Category: invisible disability

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

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

“I See Him as a Friend”

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Hearing Elmo welcomes guest writers! (I figure you get tired of only hearing my point of view!) Today I welcome a distant cousin, Ted. Ted and I “met” on Facebook, connecting with family and friends in a way only Facebook seems able to do. It is great fun to talk to him because we grew up in the same small town, “middle of nowhere”, farming community. Ted works with a non-profit called “Aids – Out of Africa” (http://www.facebook.com/pages/AIDS-Out-of-Africa/109654919088134) and is also active in his community, helping to dispel myths about people with disabilities. How? By being their friend…

Hope to hear more from Ted in the future!

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When my cousin was asking for stories for the web site about disabilities I was a little confused.   But I walk around in a state of confusion anyway so it didn’t bother me.  I did however start thinking.  Disability is all around us every day.  Sure we recognize the Disabled Vet in the wheelchair or the blind with the service animal, but we miss many of the other truly disabled.  Disability comes to many in all forms.

Having been associated with the Veterans Hospital for the past 30 some years, I have become accustom seeing “Disabilities” and don’t stop to stare or wonder the why’s or what’s of this concentrated elite group of America’s often forgotten service men and women.  Some are missing arms or legs, some are blinded, some in wheelchairs.  But many have hidden  “Problems” that we don’t see.  They are legally blind but do not require a service animal or the typically white cane.  Some are deaf but with the miracles of new hearing devices are able to communicate without being obvious.  When I walk into the audiology clinic, the receptionist, Peggy, greets every patient looking directly at them, speaking clearly, just a touch of volume, and a little slower.  Suddenly I realize that she cares.  That means a lot.  And when scheduled for the optometry clinic the doctor personally called my home to reschedule an appointment because she was being transferred and wanted to personally follow up on a surgery.  I take that kind of service very serious.  I appreciate those who care to go that little extra distance.

Now for the purpose of this writing and the  personal note.  Charlie is a friend, I call him a friend because he always takes the time to come over and speak to my wife and I every Monday at the weekly auction we seem to always attend.  He jokes with us and tells us what has happened during the past week.  If Mary is not with me, he will ask about her and the same if I am not in attendance.  He pats me on the back and makes me happy.  I see him on occasion at different locations all over town.   He is the kind of friend that never complains about his personal problems.  If his personal transportation broke down, I would help him replace or repair as necessary.  However he has a disability that many shy away from.   Charlie is limited mentally.  His appearance also makes many uncomfortable.  His teeth were not taken care of but that is in a stage of repair now.  Most people see him as a nuisance or embarrassment.  I see him as a friend.  I have asked myself what is there about Charlie that makes me proud to be his friend?  It is because his “Disability” only exist in the minds of the “Normal” people around him.  Charlie is seen all over town because although he is not allowed to drive, rides his bike pulling a trailer, around to selected locations to do odd jobs.  He is at the auction because he helps load items for buyers for whatever “Tip” they might give him.  During the night he sometimes shows me how much money he has taken in from his work that night.  In his mind he is not “Disabled”.  He is however truly challenged.   He lives alone, and pays his rent.  He wears clean clothes, and is showered and shaved.  I cannot compare him to all the people that thinks the world owes them a living because he makes his own lemonade out of the lemons that nature has dealt him.

So as we walk past people at Wal-Mart, or set beside them on a bus, we don’t really understand the limits of their “Disabilities”….. Perhaps better yet we do not understand their unlimited  “Abilities”.  Maybe the person just needs a friend.  I don’t think the word “Disabilities” is a true description.  I think that the word Challenged is better.  But neither fits my friend Charlie for in his mind he is not challenged nor disabled,  he is making a living the only way he knows how.  If he receives a little help along the way, that’s great.  But he would rather be accepted as is, where is.  So when you are asked to repeat a statement because the person could not hear or more likely not understand you, don’t get angry or say, “Forget it” for they can’t forget.  Try to be more like Peggy, louder, slower and facing them.    If the vision impaired need a little assistance, offer to help.  Just a, “Need some help with that?”, can make a person’s day.   It might even make your day.  An older person might be struggling to reach an item off the shelve.  When you hand it to them, there is a moment where you feel like you have really done something great and you have.

Ted C. Burhenn.

When Family Can’t Forget

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For the sake of this post, I’m brave enough to admit my age. I’m 45-years-old. I remember thinking that 45 seemed really old when I saw my parents celebrate that birthday. Now that I’m 45 myself, it doesn’t seem very old at all. As a matter of fact, I spend a lot of my time wondering when I will grow up.

Are you who you were at 10-years-old? (Can you remember back that far?)

Are you who you were at 16-years-old?

How about 20-years-old? Are you the same person you were then?

I think about who I was at these *mile stone* birthdays and realize how much I’ve changed over the years. Oh sure, our personalities, quirks, and even some habits remained ingrained in our make-up even decades later. But something happens to an individual growing older.

Life.

And you know what? Life can be hard. Oh yes – I know! Life can be very good. However, in my own life the more positive changes in who I am, occurred as the result of crisis and difficulties. One of the more frustrating things about “growing up”, however, is that our families won’t let go of who we were.

Think about it for a second. I left home at the age of 18-years-old. Many of you did the same, or perhaps even younger. Our parents, siblings, and close relatives who sat in the same pew as we did at church and attended the same high school football games, very likely have had very little participation in your growing up since that time. That’s what leaving home is all about. We make our own lives, invest ourselves in our own families, make mistakes, and grow. All this happens with very little influence of the people that were ONCE a major influence!

It’s very frustrating to me, however, to not be seen as who I AM around my family as they think I’m still who I WAS. I wasn’t the best big sister in the world. Having dealt with a number of emotional issues in my late teens, I can admit I wasn’t the best daughter in the world either. Now that I’m 45-years-old I don’t get to see my family nearly as often as I prefer. I have seen my sister 5 times since 1986. I have seen my brothers one time in the last 9 years. We all live in different states – spread out all across the U.S. I am able to see my parents at least once a year. However, I haven’t seen my grandparents since 1999 – which grieves me to no end bein’ they had such a major influence on my life in my developmental years. (Colorado is a long way off from Maryland). I was getting a bit aggravated when family members would make comments about me – even in a teasing fashion -as if I’m still the same person that I was. But then it hit me! How could they know who I AM, since they have not been involved in my life on a daily basis for the last 2 decades? The answer to that is that – they cannot!

As a result of this “middle of the night” epiphany, I began to ease out of feeling frustrated at not being able to leave my past – in the past – around my family. Worse? Try evolving into a person with an acquired disability when your family can only remember you “disability free”. I feel for them! It can be very hard to understand exactly what it may mean for you to live life on a daily basis – different now- solely because of an invisible disability or acquired chronic illness. For my immediate family members the process was gradual and progressive. They would be unable to pinpoint a point in time when I began to be who I AM. But for other friends and family members it can be very difficult to understand who you are now that acquired disability or invisible illness has changed you.

A young woman with fibromyalgia said: “I guess, where i’m very frustrated today, is, i’m having a fibro flareup, no doubt due to stress, i work at a bank, and we’re getting audited tomorrow, so checking, double checking, to make sure everything is just right, and i am so tight, and sore today, and NO ONE gets it, to look at me,i might look tired, but they just assume i’m ok, well, i’m NOT. It’s one of those diseases that no one can see that you have it, they have no idea how much pain we’re in, and they just assume everything is ok, and they don’t understand why I’m being so quiet, and they think i’m mad, and it is not that, i just feel like dirt” (Dannape, 2011).

Invisible illness with invisible symptoms are difficult to explain or even complain about. You LOOK fine.

On a hearing loss forum, 16-year-old Xatego explained:  “How do I deal with my family who claim they completely understand my hearing loss? I appreciate the fact that they were supportive and gave some of their time to look after me. But it annoys me when they like to think that they understand my hearing loss and the implications it has on my day to day life. I basically have a 90% loss of hearing. For example, my parents question my need to have subtitles when I’m watching TV. They say if only I watch TV without subtitles, it would reduce my need for it. I explained to them why, they didn’t listen. My cousin and I are basically the odd ones out of our whole family. He has severe autism and behind his back he is labeled by other relatives as the “crazy” one. I wonder what they call me since they treat me like an idiot. One of them even asked me if I was ‘still’ deaf. My sister and my mother gets irritated when I ask them to repeat their words. I get so frustrated; it’s not like I like having to ask them to repeat what they’re saying continually. When they say they understand.. They don’t. If you don’t have a hearing loss you don’t understand the way it cuts you off from people” (Xatego, 2011).

It can be really hard to explain what life is like for you when you are only beginning to understand it yourself.

Trying to Leave your Past – in the Past

Have you ever lived with someone who was losing weight? Someone with a great deal of weight to lose has learned that in order to keep it off, weight loss should be gradual with numerous lifestyle changes. The people who live with you may not SEE a lot of weight dropping off of you. But if a friend or family member came to visit who has not seen you in a long time, they are astonished at how different you look! I think it is the same for family members who spend time with me that have not seen me in a really long time. They are taken aback by the cochlear implant, hearing aid, and assistance dog. They remember who I WAS.

Earlier I asked if you were the same person you were when you were 10, 16, and 20-years-old. As for me? I didn’t really like who I was at any of those ages. Did you make stupid mistakes when you were younger? Did you ever make a decision that left long-term consequences? Ever feel as if you are wearing “scars” as the result of some past experience? I think some of the most crucial, vulnerable moments are in the weeks, months and years immediately following a firm decision to be DIFFERENT. An alcoholic may remember the day and time of their last drink – even if it was decades ago. But they will be the first to tell you that family and friends hurt by their alcoholism had a hard time believing “this time” was for real.

The ex-con will tell you that when they made 180 degree turn and CHANGED, their skeptical family and friends had a hard time believing it was for real!

The drug addict who is now free from the poisons they once put into their body will tell you that family and friends who had “seen it all” – wait around waiting for the other shoe to drop! For a significant amount of time everyone’s expectation is that the person will go back to being who they WERE.

Why do we long for people we love to break bad habits, yet make it hard for them to really do so? Why do we believe they will only fail again? In spite of testimonies of people who have gone on to serve in their communities and churches, raise families of their own, and be contributing, POSITIVE influences in their homes and workplaces, we who knew them “when” expect more of the same. Shame on us! I have seen God use people who were once drug addicts, alcoholics, and criminals in ways He could never use people who look perfect.

At some point in time these changed people made a choice.

and they never turned back.

Victor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. God uses hardship to change us. But our biggest skeptics may be those who love us best. We may be misunderstood and even spurned. You may feel as if your family cannot let go of who you were. But I’ll never be that needy, selfish, emotional basket-case of young womanhood again. My trials have made me strong. Angela Barron McBride once said, “Full maturity is achieved by realizing that you have choices to make”. I made choices. You’ve made choices. Hopefully we are ALL continuing to reach towards what being mature is all about! For the Christian, it is becoming more like Christ. We’ll never “get there” – but our goal should be to become more like Him day by day.

Because I’m not who I was 2 decades ago, I long to be the kind of person who believes that people who hurt me years ago are not who they were either. That sister-in-law you couldn’t stand? Twenty years may have changed her into someone you can now not only like – but love. That brother who was in and out of rehab and managed to drag the family through the disaster of three failed marriages may not be who he was. At what point do we believe the BEST of people? If God can change ME, He can change anyone. I’m not perfect… and I have not “arrived”. But I do like who I am. I wouldn’t change a thing. The process was (and IS) painful, but worth who I see in the mirror each day.

Try not to be aggravated when family members have trouble letting go of who you were. Time will tell – and if you are lucky? You may live to hear one of them say, “You aren’t who you were… you’ve changed!”

Dannape (2011, April 27). Fibromyalgia General Discussion. Message posted to “The Pain No One Sees”. Retrieved May 25, 2011, from http://www.fibromyalgia-symptoms.org/forums/Fibromyalgia_General_Discussion/The_pain_no_one_sees/
Xatego (2011, April). Yahoo Answers: People with disabilities. Message posted to “How do I deal with my family who claim they completely understand my hearing loss?” Retrieved May 25, 2011, from http://answers.yahoo.com/question/index?qid=20110424135942AA52fMB

Denise Portis

© 2011 Personal Hearing Loss Journal

Soul Surfer

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My daughter was home for Easter weekend so the family enjoyed a rare night out to the movies. The movie “Soul Surfer” had been recommended to us so we chose to attend on Sunday afternoon. I was in a bit of a huff when I arrived due to some family conflict, missing the first part of the movie while I sat and fumed. (Yup… I definitely need to learn to fume a little quicker).

Once I started paying attention, however, I really enjoyed the movie. When you “hear again” with a cochlear implant, you really do have to make the concentrated effort to PAY ATTENTION as listening is no longer a passive exercise – rather an active effort. On occasion, I’m lucky to snag a movie we are attending that is open captioned. I do not have to focus with nearly the same concentrated effort when the movie is open captioned. As it was, I finally TUNED IN and really enjoyed the movie. I won’t spoil it for you in case you haven’t seen it, but basically a teenager learns to live life differently due to circumstances that were neither predicted nor expected. She learned that “in spite of” she can continue to make a difference in the lives of others… to touch souls.

Individuals with acquired disabilities of any kind have to do the same, don’t they? I mean the alternative is isolating yourself and giving up. That isn’t a life I’d wish on anyone. (Believe me I know, because I tried it for a short time!) It takes a lot of courage to persevere and learn to do some things differently when life throws you a curve ball. I’ve always been a lousy “catch”, so wouldn’t you know when my own disabilities took hold and changed my life that I was totally unprepared?

I was at a Fidos For Freedom training with my assistance dog one Saturday and a fellow client that I have come to know quite well wasn’t at all surprised by a blunt question. We had learned to be “straight” with each other early on because we discovered that by doing so we could learn from each other. She is a client who has been matched with a service dog trained to assist her with mobility tasks. Having experienced a recent “wet week” due to spring showers in our area, I asked her how she found the wherewithal to come to trainings after having a “bad week”. She has had to learn to do things differently because of her disability and must prepare well in advance when attending trainings that other people may be able to spontaneously decide to attend! She said, “I simply remember that by coming I have opportunities to encourage someone else. I don’t want to miss those opportunities so I get my butt out of bed!”

I’ve never met anyone that was not able to MAKE A DIFFERENCE in the life of another. I don’t care who you are or what your circumstances are. The only necessary ingredient to successfully touching the life of another is BEING WILLING. If you aren’t willing, it will never happen. People with acquired disabilities have learned to maximize technology. We have learned to perhaps do something DIFFERENTLY in order to accomplish a task. We have also learned when to cut ourselves some slack. People with acquired disabilities have learned to ask for help at times. We are malleable, persistent, and BRAVE. No worries. I’m not “tooting my own horn” here, I’m simply pointing out the obvious having met numerous people with acquired disabilities.

Surfing for Souls

There are numerous ways individuals can make a difference. My “short list” is below. Feel free to leave comments and add to this!

1. Join online support groups and be active in the group. Reach out to others who are perhaps struggling with a new acquired disability.

2. If possible, participate in local support groups or chapters that meet physically each month. Go prepared to learn, but look for opportunities to serve.

3. Be open and honest. Don’t hide the fact on your Facebook. Don’t make your disability invisible. Visibility allows others to see you active in your community, doing things others do without thought. Shopping, church, or GOING TO THE MOVIES are all activities we can still accomplish. Welcome questions and be prepared to be a positive advocate.

4. Have business-card sized cards available to give to people who stop to ask questions about the: Cochlear implant bling, service animal, hearing aids, wheel chair, walker or bright purple cane! In this way they can contact you at a later date and ask questions in a more controlled, confidential way. They may need the information for themselves, or for someone they care about who struggles with their own acquired disability.

5. Don’t apologize for being different. Celebrate it!

6. Advocate, advocate, advocate! When the support groups and organizations to which you belong do annual fundraisers, DEMOS, or community service appearances, do not hesitate to get involved and advocate! At times you will be called upon to write local or state government officials. Take the time to do this!

I remind myself as I encourage you to do the same. I need to be be aware on a DAILY basis. I can surf for souls to touch. I can make a difference!

Denise Portis

© 2011 Personal Hearing Loss Journal

Hypervigilance vs. Awareness

Published on by hearingelmo4 Comments
Where is she looking? What does she see?

Being “aware” is a natural state for me. I think anytime an individual loses one of their five senses, they learn to compensate by being more aware of things around them. When all five senses are working, input is sent to an individual’s brain about their environment, people around them, etc., to help them determine if any action should be taken. However, when a sense goes “missing” as the result of acquired disability, accident, or illness, individuals have to learn to compensate.

Now that I have Chloe (my hearing assistance/balance assist dog partner from Fidos For Freedom), I have changed from a hyper-vigilant state to simply being more aware of my surroundings. You see, now I depend on HER. If I’m watching my partner as I should, she hears and then sees things I often miss. I’ve learned to pay attention to her body language and cues, as well as visual focus and reactions to stimulus around us (such as a sudden, loud noise). Do you know my blood pressure has gone down since I’ve been matched with Chloe? Hypervigilance is a negative state of being.

Psychologists define hypervigilance as an enhanced state of sensory sensitivity coupled with an exaggerated intensity of behaviors in response to possible threats. Hypervigilance is often accompanied by a state of increased anxiety which can cause exhaustion. People who are hyper-vigilant often stay in an abnormal high state of arousal and respond to stimuli by constantly scanning and detecting possible threats. Individuals with PTSD (post-traumatic stress disorder) often exhibit hypervigilance. Why then would a person who loses a sense,  struggle with hypervigilance? I do not believe that people with acquired disabilities start out being hyper-vigilant. I think it evolves after an individual experiences something very negative as a result of having lost a sense. For example, I do not remember the exact day and time – but I do know that in June of 2003, I was shopping in a retail store and was stunned by the reality of how dangerous being deaf can be. I was scanning the shelves for items and a person evidently needed by. I didn’t hear the “excuse me” or whatever was offered to let me know I was in the way. The woman pushed passed me fast and I ended up flat on my face on the floor. I rolled over and looked around to see her standing there indignant (and not at all apologetic) demanding, “Why didn’t you move?”

“I’m sorry – I’m deaf”, I replied. She had the good grace to at least blush, pushed her cart and hurried away. I was so shook up that I left my cart where it stood, gathered my things, and left. I vowed from that day forward that I would do everything in my power to make my invisible disability more visible. I went through a fairly stressful number of months after the incident and became hyper-vigilant whenever I left the house. I stayed in a state of exhaustion because of it. Enough time went by that I eventually learned to relax a little and just work at picking up good awareness habits. I wear my hair up so that the technology I use is visible. In 2005, I was implanted with a cochlear implant that served to reduce my tension even more since I re-gained the ability to hear. After I was matched with Chloe, “being aware” became even easier. In training, an oft repeated phrase we hear is, “Trust your dog”. In the beginning it is very difficult to do because we are not accustomed to doing so. It takes practice to eventually instill the HABIT of trusting our dogs.

I got a lot of flack this last fall from extended family members for taking my dog to the hospital with me when my daughter had emergency surgery. My family members who do not live with me do not understand that Chloe isn’t a “crutch” – she’s a tool. I use Chloe to be more safe and more aware of my surroundings. My husband and I very rarely go someplace without Chloe. However, occasionally we do go to places where we leave Chloe at home for her safety. These places may include: ICU areas of a hospital, zoos (where animals may become agitated since they want to eat Chloe), or to places that may have guard dogs (such as jails, etc.). When we occasionally go to amusement parks, I do not ride fast rides because of my balance issues. However, someone with an assistance dog may determine that these places are not good for the dog to be either. You can’t exactly put a dog on a roller coaster! So when I happen to be without Chloe, my husband has noticed that I am startled more easily because I don’t have anything alerting me to things I miss on my own.

I do not take Chloe with me to stores, church, and restaurants when I’m visiting my parents. They do not welcome the attention she draws. It is their home and I respect their wishes. I’ve had folks tell me, “WE will be your ears and watch out for you. You don’t need Chloe”. However, when I’m counting on people to cue me it never actually happens. People ignore many sounds that are just background noise to them. I’ve noticed that my parents can be having a conversation and stop on the curb while I just step right out into the road, unaware that a car was coming because they blocked my view of that direction. I have to be much more careful. I’ve also noticed that as a result of having a balance disorder, I stumble more when Chloe is not with me. In throngs of people, individuals “bump”, “crowd”, and invade the space of people around them because they are in a hurry. When I have Chloe with me, people notice and take care to stay outside my immediate perimeter. I’m rarely jostled or bumped when Chloe is with me. As a result, I fall and stumble less.

So Chloe does reduce my anxiety and create a different kind of awareness. I’m aware of HER. I depend on her. Having said all of that, having an assistance dog is not for everyone. In some ways it is like having a really smart toddler around. She investigates things with her nose, and yet I don’t want her to put her nose on every thing we come across. So I have to remind her “head up, Chloe” and be aware of things at her eye level. For example, because it is Easter season, going to Wal-mart means I need to be aware of all of the stuffed bunnies and ducks often at her eye level. Stores put them there so a child will say, “Mommy? Can I have this?” Well Chloe would like them too! So I have to be aware of her at all times.

At Fidos For Freedom, teams do a “meet and greet” activity. I HATE THEM. This activity is very hard on the people there who have a hearing loss. The idea is that you put your dog in a safe place and then communicate with another person or a couple of different people in a group. When you have a hearing loss though, you have to see the person’s face if you are in a large, noisy room filled with other groups of people talking. So it is difficult to make sure Chloe stays “safe” and STAYS PUT while actually carrying on a conversation. The activity is one of those “necessary evils” we endure so that we know what to expect in public – in REAL life.

I have heard people with hearing loss bemoan how difficult it is to carry on conversations when there is a “hub bub” of chatter around them. Sure, I may have a special program on my cochlear implant to help eliminate background noise, but it is not perfect! It is hard to concentrate on the speaker! Add to that trying to make sure your partner is in a safe place, only adds to the stress level a bit. So although Chloe eliminates much of the stress in my life, it can add to it as well. I don’t know that there is a good solution for “group meet and greet” for a person with hearing loss also partnered with a dog. (I’m open to any ideas though – grin).

Ok? SO?

Today’s post comes as the result of an email I received last week. With the person’s permission, I asked to blog about her question. “How do I know if an assistance dog would help me? Is it more trouble than it is help?” These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:

1. Am I OK with the attention having an assistance dog draws to me in public?

2. Am I OK with people stopping me and asking what the dog does for me?

3. Am I OK with having to pack a “bag” to go anywhere in order to make sure I have the things needed to travel with a dog?

4. Am I OK with occasionally being confronted and denied access?

5. Am I OK with having to care for and groom a dog daily?

6. (Because of #5), am I OK with having to invest in stock in LINT ROLLERS?

These questions and more are important things to consider if you are thinking about getting an assistance dog.

For me, the #1 benefit is that I am more relaxed and at ease in my awareness. I no longer feel the need to be hyper-vigilant and I’ve learned to trust my dog.

Where Can I Get One?

Self-training or Hiring a Trainer:

Countless owners have “self-trained” their dogs to perform specific tasks. There are pro’s and con’s to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person with hearing loss. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in “puppy selection”.

Some links to get started:

http://www.dogpawsability.com/

http://sdog.danawheels.net/ot-adog.shtml

http://www.amazon.com/Teamwork-II-Training-Manual-Disabilities/dp/0965621618

Training Organizations:

There are numerous organizations from which a person can get a “program” trained dog. A list compiled by Assistance Dogs International, can be found at:

http://www.assistancedogsinternational.org/membersstatecountry.php

Another list can be found at: http://wolfpacks.com/products/servicedog/trainers.html

Many programs offer training and a dog at little to no cost, as they depend on the generosity of donors, sponsors, and volunteers. Others have ways in which you can help to raise money for the dog being trained for you.

Every state has similar requirements for a hearing assistance dog, but I always carry my ADI guide to Assistance Dog Laws. A copy can be obtained at: http://www.assistancedogsinternational.org/guidetodoglaws.php

Feel free to email me if you have additional questions!

Sincerely,

Denise Portis

© 2011 Personal Hearing Loss Journal

Disabled (Grimace)

Published on by hearingelmo7 Comments
Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

We Are All Ambassadors

Published on by hearingelmo3 Comments

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

On the Level

Published on by hearingelmo2 Comments

The “cheap” level I purchased this weekend.

We recently moved to reduce my husband’s daily commute from 3 hours to 10 minutes. In moving, things are often “lost”. A phrase often heard in our house lately has been “It’ll turn up!” Although cheerfully voiced and repeated with conviction, over the last 6 weeks there have been some items that have not turned up. One such item was the “level”. It was a really nice level too – approximately 18 inches long and very well made. I know that Home Depot advertises these digital gadgets that use an infra-red beam to determine – “level” – but I want something I can wrap my arms around and move around as if I need a hard hat and knowledge of construction! I have neither… but I like the illusion!

Anyway – I digress…

In the move, my husband and 20-year-old son put together a new T.V. stand for our 42-inch flat screen. The first time I sat down to watch a taped “favorite” I knew something was wrong.

“Umm… honey? The screen is crooked” I announced with confidence.

Terry did get up to stand in front of the T.V. with a critical eye, but explained with some assurance in tone and stance that, “It isn’t crooked. It’s fine!”

I gave him one of THOSE looks. You know the kind where you don’t actually SAY anything, but yet SAID a lot?

“Besides”, he teased, “how can YOU say whether or not anything is crooked or straight?”

“My world may revolve, but it isn’t skewed,” I retorted.

Over the next 3 weeks I continued to insist the screen was crooked. I watch very little television and what I watch is usually a taped show. When I sat to watch a taped cooking show or “Bones”, I didn’t want to have to turn my head to watch it “straight”. I was starting to let my frustration show that I seemed to be the only one who noticed the screen was crooked. Determined to prove my own “sense of level”, I went in search of our – erm – level.

It’s very frustrating to go through every nook and cranny of a new home looking for something you clearly remember packing and not finding the item! While picking up a few things at Wal-mart this weekend I got my husband’s attention as I headed for the hardware section. “I’m getting a cheap level,” I announced with NO ROOM for argument. He rolled his eyes but followed Chloe and I to the hardware department.

Ignorance is Bliss

When we got home, Terry and I unpacked the Wal-mart bags. I was busy in the kitchen when I caught sight of him in the family room standing in front of the T.V. He was putting the level on the television stand and then the T.V., all the while looking very thoughtful. I walked over to see if my sense of “level” could be trusted.

“It’s crooked,” he admitted with some surprise.

I tried very hard not to crow, for I’ve never done “chicken” very well. “Yes, honey. Do you think you can fix it? It is driving me bananas!”

“Oh sure I can fix it, but I’ll need Chris’s help. I’ll get it done this week,” he promised.

Do you know that over the last 2 days I have caught Terry standing in front of the T.V. numerous times with his head tilted? Ignorance is bliss. Now that he KNEW it was crooked, it seemed to exasperate him as well. The T.V. hasn’t MOVED or been ADJUSTED, yet now it seemed to really distract Terry too.

What “Bugs” Me, May Not “Bug” You

If you follow this blog because you have an invisible disability or service dog you will recognize a theme that often shows up here. No two disabilities are the same. Even folks with hearing loss have differences that make their hearing loss – or “hearing again” unique. I have become “pen pals” of a sort with numerous people who have Meniere’s disease. Yet I have never discovered any one individual who has exactly the same triggers as I. Through Fidos For Freedom, I have met a number of individuals with Multiple Sclerosis, mobility issues, deaf or hard-of-hearing, suffer from fibromyalgia, or other invisible “enemies”. I have learned that what may “bug” me may have no influence on someone else who may have a similar disability.We are as unique as our disability and abilities. I for one, like it that way. Something may look “crooked” to me and in need of straightening, but it may actually be fine to someone else.

I think we have to be very careful about assuming that every individual with a similar disability lives life the same way – experiencing the same frustrations and triumphs. The late-deafened crowd can be very bad about this as hearing loss is not “one size fits all”. Frequency, pitch, and decibel levels are all experienced differently by folks with hearing loss. Those of us who use cochlear implants and/or hearing aids may not experience the same benefit as another whose audiogram may look very similar. A listening environment may be very difficult for me because of the level of background noise, but you may be able to tune out things very easily with a specific “map” of your own CI.

Yesterday in church I experienced a painful reminder that what is “level” for one person may not be “level” at all for me. After church, the organist plays a piece of music as everyone leaves. People do a quick “catch up” with those around them or greet newcomers. Can I be honest a moment and say that it is all I can do not to wince when the organist begins to play? I try hard to control my expression, but I found myself gripping my hands together as I tried to make out the voices around me while my CI picked up the organ music loud and clear and deciphered the sound as best it could. I felt the hair on my neck stand up and …

I didn’t even know I had hair on my neck!

A plan of action is needed… I’m going to turn my CI off immediately after the service and just read lips.

If I tried to explain to someone else with hearing loss, they may not understand what the problem is and do just fine in that listening environment. As a matter of fact, I have noted a number of hearing aids in ears around me in the auditorium. They aren’t snatching the technology off from behind their ears and running from the auditorium screaming like a maniac. As I inwardly “shackled” my own maniac I couldn’t help but wonder how they did it. How can this surround-sound, swelling noise be ignored while they focused on actual voices around them?

Easy.

What was “crooked” to me was “on the level” for them. No adjustment necessary! We really have to remember that. I think it all boils down to:

1. Learn to communicate your needs clearly so others may adjust to best help.

2. Respect another individual’s choices and decisions made to find true accessibility.

Sometimes not much can be done to “straighten” what is crooked. Then our responsibility changes. I hope I can be gracious and accepting about things that cannot be “fixed” or “changed” to best meet my hearing and balance needs.

Denise Portis

© 2011 Personal Hearing Loss Journal

Random Definitions – Consider the Source

Published on by hearingelmo2 Comments

Aren’t definitions funny critters? Oh sure… you can use “Dictionary.com” or Merriam-Websters Collegiate “big enough to cause a hernia” dictionary to look up words. But the funny thing about the English dictionary? Words can mean different things. The words can EVEN mean different things – to different people. Some random definitions I have encountered in the last week include:

Now: To the mother who demanded the trash be emptied, it means immediately. To the 20-year-old son who will get to it eventually, it means sometime today.

D-cup: “What does ‘D-cup’ mean to you?” Response: “Male or female?” Speechless thought: “Wha’…   ?”

McDonalds: To the over-extended, ‘I forgot to thaw out the chicken’ parent, it means SUPPER. To the health-conscious, it means ‘heart attack in a bag’.

Snap: Daughter: “Oh snap, I forgot my key!” Mother: snaps fingers and looks quizzically at daughter. Daughter: (raises eyebrows and shoots an exasperated DUH look at mother…)

Normal: To a teenager, it means someone who “fits in”. To a dog, it means it can be eaten. To a person who happens to have a disability, it means “treated like everyone else”.

Yup! You often have to consider the source to understand how people choose to define common words. The word “normal” has cropped up a couple of times in the past several weeks for me.

First occurrence:

Kyersten and I were at Costco looking around and purchasing some bulk items to take back to Virginia for college. A lady did a double-take, looked at Chloe (my assistance dog), looked at my head and kept walking a few steps. However, she immediately stopped and left her cart, pocketbook and items and trotted over to where Kyersten and I stood to say, “Excuse me! Is that a cochlear implant?”

“Yes,” I replied.

“Oh my husband has one of those. How long have you had yours?” she asked with curiosity.

I preceded to tell her a little bit about my own activation 5 years ago and hearing health history. I was trying to keep an eye on her cart (with pocketbook that screamed, “Steal me. Someone steal me” in it), so was a little startled when she interrupted my nervous glances toward her cart to say, “But your speech! It’s so normal!”

In talking with her, it seems her husband was deafened at a young age and was essentially without sound for 27 years before he received his own bilateral implants. He evidently has a noticeable speech impediment. But what is “normal”? I have met late-deafened and congenitally deaf people from all over the United States. “Normal speech”? Some would argue my southern accent is not “normal” for the DC-Metro area. How one person with hearing difficulties speaks, is much like an individual accent. There isn’t anything “abnormal” about it. My son has perfect (selective) hearing, and he has a speech impediment. It is “normal” for him though. How pronounced his own speech difficulties sound, depends on how hard he chooses to enunciate words and regulate his speed. Who determined what “normal speech” was and determined the “yard stick” by which to measure all speech?

At Pearle Vision Center:

A lady and her daughter stopped to admire Chloe who was in a down/stay. “Oh what a beautiful working dog! Are you training her?”

“Oh! No… Chloe graduated 3 years ago. She’s always training, but I’m not her original trainer” I replied.

“Oh! You mean she is YOUR partner?” the surprised woman asked.

“Yes. She’s a hearing/assist and balance assistance dog. I am late-deafened and have Meniere’s disease”, I cheerfully replied.

“Oh wow… you look so n-norm- normal” she stuttered out (since she realized how inappropriate that was as soon as she started saying it!)

I just smiled and she walked away embarrassed.

Normal?

Very likely, this world would be a better place if people didn’t go around labeling others as NORMAL or NOT.

To someone, somewhere… you aren’t “normal” if you choose to define the word as “not like you”!

Denise Portis

© 2011 Personal Hearing Loss Journal