Misconceptions

I’m always so tickled when one of Hearing Elmo’s guest writers offer to post something! This one was really “timely” for me and I needed the reminders about what some common misconceptions are! Thank you to Tywanna, one of Hearing Elmo’s guest writers!

MISCONCEPTIONS

Guest writer: Tywanna

The American Heritage Dictionary defines misconception as “A mistaken thought, idea, or notion; a misunderstanding.”

Prior to the decline of my hearing, I could not explain what it was like to live with a hearing loss. I was incapable of completely explaining something I’ve never experienced. If I had tried to do so, my words would have been awkward, confusing, incorrect, or ignorant.

I’ve cross across some people with “normal” hearing who feel as though they understand but their reality is often a misconception.

Here’s a list of the top misconceptions I’ve heard and experienced throughout my hearing loss journey.

1. All people with hearing loss use American Sign Language

According to Wikipedia, while there has been no reliable survey of the number of people who use ASL as their primary language, estimates range from 500,000 to 2 million in the United States. As of 2009, the United States population was estimated at $307 million people. If these statistics are close to the actual numbers, ASL users are in the minority.

In 2006, Gallaudet University published a study which indicated the estimates need updating.

2. Yelling will make the person with hearing loss hear better

Imagine speaking with someone and hearing but not fully understanding what’s being said. To a person with hearing loss this is a regular encounter. Sometimes we often nod, smile or shake our head out of politeness or because we don’t want to interrupt the speaker with “what” or “can you please repeat that.”

Sometimes when people with a hearing loss find the right moment to intervene with a polite “can you repeat that”, we’re faced with someone yelling so loud that their words become distorted.

I often feel compelled to ask, “will yelling make me hear or understand you?”

3. People with “normal” hearing may not talk with someone who has a hearing loss

A manager at work explained to me that she knows I’m smart but she was afraid people would not talk to me because I could not hear them. Is this the way my co-workers feel or the way she feels? I’m inclined to believe it’s the later due to her ignorance about hearing loss and her lack of being comfortable around someone who is slightly different than herself.

What does being smart have to do with hearing loss? How are the two related?

4. The word “impaired” sounds nicer than hearing loss or deaf

While taking an ASL class for the first time I used the word impaired with our instructor who was born deaf. She politely explained to me impaired means broken. After that experience I looked up the word in the dictionary. Impaired is a synonym for broken, ruined or messed up. Wow, did God make me broken? – of course not. He made me exactly the way he intended. He made me to be unique, different and one of a kind. Since finding out the true definition of the word impaired, I have eliminated the word from my vocabulary when referring to others with hearing loss or myself.

The terms dumb, mute, and handicapped and several others are no longer acceptable. Let’s band together to eliminate the words that may be offensive or degrading to certain members of the population.

Let’s ask people what they would prefer to be called and honor their wishes.

5. All people with hearing loss want to be “fixed”

Have you ever come across people who feel as though they have the answer to everything? Every time a new product or infomercial comes on television, they feel compelled to let you know.  “Oh my, I’ve seen this wonderful new head phone set that will enable you to watch television without using closed captions.” Well, I’m wearing a BTE hearing aid that costs $3000 and you’re telling me a product for $19.99 will enable me to understand the television?

“You’ll never guess what, “I’ve seen a new hearing aid that is suppose to fix all types of hearing loss.” Who told these people there is a cure for deafness?

Who also said deaf people want to be fixed? As a whole, the hearing loss and Deaf community are proud of who they are.

6. Deaf means “No Sound”

Wrong! The term deaf does not mean without sound. According to the Center for Disease Control, deaf is the inability to rely on your hearing to understand and process information without the use of visual cues.

7. Deaf people want sympathy

Recently while interacting with my supervisor at work, I explained to her I would prefer written instructions because I was going deaf. Her reply was “I’m sorry”. I quickly explained there is nothing to be sorry about. People who are Deaf, deaf or hard of hearing want empathy not sympathy. I don’t want people to pity me or feel sorry for me. That’s not the way I see myself. I’m using my hearing loss as a way to help others.

My cousin recently sent me an e-mail with the following quote:

“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”

–Rev. Dr. Martin Luther King, Jr.

People with “normal” hearing, may never be able to fully understand our journey. Often times true understanding comes from experience. We do not have to live in continued ignorance. There are so many libraries, books, television programs and Internet websites. Let’s educate people one at a time. Let’s band together to wipe out the misconceptions. Let’s continue to share our experiences to help others.

Something’s Missing…

My daughter was about 75% finished with this Thomas Kinkade puzzle when she realized she was missing a piece!

This past week, my daughter realized she was missing a piece of a puzzle. In spite of this, she stubbornly completed it. Her original intent was to frame the completed project, but after the missing piece was discovered she dejectedly took it apart and put it up. At least she didn’t let it get her too down… she went out and purchased a bigger, more colorful puzzle the next day!

Ever Feel Like Something is Missing?

We’ve had a tough month here in the Portis household. There have been some pretty major events that have taken its toll on us emotionally and physically. Terry has finally stopped having bad dreams at night, and my doctor is now  “on my case” as it ultimately disrupted my once regulated blood pressure. I was forced to make a medication change, and I see her again in two weeks. Basically this has NOT BEEN FUN.

When our children are little and something hurts them… chances are a “barbie doll band aid” or “spider man patch” was enough to make the “owwie” feel better. If their feelings were hurt, a simple pep talk and instructions to “shake hands and say you are sorry” sufficed. Having young adult children is no easy task. They are independent thinkers and for the most part make daily decisions with only occasional requests for advice from mom and dad. Kyersten will only be living at home full-time for another 8 months as she transfers to a 4-year college next August. Needless to say, I am “treasuring up” these days. Both of our kids work part-time and go to school full-time. They serve in our church and are busy. They are also old enough for life to hit them hard with tragedy and heart ache. As young adults, their “boo-boos” are more serious. It’s very difficult as parents seeing your child face their first “life changing challenge”. It won’t be their last, but it isn’t fun to witness the first and be helpless to intervene.

Perhaps because we’ve been experiencing some very real emotional duress, I have been “waiting for the other shoe to drop“. Have you ever felt that way? It may be that you’ve been through something difficult and even though things are looking up, you sense something bad is still going to happen. Perhaps it’s the result of living for a prolonged period of time under stress. I think we can get in the habit of feeling stress and pressure. Even when life begins to smooth out, we are in the habit of waking up tense. I can’t shake the feeling that something bad is going to happen again.

I wake up that way, and go to bed the same. This has affected even my tinnitus, balance and hearing! Stress and pressure only make acquired disabilities seem worse. Oh sure! This trial has brought me to my knees in a hurry. I believe in prayer and do not have to be coached to go to God when I need advice, comfort, healing, forgiveness or thankfulness. When tragedy strikes, I do have to remind myself… “GO PRAY”, because I’m often just trying to stay in one piece. S.O.S. prayers are harder for me… I guess because I’m already under stress and have little emotion or brain cells for doing something different.

Face toward Heaven... Chloe can set a good example

We just had a beautiful snow here in Maryland. We received 3-4 inches and it was the lovely, huge, fluffy flakes. Chloe and our family dog, Tyco, love the snow. Tyco loves it because he’s an Elkhound… a winter breed. Chloe loves it because it makes everything smell better. Being a hound-mix, she has a better sniffer… than even Tyco. Her muzzle, nose and floppy jowls were all made to collect and intensify scent. She can even smell a scent on the air and may taste and savor it by licking at the air with deep breaths and puffs! When snow is on the ground, smells are intensified, and she LOVES IT. She would spend hours in the yard if I could endure the cold that long.

Today in the yard, the dogs raced around the yard to play. While Tyco went to make his rounds along the perimeter of our fence, Chloe trotted around the yard, nose to the ground, sniffing and tracking all the wildlife scents left from critters in our yard from the early morning hours. She would trace many all the way to the fence and stop when she realized “it had gone over”. She would quickly pick up another scent, and race after it even if it sent her in circles, up and over tree stumps, or scrambling through the wintry bushes. Chloe was getting herself worked up over one scent trail, and I suspect it may have been something “bigger than normal” by the way she was snuffling, whining, and tracking. Eventually, she stopped her frenzied tracking and stopped short with limbs trembling and deep sighs. With the last bit of snow melting away between her footpads, Chloe turned her nose towards Heaven and stood in perfect stillness for almost 5 minutes. The only thing I could see moving was her nostrils and her ribcage. She even closed her eyes and enjoyed the scent of the air… of winter…

It struck me how poignantly clear her example was to me as her human partner. After a disappointing “hunt”, she was still able to enjoy what she was good at… smelling the scents of the winter bouquet caught up in the chilly breeze around us. I realized that although our family has experienced something that will always “show” as a heart scar in our lives, I cannot forget that life is usually VERY GOOD. I had to take a minute and point my own nose towards Heaven to express “thanks” for life and the blessings I have.

Get on Livin’ it!

Don’t allow yourself to look at life’s stresses and tragedy as the “norm”. To easily we embrace what we feel is our “lot” or what we deserve. Bad things happen… and they happen to every person. Matthew 5:45: “For He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust.” Bad things happen to good people. (Bad things happen to bad people too, but they are usually more of a life consequence than a random occurrence!) Don’t anticipate that bad things are going to happen. Life is good.

ready to come in?

Denise Portis

© 2009 Hearing Loss Journal

The “Folly” of Allowing “Deaf” to Define You

Simba (My parent’s pooch!  He’s the smartest little thing and has made a great addition to their retired life in Florida!  He’s a Cock-a-Poo, and doesn’t look like ANY canine movie star!)

The Folly of Hollywood’s Influence

I love my mother.  Mom is one of my best friends.  But being a mom myself now, I can clearly see that my mother was extremely influenced by the canine stars she saw on television as she was growing up.  I can make this assumption with a great deal of confidence, based on the fact that she has had two “look-alike” dogs of her own through the years.  Prior to retiring to Florida, she talked my Dad into buying a boxer that bore an resemblance to “Pete” on “Little Rascals“.  I don’t see the resemblance.  After all, it is fairly obvious the circle around his eye was PAINTED on, and Mom’s boxer had no make-up whatsoever!  But “Pete” was in black & white!  So… who knows?

“Jingles” did not last very long as she was not a well-trained, super-star dog.  On the contrary, she was a rather destructive and ill-mannered dog.  She found a new home on a new farm with a family who had a little more patience.

Prior to “Jingles”, while I was still living at home on the ranch in Colorado, Mom talked Dad into buying a collie.  I guess Mom had a thing for “Lassie“.  I didn’t mind at all, as I thoroughly enjoyed watching not only the current “Lassie” series, but never missed a black and white re-run of the episodes Mom watched as a child.  Mom may have insisted on a pedigreed collie, but Dad insisted on the name.  “Jean’s Folly” was our … erm… COLLIE!  We called her “Folly” for short.  I wish I had a picture of Folly.  She was actually much prettier than Lassie!  She was the most beautiful collie I have EVER seen.

Living up to a Name

It turns out that Folly was aptly named.  It seemed she was incredibly stupid.  At least that is what we thought in the beginning…

In 1982, Folly was accidentally left outside when there were some stray dogs from neighboring ranches running around.  These dogs thought Folly was really beautiful too… at least that’s what I told myself because she ended up pregnant.  Folly was an outside dog; a different type of working dog than the one I have now.  Folly’s job was to keep the on-site livestock safe, keep coyotes from killing our cats, and made sure that snakes stayed out of the yard.  We didn’t interact with Folly as much as we should have.  Had we done so, we would have noticed that she was pregnant PRIOR to her having puppies.  It was at the birth of her puppies that I first began to suspect that Folly wasn’t as dumb as we first thought.  It was October, and we had our first snowfall on the ground.

Folly went under our picnic table which was next to the house, pulled out most of her own hair, and had puppies on the cold, hard ground.  (Pretty pitiful, huh?)  On the insistence of my three siblings and myself, we brought poor Folly and her puppies inside.  Their new make-shift quarters were under the rarely-used pool table downstairs in the game room.  Folly and the puppies did really well for a couple of weeks.

During those weeks, I had the opportunity to really get to know Folly better.  She would look at me with bright, inquisitive eyes, and watched everything I did with intelligence and attentiveness.  She loved for me to “visit” her under the table with she and her puppies.  (It’s fairly difficult for a teenage girl to fit under a pool table with a large collie and a litter of pups!  But I’m talented!)  I dutifully took her outside “when nature called”, and brought her back inside so that she could be with her puppies.  However, the cold snap lifted and the weather warmed up enough, that my Dad said Folly and her pups had to be moved to the barn.

I fixed one of the rooms in the barn up with plywood and bales of hay.  It was cozy and warm.  The first couple of days I locked Folly into the barn with the pups.  I think part of me was beginning to suspect something about Folly.  I started doing “tests” of my own to see if my “feeling” could produce enough evidence to allow me to verbalize my fears.

Not Dumb… Just Deaf

I would sneak up on Folly when she was asleep, and as long as I took the time to move slowly enough that no vibrations were caused by my boots on the ground, I was able to “scare the daylights out of her” 9 out of 10 times!  I would watch her looking out over the alfalfa field directly south of our home.  She seemed eager to continue her vigilance in keeping the coyotes away.  When I was ready to lock her back into the barn, I would call her… nearly screaming her name and she would continue her guard of the yard.  I found, however, that if I walked into her line of sight and called her name with a smile and a pat on my thigh… she would come running with the unadulterated joy of a dog when seeing someone in their family.

My conclusion?  Folly was deaf.  I mentioned it to my dad.  Dad is a quiet man who is at first pessimistic of others viewpoints until he acquires enough evidence to conclude that they may be right.  He would have made a great debater.  At supper several nights later, he announced in a matter-of-fact way that he thought Folly was deaf too.  To this day, I have no idea what kinds of “tests” he ran himself to come to that conclusion.

As we felt Folly was now comfortable in the barn with her puppies, we left the door open for her so that she could come and go as she pleased.  The puppies’ eyes were just beginning to open, and I couldn’t wait to get home from school each day to go visit them in the barn.  It’s a shame we didn’t leave that door open for the first time over a weekend.  I’m certain I would have noticed that the puppies were failing had I been able to spend more time with them.  But as it was, one evening a few days later, I went to visit them and found them all dead.  Every single one of them.  My parents were at work, so I called my grandfather on the phone in near hysterics.  He and my grandmother lived on the ranch a couple of miles east of us.  I don’t know that he completely understood what was wrong, but he certainly arrived quickly!

He determined that the puppies had not been fed.  He could tell that they hadn’t been cared for in a couple of days.  He asked me questions about what kind of mom Folly had been.  I explained to him how great she was with the puppies when inside the house, and that everything was fine when she was locked up in the barn with them.

My dad must have shared with him that she was deaf.  He concluded that if she couldn’t hear them she didn’t know they were hungry.  I was furious and shouted at both my grandfather and Folly.  How could she not know they needed fed? How could something so IMPORTANT escape her notice?  Did hearing the pups trigger true maternal love?  She couldn’t be deaf AND care for the puppies?  My grandfather insisted I was trying to make her out to be more than a dog.  Instincts only went so far.  Sometimes competing instincts were even more dangerous.  Folly’s instinct to be on guard of our yard and farm overrode her maternal instincts.  She was conditioned to SEE what needed done, not HEAR what needed done.  None of this made sense to me.  I’m ashamed to admit that all I felt for Folly after the day her puppies died was HATE.

To me, Folly was back to being “dumb”.  I looked at everything she did after that with the irrational thinking that mistakes she made were just plain stupid.  I conveniently seemed to forget that she was deaf – that she had a disability that for a DOG was almost catastrophic!  I ignored the impact her deafness would mean on how she was measured in value as a working dog on a ranch.  I ignored it all the way up until the day she walked right out in front of a pick-up truck she couldn’t hear, driven by a distraught neighbor who had no chance of stopping in time.

I grieved for Folly for a very long time.  Quiet, yet bitter tears drenched my pillow at night for several weeks.  I remember thinking, that of every bad thing that could possibly happen to someone or something, deafness had to be the equivalent to a death sentence.  It was for Folly’s puppies.  It was for Folly.

Life’s Little Ironies

My husband and I first began to realize I was losing my hearing when I was twenty-five years old.  My… ermm… puppies, were 2 months old and 13 months old.  I have probably thought about Folly every week since that first audiological appointment in 1991.

For me, my deafness does not define me.  It is simply who I am.  A cochlear implant does not negate my deafness.  Certainly, I am indeed “hearing again”, but it is not perfect hearing.  I will never have perfect hearing again this side of Heaven.

To “hear” and communicate well, I take advantage of the latest technology.  I try to eat right and get plenty of sleep.  I attend support groups with other late-deafened individuals.  When I can, I go to workshops and conferences for people with hearing loss in order to educate myself.  Folks?  I try really hard.  But at the end of the day, I’m still a deaf person!  Actually… at the end of the day when I take my cochlear implant off, I am literally a deaf person!  Smile!

And yet, I’m OK with that.  Learning to communicate differently has made communication BETTER for me.  I drop EVERYTHING to talk to people.  I look them in the eye; I process what they are saying.  I acknowledge when I’m not hearing well, nor understanding well.  There is nothing else on my mind when I talk to someone, other than what it is they are saying.  If anything else is on my mind, I immediately stop understanding.  I truly give people my undivided attention!

I realize that Folly was just a dog.  But I recognize the difference having a loving supportive family has meant.  I recognize that God has brought specific individuals, message boards, writers and speakers into my life to “grow me”.  I wish I had thought of ways that Folly could have lived her life in safety.  I wish I had not equated her disability with her intelligence.  It’s actually a surprise she lived as long as she did, when one considers the enormous number of dangerous possibilities for her demise on a working ranch.

I have thought of Folly more than I have any other dog I have ever owned.  It will likely surprise my family to even read this, for my thoughts were private up until now.  Perhaps I am finally coming to terms with what it means to have a disability and still have a productive and meaningful life.

I raised “puppies”, I teach wonderful, eager students, I have friends who are hearing and friends who are culturally Deaf.  I work hard to minister to a group of peers that are late-deafened.  My deafness does not “define” me.  My deafness is a blessing, and enriches my life.  I didn’t discover this quickly.  I had to become an “old dog” first!

Denise Portis

© 2008 Hearing Loss Journal

Deaf/Blind for a Day?

usakeller2.jpg Helen Keller with President Dwight D. Eisenhower

A friend of mine named Bob MacPherson (owner and moderator bhNews, a listserve to which I belong) posted the following article: Helen Keller

I have no idea where he found this, but he’s always been incredibly gifted at digging up interesting tidbits that no one else seems to know about. Even people without disabilities or physical challenges appreciate Helen Keller and her life. I remember reading books about Ms. Keller when I was in grade school back in the 70’s.

In the last couple of weeks, one of my classes was “Deaf for a Day“. Due to a few very negative reactions from students and their families, as well the counter reactions from my family and online friends who were looking forward to the assignment’s conclusion, I decided to not discuss the assignment in class this year. I chose to have them write about it instead, and I really look forward to reading what they “learned”. (Hey! I’m wise enough to note my own emotional limitations by which to handle topics that are painful for me!)

I suppose since this is still on my mind a great deal due to everything that happened, Bob’s article on Helen Keller got me to thinkin’…

“Hey! I should remove my cochlear implant and hearing aid… wear a blindfold… and be Deaf/Blind for the day! After all I have several very dear friends who have this combination of challenges!”

Well my husband put a quick stop to this idea. He has numerous emergency room bills from falls I take when I have full use of my sight. He wasn’t about to allow me to take away yet another sense. stick-in-mud.jpg(He can be a real stick in the mud! Kidding) It didn’t seem to matter that it’s been a full 6 months since I’ve been to the ER for an accident due to my poor balance!

I did find myself longing to experience a deaf/blind day as two of my dear friends live this every day. (I posted about them recently here). It is my opinion that the best way to understand how another lives, is to “walk in their shoes”.

As I often do, I digress. Wasn’t it incredible that being deaf AND blind, Helen Keller still learned to speak so well that her enunciation was perfect? Not even someone talking with her on the telephone could tell she was deaf/blind by listening to her voice! Helen Keller learned to SING? It’s an incredible skill and testimony of hours of practice and work to speak well when deaf/blind. But to sing as well? (Honestly, my jaw dropped open when I read this!) I am only “late-deafened”, and was a member of different choirs in high school and college. Think you’ll ever hear me sing now? Think again. When I sing I use my hands now, not daring to trust that I may possibly actually sing in tune with my voice. I do sing around the house sometimes, but it’s usually when I’m hooked up to my Sennheiser TR 820 listening to iTunes. I’m fairly confident that I’m not singing in tune, judging by the winces from my family and Chloe!

Helen Keller is a great example… I suppose in many ways a hero to me. She is the author of several books. I think it’s time I re-read them.

Denise Portis
©2008 Hearing Loss Diary