We all know Audiologists we love but hate to leave because they’re “so nice.” However, we constantly return to them to reprogram our aids and eventually ask for the manufacturers’ rep to come in and help.  For some of us, it’s many hours in the Audiologists office, waiting for an appointment or just getting frustrated and “getting use to it.”   Sorry folks, but no one should have to be told to “get use to it” when it’s the audiologist who is here to help you.  Yes, we have to acclimate to the new sounds we may have missed or even put up with sounds we don’t miss, such as the sounds of flushing toilets, flatulence, burbing and so forth. 

Let’s face it, the reality is, technology, especially hearing aid technology, is changing faster than the speed of light over the past decade, actually it appears to be changing every 6 months.  I fear buying an aid today because there might be something better tomorrow.

  I had seen an Audiologist (unfortunately, with a heavy accent)  last summer who had recommended the “best of the best, top of the line, Widex Mind 440 with its Zen programs (sort of sounds like something out of a Sci-Fi magazine).  The first mistake I made, was seeing an Audiologist who is bilingual with an accent but not in the language I needed her to speak clearly in…English.  Her accent was way too heavy for me to catch what was being said during the audiological testing.  Therefore, we never really got a true reading on my word discrimination.  This was my fault and she and I should have discussed it openly and honestly.  We didn’t, because I know people who love her and are happy with her but they are all Asian. And I guess, she did not want to discuss it with me, because she may have thought I would not recommend anyone.   However, she is someone I would continue to recommend to my Asian clients to.  This was totally my fault.

The Audiologist felt the Widex was perfect for me, yet she could not get the programming quite right for ME.  We had the rep come in twice (which meant waiting additional times to coordinate appointments) and who immediately felt that the instrument I was recommended and wearing for the past month, was too high powered for me.  Jeesh! wouldn’t an Audiologist know that?  Well, as it turned out, the rep had the Widex 440 in a lower power model and she loaned it to me until a new one would arrive with a new trial period starting the day I receive the new aid.

I waited another two weeks, received the new aid but low and behold it did not have the controls I had initially requested. By the time I received the correct model and tested it for another 45 days (which brought me up to 4 months with the hearing aid), I decided the aid was not for me.  I felt that music sounded off, background noise was bothering me and all in all, the reality that this Audiologist was just not getting it right, meant I had to be selfish.  I returned the hearing aid, I was down $300 but felt the time put in to my visits were well worth this so called restocking fee.  Why they call it a restocking fee is beyond my imagination.  It’s a fee that goes to the Audiologist for their time spent with you and personally, they should get that fee if they have given you the time. We parted on good terms and no hard feelings.

What to do next?  I was actually somewhat embarrassed, as here I am in the field working with many audiologists, clinics and top surgeons, yet I could not find myself an Audiologist who I can trust to know what I need.   I spoke to friends in the field and finally after spending alot of time researching, decided that buying a hearing aid is truly a job.  You’re not only shopping for the right hearing aid, you’re shopping for the right technology savvy Audiologist who can look at you as a whole person and not just as a potential buyer.  

I can fully understand why 1 out of 3 hearing aids for senior citizens land up in their night tables. However, I do believe the numbers are higher.  I spent hours going back and forth to the Audiologist last summer through the end of October.  Can we really expect that from an elderly consumer in order to get a proper fitting?  In my case, I truly got lucky.  A good friend of mine who happens to be an Audiologist and colleague, recommended an Audiologist who I so happen to have on my list of referrals for my clients.  She swore to me that he is a whiz at programming aids.   I never recommended anyone to him because the distance for my clients would make it difficult for them to do follow ups, which are so important at the beginning, when purchasing an aid.  In all honesty, it was not the easiest location for me either but I decided if he’s good at what he does, it’s worth my time and efforts.

My first meeting was a real eye opener. Mr. Audiologist asked me several questions concerning what I felt I needed to benefit most from in purchasing hearing aids (in my case one hearing aid).  We discussed my trial periods with several aids, those I was not willing to look at and left the rest up to him.  My first meeting with him took a bit over 2 hours…..wow! that alone impressed me.  I’ve never ever had an Audiologist spend that much time in getting to know my hearing needs. 

In the end, he felt I could gain a great deal from the Oticon Agil Pro.  Due to my work life and social life, I ordered the streamer as well.  When the aid arrived, I promptly received an appointment, tested out the equipment and he wanted me to make another appointment whether I felt I needed it or not.  Before my next appointment, I made a list of concerns, questions, likes and dislikes (which there were none).  My third appointment was great and I truly felt blessed with the new equipment.  He had wanted me to return before the trial period was due but I did not feel that was necessary but made an appointment for August.  I have since received a snail mail from his office telling me how proud he was about my adjustment to the new aid. I gather he does this with all his clients and though I really did not feel the need for this feedback, I must say, that for those who need more time to acclimate, it is certainly a good and well intentioned letter.

So, my purpose in writing this long post is to say, there are excellent Audiologists out there who know what they’re doing and that sometimes, going the distance is well worth it.  I have always been an advocate to have aids fully covered by insurances and still am.  However, since I am lucky enough to afford the technology, I am grateful to have it and wish everyone could.  We need to keep advocating, we need to keep writing our Senators and Congressmen and women. Afterall, a day will come, when they too will need this technology.

It’s sort of humorous that I’ve known since I’m 19 years old, that I have Otosclerosis and that its a progressive disease.  However, when the Doctor at that time told me I would be deaf by the time I was 30 and did not go deaf, I ruled that the Doctor had no idea what I truly had.  And so, years have gone by and only recently, have I noticed my tinnitus had become incredibly loud  along with dizzy spells. 

The current Doctor explained that my audiogram looked as if I had Otosclerosis and that I would need to have a cat scan on my good ear.  He was concerned that the Otosclerosis may be spreading, possibly causing me to lose hearing and feel dizzy.  Though I had a hearing evaluation 8 months ago, he asked that I get a more recent one done.

Well, yesterday I did just that and the results were that my hearing went from mild to severe to moderate and profound.  Shock and disbelief almost gave way to denial, but being in the field of working with deaf and hearing impaired, I knew I had to deal with this and be as realistic and prepared as possible.  I was now very close to the severe range in my low frequencies when I was once on the upper mild range.

In two weeks I’ll have a cat scan and hopefully some news as to how much bone deterioration there is and if I am too lose more hearing, what time frame am I looking at.

What are my fears?  Well, first off, that I’ll never hear music again, that I’ll never hear my friends voices and worse, I won’t hear myself or my breathing.  I’m not running scared but I need to know what I’m dealing with or what I will be dealt.  The fear of being alienated and islolated from people is very real and though my girlfriends quickly responded with, “we’ll learn sign language,”  I know that girls night out won’t be the same.

For now, I want to feel that I have choices, that my options to wear a hearing aid successfully will be realistic and that control of my own life won’t be lost to dependence.

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

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.

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.

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

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.

This being said, I have decided to be more honest with myself and with people I don’t know re: my hearing impairment.  I’ve decided that it is perfectly OK to tell the cashier, the waitress or whomever I’m speaking to that I have a hearing impairment, and could they please talk slower and speak up for me?  I have tried this new-found approach just this week.  I met a girlfriend for lunch, and I arrived first.  I went up to the hostess and requested a table that was not located in the center of the restaurant (booths work well for me as far as blocking out noise in restaurants).  I said “I have a hearing impairment, and it is better for me to sit at a table or a booth that is not in the open, but against a wall.”  The hostess then took me to the quietest area of the restaurant and sat me in a corner booth (perfect!) as I waited for my friend.   When I went to the grocery store later that day, the cashier asked me a question.  I asked her to repeat it, but still no comprehension on my part.  I then just said to her “I have a hearing impairment, and it’s very hard for me to understand what you are saying.”  She then talked a little louder and slower and just asked “Coupons?”  I got it that time!  In my experience, I’ve also discovered that when you are honest with people and tell them why they need to repeat what they said or word it differently for you, they are more than accommodating in the request.   I am learning to give people more credit than I did in the past, which has allowed me a more positive view of the world.

This year we had two members from New Zealand who so happened to sign.  That is, they signed New Zealand sign language.  Knowing ASL, I was amazed at some of the similarities and differences.  I was also amazed at hearing their accents.  Thats right, they have the accent, not me!

 One thing that always appears to be fun is not having any hearing people around.    All of us are speaking but no one there to tell u you’re speaking too loud or telling you u’ve misunderstood what was being said or that you’re speaking out of turn.   Sometimes, I have to admit, its somewhat comical.  Looking around the room, everyone’s mouth is moving but I can’t tell which conversation I’m listening too and for some reason, it doesn’t matter.  No one gets upset about not hearing and everyone is willing to do whatever they can to get the message across.   Of course, sign language is always a good alternative. But most of us are not signers but we are certainly talkers.

The comeradie is just nothing u can get anywhere else.   Anyone have stories to share about their convention experiences in the deaf or hearing loss communities?

Summer will be here before you know it, and many of us are making our travel plans already.  Hotel stays can be a major pain when you’re deaf or hard-of-hearing.  Most of us have created accessible homes.  We’ve got our captioned televisions, our accommodated phones with amplifiers, Captel, TTY or a VP.  We might have a vibrating alarm clock, and a fire alarm that flashes lights to wake us up when we’re sleeping.  Our front doors might flicker lights when people knock, or when the doorbell rings.  All of these things give us a sense of security and comfort in our homes.  

We can’t help but feel a bit uneasy staying in a large hotel without the comforts we’re used to.  AND we shouldn’t have to stay in hotels that don’t accommodate us.  The ADA is about accessibility.  That means whatever a hotel provides for its regular patrons, it must provide an equally accessible alternative for YOU. 

I’ve found many hotels aren’t aware of the law, and it’s crazy since the ADA was passed in 1990!  Here’s a business brief you can use to help make hotels aware of their responsibility to accommodate deaf/HH/Deaf people the next time you make hotel reservations.  ADA Hotel Business Brief  I’ve made a short list of requirements copied directly from the Business Brief.

• TTY on request for use in the room
• Closed Captioning on TV’s
• Visual alarms connected to the buildings emergency system
• Visual notification devices in guest rooms to alert persons with hearing impairments to incoming telephone calls and door knocks or bells.
  Electrical outlets to facilitate the use of text telephones.
• They may not deny a service Hearing dog from staying in a room
• Though it doesn’t specifically mention alarm clock, because alarms are typically provided to all guests and the law is about equal access, a vibrating alarm clock is a reasonable request.  Many hotels do include them in their deaf kits.  They are not expensive. 

One thing you need to be aware of is that the ADA does not apply to smaller bed and breakfast type inns with less than five rooms.  While it’s entirely possible an innkeeper may be willing to accommodate you, he or she doesn’t have to.  I ran into this up in Canada once.  Though the B&B had more than five rooms, I didn’t know their laws in Canada.  I was surprised to find the TV wasn’t captioned.  The innkeeper did offer to buy a used TV that night, so I could watch it for my stay, but I told him not to.  I watch so little TV.  I had several books and was fine.  I thought it nice that he was willing to go out of his way to accommodate me. 

You will run into unfortunate situations.  Last spring I stayed at the Hilton in Albuquerque, NM at 1901 University Boulevard NE.  I was invited as the guest of a friend who was staying as a guest of her employer.  In other words, the room was registered under her employer’s name who wasn’t staying in the room. 

It was awful.  The hotel had bought these brand new HDTV’s and couldn’t get the captioning to work.  For four nights in a row they kept sending the handyman up to try to get it to work.  Each day they promised they would get it to work that night and then failed.  My friend and I wanted to watch a movie.  We offered to switch rooms, but were told ALL the TV’s in the hotel were the same.  On the last night, the janitor/handyman finally admitted the captioning had been disabled throughout the hotel because “other” hotel patrons had complained it was tempermental–coming on when they hadn’t turned it on.  Before we checked out I complained to the manager, telling him the ADA required captioned TV’s in hotels.  I couldn’t believe his final comment.  He said, “Well ma’am, the ADA only says I have to provide captioned TV’s, NOT that I have to know how to operate them.” 

I complained to the Hilton headquarters later because of their manager’s attitude, but there was no follow-up on their part that I know of.  I’m sure it was because they had no record I had even stayed there, since I was the guest of a non-paying guest.  I didn’t bother with it further.  What was the point?  I never paid anything for the room in the first place.  My friend’s boss paid.  All I wanted was for the situation to be fixed, which the manager said he intended to do.  He was WRONG because he wasn’t following the spirit of the law.  I’m sure his attitude will come back to bite him another time. 

The intent of the law is equal access.  Remember that.  If the manager knew how to operate the televisions for his regular patrons, then he should have known how to operate the captioning on his HDTV’s, or at least have had someone in-house who could.  There was no need to spell out in black and white that the manager needed to know how to operate the equipment he provided.  Equal access means that he provides the same services to us that he provides to his hearing patrons. 

In the future when making reservations I do intend to ask if the hotel has HDTV and IF they know how to operate the captioning.

One final point,  all of your accommodations should be set up in advance when you make your reservations.  Ask for the accommodations then, not when you get there, so they have time to prepare.  Often times when you check in, the desk staff doesn’t know where the “deaf kit” is kept.  Then they end up looking all over the place, and can’t find it.  Also ask for your accommodations in an email, This way you’ll have it in writing.   Before you leave, remind them again.  Additionally– It may sound picky, but ask that your alarm clock be plugged in, your amplifier/TTY be set up in your room, and the TV be set so the captions are on, etc.  Other hotel patrons don’t have to plug everything in when they arrive and you shouldn’t have to either.  Remember– Equal Access.  You’re paying a lot of money, and deserve equal treatment. 

Copy the link above and keep it with you.

 Kim