You have OTHER things in common with people. For example, your faith, your background, and your profession… all put you in specific environments where you can get to know people and enjoy the reciprocal benefits of friendship.”

OUCH.

“License to Kill”

To “self-identify” is a topic discussed in many forums. Many believe that to do so goes hand-in-hand with acceptance and self-respect. One of my favorite “women of courage” buddies is a young woman by the name of Hunter. She and I both received our assistance dogs from Fidos For Freedom, Inc. Hunter was the first person I heard use the term “differently abled” instead of disabled.

I totally “get” choosing a more positive spin on a word many of us hate at times. However, I’ve also learned that because this is STILL the way the law identifies us (and protects us), I’m OK with being a person with disabilities. (Though like Hunter, I will quickly point out exactly how I simply do things differently…)

Labels – even those we pin on ourselves – can go SO WRONG, however. Once we start behaving as if our status “sets us apart” and in some way elevates us over another, we’ve really lost our purpose. Our goal is equality after all, correct? Many blogs I follow written by people with disabilities or who live with invisible illness, simply want to be accepted and treated normally.

I’m disabled and YOU are not… therefore I’m entitled to this, and This, and THIS. Obviously, a person who does this has missed the point. Yet, just as we may inadvertently reverse discriminate against those who live WITHOUT disability or invisible illness, we may choose to wear our “badge” as if it gives us free reign to disrespect others.

Guard your Tongue

Are you a person with a disability? Do you live with invisible illness? Does a chronic medical condition shape who you are? Do you have a service animal?

YOU are a person of influence.

Recently, I went to get a new contact prescription. I’m having to do so every 4-6 months unfortunately. As a result, I’m getting to know my eye care professional very well. At my last appointment with her encouragement for me to “see a specialist” ringing in my ears, she rolled her chair closer to me and said, “Can I share something with you?”

Immediately wary of the WAY she said it, I hesitated but said, “Sure! What’s up?”

She shared, “Until I started seeing you, I hated knowing a hard-of-hearing patient was waiting for me in the examination room. In the past, hard-of-hearing patients seem to be defensive, argumentative, and easily frustrated. I understand it can be hard to look through corrective lens with the Phoroptor as it means you cannot see my face to hear, but you are the first to not act as if it is my fault”.

I was stunned. I’ve always used humor to try and alleviate any discomfort others may feel as I enter an establishment with service dog and blinged-out cochlear implant. Yet later, I found myself wondering if I had ever treated someone poorly simply because I was frustrated.

Hopefully, my ability to laugh at my own fax pas and miscommunications will compensate for some of the bad experiences my optometrist had with people who have hearing loss. With regret, however, I could remember many times where I “blew it” and had a negative influence.

One rainy day, I entered a new building on another campus for a class and stopped at the security desk for directions. Before I could state the problem, the campus officer asked, “Why is that dog in here?”

Yeah. She could have stated it a little more diplomatically, but I became immediately defensive. I blurted out all the ADA information I knew about service dogs and then said with exasperation, “Where are the elevators for the classrooms above?” Several weeks later after classes were finally routine for me, I had to stop and apologize to her. I was out of line.

Every encounter you have with people at work, stores, places of business, and even church are an opportunity for you to be a GOOD influence. You set the stage for future encounters for these folks. We can be a good influence or a bad one. We shape future encounters for people just like us. Remembering that has helped me be a little more patient.

Bottom line, my point? Let’s practice what we preach…

Denise Portis

© 2013 Personal Hearing Loss Journal

United States Equal Employment Opportunity Commission (2013). Discrimination by type. Retrieved March 25, 2013, from http://www.eeoc.gov/laws/types/