The internet is the ideal way for those with a hearing loss to communicate. Here we never have to ask for repeats. The SayWhatClub welcomes newcomers and loves to answer their questions about hearingloss, as their own questions were answered when they first joined. But we also enjoy just “chatting” with each other about news events, personal events, and anything that comes to mind because it’s so difficult for us to do that in “real life” anymore. Everyone understands why we’re here, and what we go through daily as people with a hearing loss.

The internet has opened a whole new experience for many of the isolated hard of hearing in the world. The SWC has members from Australia, New Zealand, England, South Africa, Canada, India, several other countries, and of course, the U.S.

By using the internet to both reach out to and help people with a hearing loss, the SayWhatClub hopes to grow and continue to help folks in an immediate way, and in a way that is ideal for people who have trouble communicating via being able to hear. We hope anyone with the slightest interest will try us out. You have a lot to gain, and nothing to lose.

www.saywhatclub.com

I’m totally baffled and perturbed by the hearing aid industry and audiologists.  I’ve just about had it.  I recently interviewed two hearing aid companies:  Oticon and Sonova Holding HG.  You can read the interviews yourself at http://www.saywhatclub.com/newsletter/june09/interviewgw.html and the Sonova interview at: http://www.saywhatclub.com/newsletter/june09/interviewgf.html

In case you were not aware, Phonak and Unitron are under Sonova AG Holding.  In anycase, I find it interesting that each company believes their product is number 1. What I find interesting are the questions that went unanswered and left me with a bad taste in my mouth. 

Why can’t hearing aid companies tell us how much it costs them to make a hearing aid?  Afterall, we have a pretty good idea how much it costs to make a car, how much it costs to make a movie, a video, clothing, etc. Yet no one wants to be honest about the manufacturers cost.

The manufacturer claims the audiologist makes a big profit and the audiologist claims the company does.  I now know the restocking fee is the audiologists, not the manufacturers fee, and in all honesty, the audiologist deserves that fee.  Afterall, they are spending time with us for the fitting and the programming.

However, I don’t know how any company or audiologist can think that a $3000 hearing aid is worthy of its cost.  We get a 45 day trial period, yet I am told that it can take up to 6 or 7 months to adjust to the sound.  Duh! I am $3000 down if I hate the sound after 6 months.  I wonder how many audiologists have stuck earplugs in their ears for 24 hours?  How many manufacturers make their Executive Boards wear the earplugs just to get the sense of a 35 db loss?

I recently went to see a new audiologist and though I liked her alot, she was totally unsavvy concerning assistive technology.  This is really not a good thing.  Why aren’t the audiologists being trained to understand the clients who need this technology to function?  Simple things like bluetooth technology and loop systems.   I don’t know about you, but I am so frustrated, I want to just get the software to program my own hearing aid and purchase an aid online.

Written May 16, 2009
 
I’ve been visiting my two oldest kids in New England for the last two and a half weeks.  Last night my daughter and I drove, from where she lives in Vermont, to my son’s home, in Salem, Massachusetts, so the four of us–my husband had driven from Vermont earlier that same day–could spend one last weekend together before my husband and I headed home on our return trip to Minnesota.
 
I picked my daughter up at 11:00pm, after her shift, from the hospital nursing home where she works as a nursing assistant, and we headed south from there.  We arrived at our destination just after 2:00am, tired and ready for bed, but stayed up another hour talking and deciding who would sleep where.  My son lives in a very small apartment, yet no one seems to mind, as the close quarters makes for a cozy and intimate visit.  My husband and I called dibs on the bedroom (I’ve slept on the futon and it’s not good.  LOL), my son took the futon, and his sister crashed on an airbed on the floor.
 
Early the next morning I got up and made my way to the bathroom to shower, scaling past the TV, being careful not to step on the air mattress wedged between the futon and television.  As I finishing up my morning routine, I exited the bathroom and found my daughter and son awake, still in their beds, talking quietly. Because I miss those moments most–the times when the kids were small and all four of them would come into our bedroom, on weekend mornings, to pile into bed with us–I climbed into the queen-sized airbed and snuggled under the covers, next to my daughter, to join in on the fun and conversation.  A few minutes later, my husband came in from wherever he had been off to and climbed in on the other side of my daughter, the three of us on the airbed and my son on the other side of my husband, above, on the futon.  Almost perfect, if not for the absence of my two youngest kids.
 
The conversation came around to music, as it most always does, and the three of them began sharing songs from their iPods and iPhones, talking and laughing over what they were listening to.  Of course I was hearing almost nothing they were saying, didn’t recognize any of the music, and had absolutely no clue as to what was so funny, but on this morning I didn’t seem to mind being left out.  To interrupt, in order to ask for repeats and explanations, would have somehow changed or taken away from the interaction, the flow of the conversation, and the spontaneity of the laughter.  I found myself looking on, perfectly content to watch the happy scene and to savor the feeling of family intimacy I miss due to our kids being grown and so far away from where we are.
 
It’s funny how in the times when I feel left out I sometimes don’t know whether to laugh or cry?  It may even be true that I have no control over which way it goes? 
 
At the very moment my lack of hearing stands up and robs me of understanding and participation, I feel as if I’ve been punched in the stomach.  I try to catch up, but when I realize I can’t, I get a rush in my chest, my face flushes hot, and there is a fraction of a second that hangs in the air.  One, brief, moment while my heart waits for the trigger that will determine which way the next moment will go–laughter or tears.
 
I wonder at what makes a situation more bearable than another?
 
On this particular morning it is laughter that won out, and in this instance I know the reason why. The visual of three of the people I love most in life, having fun, sharing intimate moments, laughing and making jokes over a shared interest, was enough to tip the balance in the favor of laughter.  It really didn’t matter that I wasn’t catching the specific content of what was being said or what was being laughed about.  Simply being part of a setting that brought back the feeling of those weekend mornings of long ago, when we laughed and talked, six bodies in one bed, two parents and four little kids, gave me such a wash of contentment that I couldn’t bear to interrupt or give in to that ’sad’ and ‘left out’ feeling that not hearing sometimes leaves me with.
 
Tomorrow, I’m afraid, I will find reason enough to cry, but on this day my heart chose to laugh.

Michele

I HATE when people just don’t get it.  Hearing people that is.  I use to hate when people with hearing loss are in denial that they are losing their hearing and these are bright intelligent people, who rather suffer and pretend than look into wearing a hearing aid.

I don’t want to hate hearing people who don’t understand or people with hearing loss who are too vain.  I want to yell at the top of my voice,  do u have any idea what its like to hear you all muffled? or people who think its funny to open their mouths wide and exaggerate their words.  I have a guy at work who thinks its so funny to refer to me as being deaf.  I’ve pulled him aside on several occassions to have a talking to.  He still doesn’t get it.

I started doing staff developments at work and have received a very positive responses.  I made them all wear ear plugs that gave them only a 35 decibel loss while I spoke.  Several pulled them out after a few minutes and you could just see the disbelief on their faces screaming, “thats a 35 db loss?”   It certainly scared them enough to ask alot of questions.  I did a whole power point on how many children and adults have hearing loss in the U.S. alone.  How many parents admitted to not aiding their children and how many children were failing school due to a lack of access to communication and hearing properly.

Sometimes I just want to yell from the top of the Empire State building,  PEOPLE WAKE UP…..WHY ARE U ALIENATING US, WHY ARE YOU AFRAID OF US? Are you afraid you might become one of us?  Well, the truth is, you just might one day, but it wont be because you caught it from us.  However, what goes around, comes around.  Treat me badly and that will come back to haunt you.

There are approximately 1 out of every 6 people walking the streets in the U.S. with a hearing loss. I suspect those numbers are going to change very quickly over the next decade to something like one out of three.  We are a techno smart society but most just can’t understand hearing loss. Lets hope the baby boomers will drop the vanity, refuse to pay $3000 for the best hearing aid on the market and advocate for understanding rights to hearing that doesn’t cost us our life savings.  Lets hope people can stop thinking old age when they start losing their hearing, and stop stigmatizing their own children who have hearing loss and refuse to aid them….that is definitely and should be illegal.

It all started nearly 14 years ago.  I was one of New Zealand’s first cochlear Implantee’s back in 1993.  In fact there was very little information about Cochlear implants on the web back then.  As editor of New Zealand’s cochlear implant newsletter I was always looking for articles, and searching on the internet for them.  

So it only goes to show that eventually my searches found the Say What? Club by way of one of the founders – Bobdeafie.  He invited me to join the group, so I did.  Next thing I knew I was getting lots of emails from people from all over the world who were like me – hearing impaired, deaf, hard of hearing, cochlear implant would be’s etc… 

Over the years, I’ve made many friends through this group – some lifelong.  I’ve headbutted with a few, cried along with them, and had many many laughs.  It’s the laughter that keeps this group together, the sheer joy of laughing about things that happen to people, and knowing because of your hearing loss, it’s either happened to you too, or could quite likely happen.  It’s a group that puts our hearing loss into perspective, helps us when things get bad and you’re down because of it, opens your eyes to the many devices that are out there to help us, and simply gives us a sense of belonging.  Coming home. 

It must be pretty good as 14 years later the SWC is still a huge part of my life.  

One of the most exciting things about the SWC is the people I’ve met.  First came Bob and Ling who came and stayed with me any years ago, then Joanie from New York, then Steven from San Francisco.  I met up with Rick in Australia, and Emily from New Jersey has been out here several times now. And just yesterday, Jeff  and his daughter was in Auckland for the day so I was able to show them around. 

Last year I won the SWC Scholarship which enabled me to travel out to meet up with so many at the Philadelphia Convention.  It was a really special time putting faces to the names I’ve been corresponding with via email for 15 years.  One of the most exciting things to happen to me in my life.   I came home to New Zealand, with some great memories, ones that I’ll keep forever. 

The SWC opens up the world as well.  Not only do we have people in America, but also Australia, New Zealand, England, Finland, India, Canada, and South Africa.  We learn about different countries and cultures, and we know if we’re ever travelling in those parts of the world, there is a friendly face waiting for us to meet them.  

I would recommend SWC to anyone who is wanting to find out about  hearing loss, or just wants to ‘hang out’ with people who you know will understand the frustrations that we come across in our every day lives when one’s hearing isn’t 100% perfect.

For more details… Head to… http://www.saywhatclub.com/ 

I look forward to getting to know you !

 Cheers

Robyn

This morning I woke up coughing, again. My head, back and chest hurt. My throat was raw and swollen. I have been sick for over a week. With these latest warnings of a near swine flu pandemic, a doctor seemed like a good idea. The receptionist was able to squeeze me in with someone I hadn’t seen before. I could go right away.

The only problem was it I hadn’t seen this doctor before. Seeing a new doctor shouldn’t bother me. But I like MY doctor– the one who remembers to face me when speaking.

I have requested more than once that the clinic write “deaf ” on my chart. Trouble is they no longer use physical charts with paper. All my information is on a computer notebook that gets carried from room to room.

So once again, I told the receptionist I am deaf as I signed in. I actually had to tell her three times. First she talked to me with her head down. Next she said something while I was signing insurance forms. MY head was down that time. And finally, before slogging over to a chair in the waiting room, I reminded her a third time I couldn’t hear well.

“Please tell the nurse to tap me when she’s ready,” I ask.

“No problem.” she says.

Yeah. Right. I’ve only asked that a nurse tap me each and every doctor visit for the past five years. And the receptionist fails to relay this info — each and every time.  Or maybe she tells the nurses and every one of them ignores it — I’m not sure who is to blame. In any case, I sit and wait. After about ten minutes all the other patients have been called away. I am the only one left in the waiting room, when finally I look up from my magazine and watch as a nurse stands across the room to call my name. No tap. Luckily I looked up at just the right moment.

“I called you before, but you were reading your magazine,” she says. “Are your ears plugged up?”

“No. I’m very, very hard of hearing,” I explain.

“Is that from the cold?” she asks.

“No.”

“I need to ask you some questions,” she says. “blah–blah. blah, blah BLAH–”

I stop her mid-sentence. “I don’t hear well,” I say, “Can you look at me?” (The fifth time I’ve reminded someone I couldn’t hear today.)

“OH! Yes, well– Do you feel any soreness or pressure in your ears?”

“No.”

“Tell me about your symptoms.”

I tell her.

“Do you blahblah-”

“I didn’t get that. Can you take your hand away from your mouth.” (sixth time)

“Oh sorry,” She smiles. “Do you have a temperature?”

“I have had one off and on, but I didn’t take it this morning.”

“We’ll take it in a minute. How’s your blood pressure?” She starts to pump up the cuff. I am silent while she listens. “It’s blah-blah blah-blah blaah-blah-blah,” She’s looking away again.

“Sorry? I didn’t get that, I couldn’t see your lips.” (seventh time)

“OH! So sorry!” She smiles again, as she gets out her ear thermometer and goes for the ear.

“Wait,” I say. “I have to take out my hearing aid.”

“You wear hearing aids?” she asks with a confused look on her face.

“Yes, I’m deaf.” (un-frickin-believable!)

She takes the temp, then says doctor will be in shortly. I wait for the doctor.

___________________________________

“Hi! Blah-blah-blah-blah–”

“Nice to meet you. I’m very, very hard-of-hearing,” I interrupt. “I need to see your lips.” (ninth time)

“Oh!” she says. She’s got all on my info on the small laptop. She scans the screen, then asks,”How did you lose your hearing?”

I’ve explained my hearing loss to at least five different doctors at this clinic over the past twenty years. I go to a specialist, and I know he has sent his findings on several occasions. I know there’s info about my hearing loss somewhere in my real physical chart, wherever that is now. But OK– maybe it’s not her fault. She’s new. She’s busy. There must be someplace to flag a hearing issue in that laptop. I wonder if maybe there’s some weird glitch with their medical software that prevents them from entering or highlighting a hearing loss. I’m trying to give them the benefit of the doubt.

I tell the doctor my hearing loss history and notice she’s not typing anything into her laptop. (sigh)

So. I’m up on the examining table now. She feels my lymph nodes and mumbles.

“What?” I ask. “You turned away.” (tenth time!)

“Your lymph nodes are swollen.” She gets out her little otoscope. I know what’s going to happen next. It’s been a couple minutes. She’s concentrating on her diagnosis and has already forgotten about my hearing loss. I can see it in her face. I wait. Sure enough. She dives in with the otoscope. “OH!!” she exclaims.

“Do you need me to take out my hearing aids?” I ask. (eleventh time!) I take them out.

She says something. “I can’t hear you without my aids. . .Can you look at me?” (twelfth reminder!!)

“Do you hear pretty well with your hearing aids?” she asks. After that, I lose count. She babbles away about treatment. I have bronchitis. I need her to write some things down, cuz I’m just not getting it. Medical terms.

Do I hear pretty well with my hearing aids? You gotta laugh.

Most of us are aware that a Deaf culture exists. Simply visit a state school for the deaf, and observe students and teachers communicating mostly through American Sign Language (ASL). Or sit in on a coffee house “chat” with a local Deaf social group, and notice how quiet the room is while attendees use sign. The Deaf culture is something its participants are proud of, a culture with a shared ASL language and communication style that goes back many years.

Now observe a local meeting of a hearing loss support group. The keynote speaker communicates with both sign language and orally. A man sitting in the back relies on an ASL translator to understand the speaker. A row of people read real-time captions from an overhead screen as a person types what the speaker is saying. Two women sitting up front watch the speaker’s lips attentively to catch each word spoken. All of these people, except the sign interpreter and typist, are hard of hearing. Yet they all have different ways of communicating and understanding one another.

Without a shared communication style, can individuals with hearing loss really have their own sense of community or culture? Readers of this blog recently shared their opinions…

“I have total hearing loss in both ears. But because I was adult deafened and am oral and do not use sign language, I am not considered culturally Deaf, rather hard of hearing. Yet I am “deafer” than 95 percent of the students at the local state school for the deaf who have some residual hearing. I am in between cultures. I cannot participate in the hearing community, nor the Deaf community.” – Sherry Mason, Missouri

“My husband has hearing loss, and it is very difficult to hear in restaurants and other public places. I think people who don’t deal with hearing challenges are unaware of the obstacles they create. Is that cultural?” – Amy Hemingway Smith, Texas

“How about coming up with a definition of ‘culture?’ And with some parameters for what you mean by ‘hard of hearing’ people? Do you mean only people with partial hearing loss who use speech (and maybe speechreading) to communicate? I’ve been assuming you are distinguishing between Deaf people (who use sign language) and hard of hearing people who don’t, but not everyone will realize that. Also, I still think that only people who socialize with several oral hard of hearing people at the same time can really answer the question. People who have never done so aren’t in a position to know themselves whether or not there is a HOH culture–they won’t have seen it in action.” -Dana Mulvany, Washington, D.C. (has hearing loss)

The last comment raises a good question. How can a hard of hearing (HOH) culture be defined?

• A shared communication style. They prefer to speak orally, instead of only using sign language. Lip reading (also known as speechreading) is also a common way to understand one another.
• A strong reliance on technology. Hearing aids and assistive listening devices are available to help the HOH population understand speech and hear important sounds.
• A strong reliance on closed captioning. Captions assist with understanding television, movies, and (when available) live presentations. This could also fall under the technology category.
• Emotional connection. This would include not always feeling connected with the hearing world because of difficulty understanding speech. For those not comfortable with sign language, they may not feel part of the Deaf culture. Emotionally, individuals with hearing loss might feel somewhat isolated from the hearing and/or Deaf “worlds.”

Author Bio:

Shanna Groves is the author of Lip Reader (June 2009 release), a novel about an Oklahoma family’s hearing loss experiences during the early-1980s. Read the Lip Reader Blog at http://shannagroves.blogspot.com.

I am finding that telling people, “I am deaf.”, nets so much more understanding and accommodation than any of the other descriptions (hard of hearing, hearing impaired, et al.) I have tried over the years. Before joining the SayWhatClub (SWC), I would have felt like a fraud using “deaf” to describe my severe/profound hearing loss to others. I have never felt entitled to use the word. I guess I thought “deaf” was reserved specifically for those who have no hearing at all?

When I first started losing my hearing, as a child, I wasn’t even aware that I did not hear the same as others. My speech developed somewhat normally, and as I gradually lost more of my ability to hear, I gained ability in other areas to fill in the gap. I had enough understanding and hearing that it never would have occurred to me to call myself “deaf”, or anything else, for that matter. Heck, I usually didn’t tell people of my hearing loss at all, unless it was absolutely necessary. However, the skills and confidence that I possessed in my younger years began failing me, and I found myself constantly struggling to hear in most situations, which is what led me to the SWC. Once a member of SWC, I participated in many online discussions and learned I don’t have to be completely deaf to use the word “deaf” to describe myself to others. I learned there are many levels of deaf/Deaf, so I started trying it out, using the word, quite awkwardly at first.

I recently went shopping for sheets and a quilt for the queen-sized bed I downsized to. I was standing, looking through a sale bin of quilts when the sales lady, from far across the department, up on a ladder, stocking comforters, said something. I didn’t really hear her and was not even sure her attention was directed toward me, but the movement on the ladder caused me to look up. It turned out she was speaking to me, trying to tell me about the sale items I was looking through. I called out to her, “Sorry, I didn’t hear you, I am deaf.” She then commenced to perform an improvisational sign language/pantomime (still on the ladder) that really was quite good, as it became perfectly clear to me that she was trying to tell me that the sale items I was looking at were 50 to 60% off of the already reduced price. Still searching for exactly what I had in mind for my new bed, I navigated closer to where the acrobatic and dramatic sales lady was standing and asked for confirmation that I had interpreted her charade correctly. She assured me I had understood her perfectly and complimented me on how well I hear for being deaf. I smiled.

Owning “deaf” doesn’t mean all of my days go as smoothly as the day I went shopping for bedsheets, as not everyone is as free in their expression, when trying to help someone hear and understand, as the sales lady on the ladder. Days such as that day continue to build my confidence and seem to make the fact that I can’t hear a minor inconvenience to my day, instead of an insurmountable disability that I am always striving to overcome.

I still have my days where little goes right, days when it seems I am going through life in a bubble, understanding almost nothing that is said to me no matter how much time or effort someone puts into trying to help me understand. On those days I find myself slowly shrinking away until at day’s end I feel but a speck of dust in the great vastness of things. Usually, though, it is my lack of confidence that plays a big part in the slightly bad days spiraling into much worse days. Sometimes all it takes is one embarrassing misunderstanding, one rude person, one simple mishap to start the ball rolling that strips me of the confidence I need for my day to go smoothly, but happily those days are less, and the good days are more, and continue to get better and better because of becoming more comfortable with myself and with telling others what they need to know about me–I am deaf.

If there was no other benefit in joining SWC than learning to own the word “deaf”, that one thing would be enough of a reason. A simple thing really, but sometimes it is the simple things that don’t occur to us.

Michele