Category: working dogs

Once Upon a Time…

Published on by hearingelmo4 Comments

Once upon a time, there was a young woman from a small farming community in the mid-West. She was healthy and strong. She loved music, “listening” (but mostly TALKING), and books. She went away to college and met a Southern boy. She had so many dreams! She met a “circle of 8” culturally Deaf friends in college and was welcomed into their small sub-culture on this tiny college campus. She learned sign language.

To her sorrow, she couldn’t have children, so she made big plans to go right into graduate school and eventually be in a place where she could help people. She told her husband, “Someday? I want to adopt some Deaf children”. He knew she had a heart for this culture with hearing loss and also knew she longed to be a mother. He supported her dreams.

Don’t you love “Once Upon a Time…” beginnings? My favorite books begin by transporting the reader back in time. “Time” may be a real time period, oozing with history and descriptions of bygone days. The setting may be in a make-believe time and place. Somehow, it still manages to wrap my mind and heart around the characters and story, despite the make-believe.

When I think of my own “once upon a time…”, I have to smile at my naivety and immaturity. NOT that I continue to be gullible and naive at times – even immature!  However, I find that I am forced to hide my “knowing smile” when I hear my 21-year-old daughter “dream aloud”, or my 20-year-old son outline his “life’s blueprint” for me. Life has a way of taking a person down paths that are only visible through the benefit of hindsight. Our story unfolds one day at a time. Decisions are made – some irreversible. We learn to live with consequences – both good and bad ones. We may “roll with the punches” and work hard to be refined like gold. Unplanned detours have a way of changing our direction in life. Our goals may change in order to accommodate our changed lives.

 

At the current age of 45, I look back upon my own “once upon a time…” story. I am late-deafened and have a balance disorder. I “hear again” with bionics and navigate life with a service dog. I have two children. I’m a teacher. I am still married to my college sweetheart. It has been over ten years since I have been able to visit my hometown in that small farming community. I am “mostly” shunned by the Deaf community as I chose a different life path. I am integrated and immersed in a new community of people with hearing loss and other disabilities that I did not know even existed. I actually love technology and even my books are now in an electronic library. I don’t listen to music – but I do listen. Better than most, in fact…

Chances are I have many chapters left in my story. Regardless of the number of pages, my heart’s desire is that I may make a difference – in even just one life. Occasionally, I hear from disgruntled readers who are exasperated at my viewpoint. “You don’t know what I live. You can’t understand how few opportunities I have now”. I gently remind them that whether they are using JAWS or Dragon software or are dictating to another, they have reached across miles to touch base with me. They have shared their ideas, frustrations, and heartaches. Others respond at times in frustration that they lack the support I have around me and cannot build a foundation for happiness in their own lives. I share with them some things I am unable to share in this venue – the people who have abandoned me and have turned their backs on my family and I. I remind them that every obstacle helps me to peel back layers of who I really am to reveal strengths that are hidden when “everything is perfect”.

No. Our lives are not the same. Where is the fun in that?

Hearing Elmo is actively soliciting other writers to contribute their own stories. In other words… I’m begging. GRIN! I prefer that 50% of the posts sheltered here be from people other than Linda Denise Portis. You can have a different viewpoint! Won’t you consider sharing your own “Once Upon A Time…”? You may not consider yourself a “good writer”. I’m not… and that hasn’t stopped me sharing my own thoughts and stories. I ask because I’m astonished at what kinds of things make a difference to another. We cannot know what others are going through and whether or not their own invisible disability or chronic illness forces them to reach out for help. Some are “pointed” to Hearing Elmo by others. However, most chance upon this “once upon a time…” venue. Won’t you consider sharing your story? It can be serious or fun. You can relay facts or express dreams. If you or someone you love lives with disability, chronic illness, or mitigates personal obstacles/disabilities with a service dog… Hearing Elmo would love to be your sounding board. Are you a trainer or health professional? I hope you will consider writing!

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Alone “On Purpose”

Published on by hearingelmo1 Comment

I recently “re-read” a terrific article by Arlene Romoff, fellow blogger and Hearing Loss Association of America member/leader. She detailed how to navigate the holidays with a hearing loss. (Her article can be viewed here).

I was reminded that these tips work well for most holiday situations, but not ALL. Are you ever invited to holiday gatherings that are not “family” or close friend centered activities? It can be quite difficult to navigate holiday gatherings that you are not in control of – or – that are attended by folks you may not know so well. My husband and I have been attending a terrific church for the past two months and are involved in a small group with similar aged people. A holiday gathering was discussed and planned. Sign-up for the activity began a couple of weeks ago. And you know? For the first time in my life with hearing loss, I explained when asked if I was coming that I’m would not be. I did not feel crushed by the guilt of being so anti-social afterwards!

Perhaps it is because I have learned in recent years that it is OK to be alone “on purpose” on occasion. Now don’t get me wrong! I’m all for relationships, communication, and forging/cementing friendships! I believe in “play time” and in working hard to participate in family and friend activities during the holiday so as to celebrate the season in all its glitter, glory, and historical significance.

I knew from paying attention in this small group at church that “sign up” would begin soon. So I embraced an opportune moment at home with my best friend and husband, Terry, to discuss the issue. I explained that I fully supported his going to “represent us” and that I know from understanding the dynamics and participators in this group… that not all attend with spouse or “significant other” for various reasons. I explained to him that I have chosen to not put myself in extremely unsettling and difficult situations. Sure… sometimes I have no choice. But in this? I did. I explained that the effort was almost debilitating and between fears of being jostled and trying to navigate and hear in an unfamiliar place – in a PARTY no less – well… I was just choosing literally NOT “to go there”. I could see him thinking about my comments and as he is very expressive, I could tell he was thinking back to various activities I had attempted in the past. He was very understanding. He agreed that should things like this come up and he desired to go, he would do so even without me. He knew I’d hound him for details later and appreciate participating vicariously.

It has been a couple of weeks now since that sign-up sheet went around in class. I still don’t feel guilty, but must be so use to that feeling I keep waiting for it to hit me! (GRIN) As it is, I simply think am finally OK with being alone “on purpose”.

Solitary Activities

I love to walk and hike. Thankfully my assistance dog, Chloe, never argues about being a walking buddy so I can depend on her ears and alerts to stay safe while doing something I enjoy. My preference is to walk alone… but I never say “no” to walking with my young adult daughter, Kyersten. However, when walking alone I actually hear better. No one to talk to you see, unless you count a very attentive hound dog. Because of this “lack of people” noise, I’m able to tune into what sounds are going on around me. I’m constantly amazed at what my cochlear implant will pick up – when no one is talking. The sound of crunching leaves, fussing squirrels, the wind blowing the now skeletal branches of the trees around me… autumn is noisy! I can hear traffic sounds both near and far, children on the playground, dogs barking at doors as we traverse the neighborhood, and cats glaring from windows in homes. OK, yeah… that last one was a bit over the top, but I certainly have “holes drilled into my back” by the glares of imperial felines who watch us pass their kingdom’s boundaries!

I love when my house empties out with various family members going to activities, movies, or different shifts at work. I work better in a quiet house. No one interrupts me and I get a lot of work done! When I don’t have work to do, I have learned to not only embrace solitary “down time”, I look forward to it! A hot cup of tea and a good book + turning off my ears “on purpose” = a type of sweet surrender to all that is good in being alone.

I participate in holiday activities and feel close to family and friends. Thanksgiving was at my house (but of course!) and we had company as well… but on my terms. No holiday music, activities were quieter ones, and I heard very well. The experience was not at all stressful. I’m learning, you see…

I DO get to know new people – but usually one-on-one. In large or even small group settings, my focus and concentration are on staying at a place I’m not “lost” in the conversation. That makes it pretty difficult to get to know others! But one-on-one meetings, lunches, or walks allow me to really discover new people. I’m quick to invite and accept the invitations for such outings!

Thankful for… the Internet

Perhaps a bit “off topic”, but as Thanksgiving was this past week, I don’t feel as if I can close this post without mentioning how thankful I am for the Internet. I know people think that you cannot have “real” friends through the Internet. However hearing loss can at times be almost isolating… and not by choice. I have discovered a network of very special friends – all who have hearing loss. I have peeled back layers of “them” to see reveal people who I am proud to call FRIEND. I have met them face-to-face in various locales… usually hearing loss related activities. I never hesitate to participate in groups – even large ones – with my peers. There is no frustration in asking for repeats at these conferences, conventions, and gatherings. I don’t mind folks invading my personal space, for it is always good EAR first. In super noisy environments, paper is always handy and darn if we don’t abbreviate and jot quick notes as good as the younger texting generation! If your batteries go dead, one need simply to remove their implant… scowl at it, and several people nearby will hand you batteries. It isn’t strange to ask hostess or waiters to turn the background music “off”, because no one in the group wants it on anyway. We finish each others sentences and clarify for each other when one voice, timbre, or pitch may not be heard as easily as another. We are comfortable with each other because we live the same kind of life. The Internet allows us to stay in touch “in between times”. For that I am grateful and mindful to acknowledge the power of connecting through this tool – the Internet.

If you are a person with hearing loss and have not yet learned it is fine to be alone “on purpose”, perhaps it is because you have not yet discovered solitary activities that you enjoy. I hope that you will learn to embrace these times. Take up a new activity that is done well as the result of your being alone. I know dynamite photographers, writers, and artists whose skills improved when they learned to embrace their own alone time. What hidden talents and skills have you not yet honed but could do so should you choose to be alone “on purpose”?

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Entitlement

Published on by hearingelmo3 Comments

When you think of “entitlement”, do you picture someone with their arms crossed and a demanding attitude? Do you associate  negative thoughts with the word? I have heard the word “entitlement” discussed at length in various groups lately. Parents may bemoan the fact that “kids today have a sense of entitlement that promotes a feeling of justification for all they do and all they DESERVE“. My husband and I even “shake our heads” at our own kids from time to time. Don’t get me wrong… our kids are TERRIFIC. They are well-adjusted, do not use drugs or drink alcohol, their language is acceptable, they make good grades, they are responsible and willingly reach out to others. But sometimes? Sometimes they act as if they deserve certain things even before earning the right to have that luxury, trust, or understanding. Thankfully, we can simply remind them about the blessings they have and use a comparison or two between their own lives and the lives of some of their peers and they are quick to apologize for their previous attitude.

Teachers  confess that students in classrooms across the country are morphing into groups of individuals who demand respect and favors they have not earned. Elayne Clift (2011) said, “Whether it’s rude behavior, lack of intellectual rigor, or both, we are all struggling with the same frightening decline in student performance and academic standards at institutions of higher learning (para. 6)… when teachers refuse to lower standards, those students seem to resort to a new code of conduct that includes acted-out rage, lack of respect, and blame”(para. 8). From what I understand, this attitude is reaching epidemic proportions in classrooms. Thankfully, I have not experienced this in my own classrooms yet. I do, however, believe it CAN be a problem and is certainly happening in many schools. Parents and caregivers may unintentionally (or with very real intent) foster and promote this attitude in their children.

What about “Occupy… ” a city near you movement? I’ve listened to some of my peers argue that those camping out and “occupying” locations in cities across America, are individuals trying to make a point about those in power and wealth, yet harbor a sense of entitlement.

I’m not here to debate any of these issues. Instead, I wanted to point out that a sense of entitlement is alive and well in the disABILITY community. I support being a positive advocate and for educating individuals as to what their rights are under the ADA. I’m not here to debate these issues, however, and recognize that there are plenty of examples of people with disabilities being misrepresented, mistreated, and unfairly judged.

What is ENTITLEMENT?

Webster’s defines “entitlement” as:

1. a : the state or condition of being entitled : right b : a right to benefits specified especially by law or contract
2.: a government program providing benefits to members of a specified group; also : funds supporting or distributed by such a program
3.: belief that one is deserving of or entitled to certain privileges

When I first began losing my hearing at the age of 25-years-old, I knew next to nothing about hearing loss and how it can impact a life. I spent the first decade of progressive hearing loss learning about hearing loss in general. I sought support and information about how to better communicate and how to deal with the emotional consequences of an acquired disABILITY. When I developed Meniere’s disease as well, I challenged myself to learn all there is to know about a disease with no cure. As a result, I’ve learned what my own triggers are, what steps I can take to lesson the symptoms experienced, and reduce the severity of flare-ups. I’ve become an advocate for those with hearing loss… especially those who are late-deafened. I support and advocate on behalf of those who use service dogs to mitigate their disABILITY.

I’ve met PLENTY of folks who do the same. This does not mean, however, that I have not met people with hearing loss, Meniere’s disease (or other balance disorder), and people with service dogs who exhibit an attitude of entitlement. Many have taken laws that protect their rights and use them as a weapon of mass destruction. Instead of resting on the assurances these laws were meant to produce in the lives of individuals with disABILITIES, these laws are used to insist on more than what is deserved and intended. Don’t get me wrong! Companies and local and federal government should be compliant with specific criteria the ADA outlines and determines as provisions for equal access. A person with disability should be given any available means and technology at work so as to do their job in such a way they are on equal footing with another who does not have a disABILITY for promotions, raises, and opportunities. My “beef” with people with disABILITIES begins where folks insist everyone else in their life adjust their attitudes to satisfy their fragile egos.

Respect is earned…

Whether you have a disABILITY or NOT… respect is earned. We are not entitled to respect by our fellow man. Let’s face it. There are mean people out there… and mean people SUCK. But we as individuals who live with disABILITIES are going to get a whole lot further if we treat even mean people with – respect.

In the service dog industry mean people can “bring out the mean” in others. I’ve seen it happen time and again, and frankly? It’s happened to ME. Some wise-guy person in “charge” will barrel up into my personal space, put out a hand to physically stop me from entering an establishment with chest puffed out, hand on a hip and a look on their face as if to say, “over my DEAD, lifeless body“. My first reaction? “That can be arranged…”

Nothing gets my back up quicker than a cocky, insolent ignoramus who chooses to invade my personal space as well! Especially since the latter may mean I over-compensate and “fall down go boom“. I know my rights. I have copies of the law. I’ve been trained (thanks to Fidos For Freedom). But I have learned that fighting “fire with fire” only leaves me with singed body parts. Sure, I may gain access, but at what cost?

One of my favorite Bible verses is Proverbs 15:1. I just love Proverbs! You could read one verse a day… strive to learn and apply something from it and be busy a very long time… or close to three years since there are 915 verses to be exact, but I digress (grin). Proverbs 15:1 (ESV) says, “A soft answer turns away wrath, but a harsh word stirs up anger.” Pardon my grammar… but AIN’T THAT THE TRUTH? Nothing takes the “wind out of the sails” of an angry store associate quicker than to be gently confronted with the truth of the law. The law is on our side, after all. Some folks are “deaf” to the truth though and because of preconceived ideas will thumb their nose at the law and insist persons with service dogs STAY OUT. Even if you need to call the police to file a report and insist on your right of entry and service, staying poised and in control should be paramount. When we lose control, it only exacerbates the situation. Worse? It sets up the next person with a service dog to encounter this same store associate with an even BIGGER chip on their shoulder.

Tired of paying the same ticket price as person’s with normal hearing at a theater, only to hear VERY LITTLE? If you want to promote open captioning or rear-window captioning… do so with a positive attitude armed with information about who uses it, what the law says, etc. Marching up to a theater manager with both guns a-blazing… accomplishes very little. When theaters do provide these services and use this available technology, be sure to thank the management. I’ve heard some HoHearies say, “why should I? Folks with normal hearing don’t have to thank the management for being able to hear a movie they paid for!” But is that the point? We are trying to raise awareness and help companies like movie theaters to provide these things so that we all benefit. (Hearing Loop.org has a great article here). We need to earn their respect. Thanking management does a number of things:

1) it reminds them who we are… real people who enjoy attending things like movies.

2) it helps them keep the numbers in perspective… many people use and enjoy captions. These “thank you’s” equal number of tickets sold and helps them remember the big picture…

3) it helps them see we ARE appreciative… not demanding snobs or spoiled people with a sense of entitlement.

A great blog post by Shanna Bartlett Groves on this issue can be viewed here and here.

Are you trying to get your church on board with providing an induction loop for people who use hearing aids and cochlear implants? Is the task difficult because there are not very many this would effect… or perhaps there is ONLY you? You will have an attentive audience and lay the groundwork for actually achieving this freedom to hear in church if you handle it the right way. Do not march up to the deacon board with a self-righteous sense of entitlement. Should they care that ALL may hear and participate in church? Well duh – of course they should! But we need to ask in the right way… with the right attitude. Non-profits have more freedom to say “no”. However, we can help them understand what this may mean for those who utilize t-coils in a way that our churches are eager to spend that little bit of money necessary to put in a virtually hassle-free technology that allows us to hear. If you hurl accusations about their lack of “Christian love” and belittle and chastise them… you will only insure they begin to believe that people with disabilities are demanding folks with a sense of entitlement. You may even need to show them how much you care about this issue. Offer to head up fund-raising for this technology. For many smaller churches, funds may be very limited in what they can provide even if they WANT to do so. (Hearing Loop.org addresses this issue here). I have a friend in another part of the country that finally talked her church into purchasing an induction loop system. She then went straight to the local newspapers and pushed for a story to be done on what this small church was doing to provide equal access for those with hearing loss. Her church ended up getting a great deal of positive publicity… reminding all in the community what churches are suppose to be doing in the first place. (A great blog post by fellow HoHearie, Shanna Bartlett Groves can be viewed here).

Yes. I think knowing our rights and standing up for equality is important. It is the “how” that concerns me. Heaven forbid that the way I handle something negatively influence the NEXT person who has a specific life challenge! We influence the thinking of those in the general public as well…

Several weeks ago I was at Costco picking up bulk items that we insist on purchasing in case the world should end. The carts there are ginormous (hey… it’s a word!), if only to hold the huge packages of paper towels, toilet paper, and bottled water we purchase to save a little money. In the pharmacy section I was busy searching for generic antihistamine. An older couple noticed me, first by spotting Chloe and then by noticing the cochlear implant (after reading her vest). They sidled closer with genuine interest on their faces. The lady said, “That’s one of those bionic things that people use to hear better with, right?”

“Yes,” I replied with no small amusement. Noticing the hearing aids in the ears of the gentleman I added, “I have no regrets about getting one either!” I had to repeat this actually, for he didn’t hear me very well the first time! I started to share a little information about my own hearing loss when the man piped up and said, “Well if God wanted me to hear better than I do now, He wouldn’t have allowed me to lose my hearing.”

Now I could have gotten all feisty about someone questioning my own acceptance of what God has allowed in my life. I felt a little “twinge” even – to set this man straight. But I knew this would help very little where as a gentle response would accomplish much more in the long run. “Really? I look at my cochlear implant as using technology available that HE allowed as a blessing in this day and age in which we live!” The man looked confused as he had not heard me very well, but the woman said, “Honey never mind him. He can’t HEAR. You hear so much better than he does! Where did you get your implant?” … and with that I had the opportunity to plant a seed of hope and to share information that may one day provide better hearing for this (ornery) man. It is, after all, all in the attitude!

What is your attitude as a person with disABILITY? Do you at times behave as if you are entitled? Learn to gauge the reactions of those around you as you share what could be done to help you communicate more effectively. Ask for evaluations of how you handle these situations from people who are close to you. Respect is earned. May I never behave or respond in such a way that another person with disABILITY is judged at the onset to be a person with a sense of entitlement.

Denise Portis

© 2011 Personal Hearing Loss Journal

Clift, E. (March 27, 2011). From Students, a Misplaced Sense of Entitlement. The Chronicle of Higher Education. Retrieved November 14, 2011, from http://chronicle.com/article/Students-Should-Check-Their/126890/

Courage!

Published on by hearingelmo3 Comments

 

The Cowardly Lion from "The Wizard of Oz"

Cowardly Lion: Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the “ape” in apricot? What have they got that I ain’t got?
Dorothy, Scarecrow, Tin Woodsman: Courage!
Cowardly Lion: You can say that again!

cour·age

[kur-ij, kuhr-]

noun

the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

What Kind of People Have Courage?

Exactly what kind of people have courage? In my opinion, courage is not found in a specific “kind” of person, personality, gender, or culture. Courage can be found in the heart of any individual. Facing life develops courage in our hearts. I began thinking about courage this past week. I was waiting outside a classroom as I had arrived a bit early. I have no idea what kind of class was being held in room 406, but I heard the professor say, “When you think of someone who is courageous, who comes to mind?”

I couldn’t hear all the responses, but some that I did hear included:

men and women in the armed forces

parents

law enforcement officers

and firefighters.

As I sat leaning against the wall eavesdropping on the class discussion, I thought about how I would answer that question should anyone ever ask me.

“People with disABILITIES have courage”

Part of the reason I love Fidos For Freedom so much is that the clients, trainers, and volunteers have become like family to me. There are a number of disABILITIES present in people who are “family” at this organization. People who are “differently-abled”. Some of the clients are deaf (or Deaf), some have balance problems, chronic fatigue syndrome, fibromyalgia, chronic pain (from accidents or illness), CRPS, MS, and the list goes on. No matter the background or current health status of any one individual, one thing I see in the face of ALL is – COURAGE.

How can we be SO different and struggle with such a wide variety of challenges, and yet all have courage? Bill Tipton said, “Increasing your courage to take calculated risks can improve your general well-being and attitude in life. Learning to transform the negative reaction of fear of failure to a positive sensation of opportunity can enhance your chances for success. I believe people with disabilities, or perceived differences, get more opportunities to demonstrate and practice courageousness” (Global Dialogue Center, 2011)

I believe when a person takes a “calculated” risk and strives to improve their life, courage results. I have seen people work very hard to train assistance dogs. I have seen people work very hard to train to be matched with an assistance dog. Different people have different obstacles, but all push on… reaching for that goal of more independence. I’ve seen clients training who are in obvious pain. I have seen people work hard at taking risks and learning new ways of doing things so that they may safely and confidently handle a dog partner. This is courage.

How Does One Find Courage?

Jayne Leone said, “Related to the word courage are the words encourage and discourage. (In fact within the word courage is the word rage.) Think of the times we have encouraged ourselves or encouraged others. Now think of the times we have discouraged ourselves and discouraged others. There are many buzz words being used today — such as empowerment, challenged, support — used by many professionals, when in reality the operative word is courage, encourage or discourage. As we well know, many social institutions can encourage us or discourage us as disabled persons. They can help us be empowered, help us to maintain self-control, help us be self confident, help us gain courage. By discouraging us they can do the opposite” (Independent Living Institute, 1997).

I believe that courage isn’t an attribute one learns and then “ya got it“. I do believe that courage, though hard-earned and a difficult teacher, is practiced by choice on a daily basis. This is why we have “good days” and “bad days”. I think the key to having an abundant life is to have more “good days” than “bad days”, but allow “bad days” to act as a learning experience as well. Let’s face it. We are going to have bad days. Don’t you think the key is in how one RESPONDS to a bad day? Courage doesn’t disappear on bad days. Courage doesn’t guarantee success.

Sometimes? Courage is going to bed after a “bad day”, with resolve to try again tomorrow. Courage means you simply refuse to accept defeat.

The Lion now walked to the Throne Room and knocked at the door.

“Come in,” said Oz.

“I have come for my courage,” announced the Lion, entering the room.

“Very well,” answered the little man; “I will get it for you.”

He went to a cupboard and reaching up to a high shelf took down a square green bottle, the contents of which he poured into a green-gold dish, beautifully carved. Placing this before the Cowardly Lion, who sniffed at it as if he did not like it, the Wizard said:

“Drink.”

“What is it?” asked the Lion.

“Well,” answered Oz, “if it were inside of you, it would be courage. You know, of course, that courage is always inside one; so that this really cannot be called courage until you have swallowed it. Therefore I advise you to drink it as soon as possible.”

The Lion hesitated no longer, but drank till the dish was empty.

“How do you feel now?” asked Oz.

“Full of courage,” replied the Lion, who went joyfully back to his friends to tell them of his good fortune.

Swallow Courage

Ever get caught up in wishing things were different? Do you ever wish you were simply “normal”? (Who defines what is NORMAL, anyway?) I’m at various stages of accepting who I am today. Sometimes I have a clear vision of my “new normal” and seem to understand the “new me”. At other times though? I’ll be honest – I flounder. There is a part of me that wants to “fit in” and do things like “normal” people do.

Why do I have to find batteries so that I can continue hearing when my CI “dies”?

Why do I have to stand and sit slowly?

Why do I have to remove my hearing aid at times when the ear mold leaves a sore in my ear?

Why do I have to use my hands (or Chloe) on the stairs to safely navigate “UP”?

One must “swallow” courage – to believe!

My husband reminded me the other day that even people without disABILITIES struggle with acceptance. As a psychologist, he has seen folks from all walks of life struggle with accepting the way things are TODAY. Age may have made a change in your “normal”. An accident, illness or disABILITY may have changed your “normal”. He said, ““You have differences that make you uniquely you, but that also require some assistance. Without Chloe you’d fall more and miss more. Without your implant you are deaf. You need to accept who you are without apology and stop looking to be treated normally”.

Courage ≠ Never Being Afraid

“But how about my courage?” asked the Lion anxiously.

“You have plenty of courage, I am sure,” answered Oz. “All you need is confidence in yourself. There is no living thing that is not afraid when it faces danger. True courage is in facing danger when you are afraid, and that kind of courage you have in plenty.”

“Perhaps I have, but I’m scared just the same,” said the Lion. “I shall really be very unhappy unless you give me the sort of courage that makes one forget he is afraid.”

You can have courage and still feel fear. The unknown can be a scary thing. When an acquired disABILITY occurs in the life of a person, there are no guarantees things will not get worse. Many have progressive symptoms. Courage does give us the ability to deal with change, however. Few are born with courage. It is a learned skill, an acquired characteristic.

The Cowardly Lion has always been a favorite of mine in “The Wizard of Oz”. I loved both the movie and the books. I smile when he uses his tail to wipe his self-pitying tears away. I grin when he “shakes” in fear of the Wicked Witch and trembles at the sight of the flying monkeys. I know the end of the story. The Cowardly Lion shows courage time and again throughout the movie, putting himself at risk for others and to achieve his own ultimate goal… a gift bestowed from the Wizard – that of courage. Unbeknownst to the Cowardly Lion, courage lay dormant in his fearful heart. He only had to exercise what was already there.

I hope that YOU believe that courage is in your heart. You may not even recognize it. If you take risks and live life “in spite of”? You have courage!

Denise Portis

© Personal Hearing Loss Journal

http://globaldialoguecenter.blogs.com/disabilities/2011/05/courage-enabler-for-people-with-disabilities-or-perceived-differences.html

http://www.independentliving.org/docs5/Leone97.html


 

Reflections on National Invisible Illness Awareness Week

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According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FAST – ever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal

30 Things

Published on by hearingelmo1 Comment

From Invisible Illness Week

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is:

Invisible if I want it to be, but I wear bling and use a service dog so that it is not.
2. I was diagnosed with it in the year:

1993
3. But I had symptoms since:
I was 6 years old after a car accident.

4. The biggest adjustment I’ve had to make is:
Learning to hear with a cochlear implant and learning how to adjust on days my Meniere’s disease symptoms have me wobbling around with poor balance.

5. Most people assume:
My cochlear implant has “fixed me”.

6. The hardest part about mornings are:
Not being able to hit “snooze” on my alarm clock since that happens to be my service dog, Chloe. When the alarm goes off, she kisses me awake and there is no going back to sleep. The dog is definitely a “morning dog”.

7. My favorite medical TV show is:
Not really a medical show but I do like Dr. Phil. He’s a “reality therapist” and I think everyone who has an invisible illness needs to have a healthy dose of reality!

8. A gadget I couldn’t live without is:
FM Clipboard for classes.

9. The hardest part about nights are:
Trying to ignore the tinnitus that comes roaring into play after removing my cochlear implant.

10. Each day I take __ pills & vitamins. (No comments, please)
1 prescription (blood pressure) and 9 different vitamins – one of which is Manganese. Studies have shown that people with Meniere’s disease may have a Manganese deficiency.

11. Regarding alternative treatments I:
Have tried numerous ones including acupuncture, chiropractor, and vitamins.

12. If I had to choose between an invisible illness or visible I would choose:
Visible – no question. This is why I try to make my invisible illness – VISIBLE.

13. Regarding working and career:
I am proud that I am able to work having made a number of adjustments and having chosen to be partnered with an assistance dog.

14. People would be surprised to know:
That I dread group activities because I don’t hear as well as they think I do.

15. The hardest thing to accept about my new reality has been:
That I must sometimes choose not to do things I once enjoyed because of my symptoms. For example: If there is a movie I wanted to see that is coming out, but the weather is bad and my Meniere’s disease has flared up, I cannot go and have to put it off.

16. Something I never thought I could do with my illness that I did was:
Go back to school and finish my MS.

17. The commercials about my illness:
There are none. I’ve never seen a late-deafened/cochlear implant commercial, nor a commercial about Meniere’s disease.

18. Something I really miss doing since I was diagnosed is:
Listening to music.

19. It was really hard to have to give up:
Friends who couldn’t cope with the new me accompanied by a service dog.

20. A new hobby I have taken up since my diagnosis is:
Blogging/writing

21. If I could have one day of feeling normal again I would:
Go to an amusement park and ride every roller coaster there!

22. My illness has taught me:
That the disability community is live and well and fully utilize the Internet to connect, support, share information and to be proactive.

23. Want to know a secret? One thing people say that gets under my skin is:
“Nevermind”. If you aren’t willing to repeat it for someone who hears differently are you not behaving as if it doesn’t matter to THEM?

24. But I love it when people:
Include me.

25. My favorite motto, scripture, quote that gets me through tough times is:
Helen Keller:  “Blindness separates us from things but deafness separates us from people. “

26. When someone is diagnosed I’d like to tell them:
Email me. Ask questions. I want to help!

27. Something that has surprised me about living with an illness is:
How family members who once knew you “when” are not willing to learn about the new you.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Email me and ask how I was doing.

29. I’m involved with Invisible Illness Week because:
Many illnesses and disabilities are invisible. I want to raise awareness.

30. The fact that you read this list makes me feel:

Appreciative that you care enough to learn more!

Denise Portis

© 2011 Personal Hearing Loss Journal

Deep Breath – Start Fresh

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Invisible Awareness Week is September 12th – 18th this year. I love the theme of this year’s promotion. How often do we take a DEEP BREATH and START FRESH? Perhaps the better question is how often do we NEED to do these two things?

Invisible illness or disability definitely takes adjustment. However, just when we may feel as if we have adjusted to a new lifestyle something will happen to take us back to “ground zero”. It may be that your disability or illness is progressive. Or perhaps, your life has simply changed in such a way that living with your challenges requires a new plan. For example, my children are now adults. Even though they still live at home at 21 and 20-years of age, both are working and going to college. This means that they may LIVE here, but I don’t see them as often as I did when they were younger. That means I don’t have the assistance of people who hear as often as I once did.

Part of the reason I decided to train and be matched with a canine partner, was so that I would be independent of my family’s help. Chloe has been a big blessing and I am grateful for her work of being my EARS and to help me with balance-related tasks. For all that she does, however, there are things she cannot do for me. A couple of weeks ago I needed to make a doctor’s appointment. The voice on the other end of the line had a heavy accent. Chloe obviously cannot assist me in understanding a voice with a heavy accent. However, I have found that because my life changes have been gradual, I already had a plan in place for when no one was home to help me with a call that had a heavily accented voice.

Are you a person living with a chronic or invisible illness? Do you have an invisible (or visible) disability? Do a quick assessment of your life, coping mechanisms, and skills. Do you need to take a deep breath and start fresh?

If you are a person living with invisible illness, I encourage you to check out the site for Invisible Awareness Week. Perhaps you can help to spread the word! There are a great number of resources available at the website.

Denise Portis

© 2011 Personal Hearing Loss Journal

Sometimes? There’s Not a Great Solution…

Published on by hearingelmo2 Comments
Chloe doesn't know Spanish...

Sometimes? There is not a great solution available for positive advocacy.

This past Friday, my 21-year-old daughter asked me to go shopping with her. I’m always thrilled when she CHOOSES to spend time with me, so I agreed so long as it was the morning so that we could “beat the heat”. She agreed. She wanted to shop for new “under things” and I knew JCPenny was having a sale on these items. Kyersten, Chloe and I headed for Annapolis Mall to shop.

The bad thing about shopping in the “intimates” department is that there is not much room to maneuver. I was having some difficulty with my balance as well so I was just being extra careful about how much moving I had to do. Chloe does great even in confined spaces with the exception of that tail. I talk to her a great deal while we are out because it helps to keep her attention on me. Kyersten was busy looking at different styles available.  My main job was to offer the occasional opinion and situate Chloe so that her tail didn’t knock things off with her loving “wag”. Chloe may not understand all that I say to her, but she does know her name and will wag as if she is paying attention to everything else I’m saying. Because my attention was on HER, and as we were in “tight quarters”, I was taken by surprise by two little girls who ran up and threw their arms around Chloe’s neck.

One little girl was about 4-years-old, and the other (obviously big sister) was probably 9 or 10-years-old. I stuttered out, “Oh! I’m sorry. She’s a working dog and cannot be petted right now”. The girls continued to squeeze and talk excitedly.

I tried to tune in a bit better and realized they were talking in Spanish. With my heart plummeting to my stomach, I held up my hand and shook my head NO saying, “Please don’t pet her. She is a working dog”.

The older girl stopped and tried to talk to me in English, and I understood “She’s a pretty dog”. At this point Chloe broke her sit/stay in order to break the choke hold. I was unprepared and went to my knees and caught myself on a rack.

With bras, panties, and tiny hangers attached to various body parts, I again held up my hand, shook my head no and said, “No please!” in a very firm voice. As I was still wobbling, I sat on my caboose to get my bearings.

The older girl said, “Oh … sorry” with some other words that I could not make out because of the accent. I did understand that she understood that Chloe was NOT to be petted. In Spanish she (I think) explained to her younger sister about Chloe. I think she realized something was amiss because I was now sitting on the floor with lingerie scattered around me. She left quickly with her little sister in tow.

I had Chloe brace so that I could get up, and asked my daughter to pick up some scattered articles. (Chloe could have, but I didn’t figure anyone else would want dog saliva on merchandise). Right as I was on one knee about to stand, the youngest came zooming around the corner with a squeal to squeeze Chloe again (who was now in a stand/stay and “brace”). I held up my hand and intercepted the young lady and my hand blocked her at the chest. Although I did not PUSH, it did stop her in her tracks. I said firmly with a head shake, “NO!” She turned and ran away.

I did NOT want to place my hands on someone else – let alone a child. I didn’t injure her, but I really felt out of options. I was “rattled” the remainder of the day. I was very upset with MYSELF that the resolution to this problem ended up playing out like it did.

When All Else Fails… Be Firm

I did look around for the youngster and never did see her or her older sister during the remainder of our shopping trip. When something doesn’t go according to plan I tend to beat myself up about it I’m afraid! I kept thinking about other options I may have had, and tried to think of what I might do should this happen again. (I’m open to suggestions – grin).

Sometimes we can try to advocate in a positive way – and the situation may just fall apart. Sometimes? You just have to be firm and resolute. We should always try to be positive and upbeat at the beginning…

“It would assist me in staff meetings if everyone would just pop a hand up before speaking so I can locate who is talking”.

“I can easily do my share of answering the phone if I had access to a captioned telephone that would provide understanding for when I don’t hear everything”.

“She’s not a pet. She’s a service dog and she can come into the store with me”.

Yet there are times we may have exhausted other options and have to stand firm.

“I need everyone to simply pop your hand up with a small wave before you speak. Thanks in advance”.

“I will require a captioned telephone so that I can do my job and share the task of answering the phone”.

“Here is a flier about what the ADA says about my rights. I’ll be over there shopping should you have any additional questions”.

I don’t think ANY of us welcome having to be firm and insistent, but there is a time and place for being firm. I try to always remember that there will be others who come after me that may also have accessibility issues. How I handle a situation may condition someone with normal hearing to respond to the next person they interact with who has a disability. There are times, however, when all pleasant and positive avenues have been closed to you. Even in your firmness… keep your cool. Keep it short and stick to the facts. My husband grins and tells me, “Denise! TMI. Keep it short! They don’t care about your background or care to hear your story”!

Accents, Foreign Languages, and Hearing Loss

The great thing about our country is the diversity. Because of where I live there are a large number of minority populations who speak English as their SECOND language. I do not speak an oral foreign language so I’m a little jealous of those who can! My mother taught high school Spanish for over twenty years, but her children never learned (much to her dismay). I have a lot of respect for people who speak English as their 2nd language. It is difficult, however, to understand language when an accent distorts the way a cochlear implant and/or hearing aid pick up the words. I have trouble understanding people with thick accents that may speak PERFECT English. I even have problems with American accents such as folks from Boston, Texas, etc. (I understand “Southern” as I lived there for so long!)

However, the fact that I have difficulty with accents, is MY problem. People with hearing loss should have patience with those who speak other languages as their primary language. I have heard late-deafened folks demean and criticize those who speak other languages. I always think to myself, “Really?” It is far more productive to explain that you have a hearing loss and have trouble understanding when an accent is present. Let them know that you are aware it is your problem, and pleasantly ask if they can perhaps speak slower and face you when they speak. I’ve overheard HoHearies blast people with heavy accents – as if it is THEIR fault! Always – ALWAYS – remember you are an advocate for others with hearing loss whether you signed up for it or not! If you are negative, critical and defensive, you are having a negative influence on how the rest of us are treated in the future. Yes, it can be frustrating and even embarrassing to have to ask someone with a heavy accent to repeat themselves again and again. But “own” the problem as yours – it isn’t their problem. It’s a big thing to be fluent in more than one language, so treat them with the respect they deserve.

Denise Portis

© 2011 Personal Hearing Loss Journal

Get Their Attention

Published on by hearingelmo2 Comments

I recently attended the annual national convention of the Hearing Loss Association of America because it was actually held in my area this year. At one point, I was in the crowded convention hall perusing the numerous hearing loss vendors and booths. At a distance, I saw an old acquaintance scoot by in their scooter. I tried to wave them down but I was not in their peripheral so they did not see me. After they quickly rolled out of my sight, it hit me! I could have raised my voice and said, “Hey Bob!” This friend did not have a hearing loss, but attended these conventions alongside of his wife who WAS deaf and hearing again with two cochlear implants. I had to smile at my mistake, because I forget that people with normal hearing do not have to have a visual cue in order to get their attention. (Thankfully we ran into each other later…)

I see this all the time in my kids. Kyersten and Chris (now 21 and 20-years-old) attend college but live at home. They really have no memories of my not having a hearing loss. Even though I had a progressive loss, it took twelve years before my hearing was completely gone. They have both told me that they don’t remember my ever hearing well. They are so accustomed to speaking with someone who has a hearing loss, they automatically do things that are more difficult for someone who isn’t in constant contact with someone who is deaf. They always come into the same room that I am in, and rarely try to have a conversation from another room with ANY family member… even those with normal hearing. Recently my son came all the way into the family room to ask my husband a question. It was a simple question that could have easily been asked from the kitchen. The television wasn’t on, and the area was fairly quiet. However, he is so accustomed to facing the person he is talking to, it is difficult to remember that he can do some communicating from another room when it comes to his dad. My daughter is often told that even as shy as she is, she has “uncanny eye contact” when communicating with someone.

Teaching Them Early

When my kids were about 2-3 years old, they were already “old hats” at communicating with a person who had hearing loss. They cannot remember watching television without captions. Even “Barney, the Dinosaur” had captions, as did “Sesame Street” and “Thomas the Tank Engine”. I believe it helped them learn to read as early as they did!

If I needed to tell my kids something, I would walk over to them and get down on their level. I would put my hands on each side of their face and say, “I’ve got my GUESS WHAT FACE ON!” I’d then (almost nose to nose) tell them what I wanted to tell them, or simply say “I love you”.

If they came to talk to me, I could hear that they were talking, but not understand what they were saying. So I’d lean down and put my palms on each side of their face and ask, “Wow! Do you have your GUESS WHAT FACE ON?” It didn’t take long for them to begin putting their own palms on the sides of my face when talking to me.  As they grew older, we dropped putting our hands on the face of the other, but they would come and tell me with direct eye contact…  “Mom, I’ve got my GUESS WHAT FACE ON…” and then tell me what they were going to say.

By the time my kids were 5 and 6-years-old, it had become habit. I was eventually able to afford a refurbished hearing aid that gave me some help in hearing for several years. I recall my daughter (from the next room) telling my son, “Wait a minute. Let me put my GUESS WHAT FACE ON and ask Mom!” As they continued to age and mature, what “stuck” was direct eye contact and face-to-face conversations. It was actually a wonderful gift to help nurture in them, for all of us do very well to give the other person the attention they need and deserve when communicating. No competing with electronic games, closed captioning on television, or computers when we talk. We put everything down and LOOK at the other person.

How to Get a Deaf Person’s Attention

Here are some great tips in how to get the attention of a person with hearing loss.

1. Wave your hand in their line of sight.

2. Touch their shoulder or hand before speaking.

3. Move into their line of sight with your body to gain their attention.

4. Turn the lights off and on (this is especially helpful in a room that may have more than one person with hearing loss and you need EVERY person’s attention).

5. If sitting at a table with the person, gently knock on the top to get their attention through vibrations.

Can you think of any others? I welcome your input!

How Service Dogs Get Attention

Hearing assistance dogs are taught to get their partner’s attention by gently bumping them with their nose or touching them with a paw. As I have a balance disorder, Chloe tries to garner my attention by standing and staring and WAGGING LIKE MAD. She only places a paw on me or bumps me with her nose if her 1st efforts have failed. Smaller assistance dogs, may get their partner’s attention by actually jumping up on them.

Even though hearing assistance dogs are trained how to get the attention of their partner to alert them to sounds, the human partner has to be responsible as well. Shortly after being matched with Chloe my trainer, Pat, took me to many different types of public places to train ME. Chloe was already trained. She drilled into me, two important things:

1. WATCH YOUR DOG

2. TRUST YOUR DOG

I quickly learned to pay attention to what has Chloe’s attention. Her hearing is not only much keener than my own, it is more sensitive than people with normal hearing. I can now even recognize when she hears something if she is standing in front of me (with my only seeing the back of her head). Chloe has a modified “heel”. “Heel” position is when the dog’s shoulders are parallel to their partner’s left leg. However, I do not have peripheral vision on my lower left. So we taught Chloe a modified “heel” that is slightly forward of a true “heel”. I had to learn how to observe the BACK of her head. Thankfully she has these wonderful hound ears that perk up and she “points with her nose” in the direction from which a sound is coming. She will even cock her head to the side to really tune in.

Look the neighbor came out...
Look at that family over there...
something is in the bushes...

If the sound is something she thinks I should hear, she’ll come and get me – phone ringing, door bell, someone calling my name, kitchen timer, etc. These are all trained alerts. However, I have been in situations where I could tell a sound had completely distracted her yet I could not hear or place what it was. When this happens, I ask “Chloe… what is it? Show me!”

Chloe will start to wag and TAKE me to what is making the sound. I have to be careful about this. I don’t want her to take me to every single sound she hears. She may hear the kid’s arguing and cock her head as she listens. I do NOT want her to take me to where they are arguing because they are old enough to work out their own problems! She seems to understand when it is a sound that I need to pay attention to – such as a cat locked in the laundry room, the low-battery sound on the phone in the bottom of my purse, or “Daddy” hollering from the bathroom because there isn’t any toilet paper!

A Word of Caution

I believe that individual’s with hearing loss should get the attention of every person they wish to speak to – even if that person has normal hearing. Do you know how many conversations I have interrupted because I walked up to someone and started talking without hearing that they were talking to someone else? I try to make it a habit (and still sometimes fail) to make sure I have the attention of someone before I begin speaking. This eliminates the likelihood of my talking over someone already talking.

I suspect all of us can improve our communication skills. If you have someone in your life who has a hearing loss, I encourage you to sit them down and ask them in what ways you may better communicate with them. If you have a hearing loss (whether a veteran of deafness or a “rookie” – new to coping with hearing loss), try to sit folks down and have a “heart to heart” about ways they might better communicate with you. This may include family members, co-workers, or even supervisors. Don’t think, however, that once you share with them how to better communicate with you that they will always do “right” from that point forward. I have learned that the people in my life need occasional (positive) reminders.

“Could you put your hand down please? You are covering your mouth”.

“Do you mind looking my direction when you speak?”

“Could you get my attention before you begin speaking? I’m afraid I missed all that you said prior to my looking up and seeing you standing there!”

Stay positive. Few people will put any genuine effort into communicating with you if you belly-ache and whine about it. If you get angry, it may cause resentment and defensiveness. Keep your cool! Smile… be positive! In the end, you are actually helping them better communicate with ALL!

Denise Portis

© 2011 Personal Hearing Loss Journal