We Are All Ambassadors

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

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On the Level

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