The SayWhatClub is an all-inclusive online hearing loss forum where it doesn’t matter what type of hearing loss you have, how or when you arrived at life with less hearing, or how you choose to live with hearing loss.  Some of our subscribers wear hearing aids, some have cochlear implants, some know and use various forms of sign language (even Crappy Sign), and some use assistive listening devices (ADL’s) and other technology.  There are even those, like me, who rely mainly on lip/speech reading and visual skills.  More often than not, you’ll find people who use a mixed bag of tricks to hear and understand in the noisy world in which we live, making SWC a great place to share what works for you and to glean benefit from what works for others. Many of our subscribers are also members of ALDA, CODA and HLAA.
 

A little history of our humble beginnings… in 1992 the SayWhatClub seed was planted during a chance meeting in an online bulletin board for the deaf and hard-of-hearing.  Registering relief at finding others like themselves, and recognizing the benefit of sharing their experiences with hearing loss, founding members formed a small email group that grew, over time, into what is now the SayWhatClub.

Incorporated in the mid 1990′s, the SayWhatClub currently plays host to several email lists, with subscribers from many corners of the world–India, New Zealand, Australia, South Africa, Israel, Canada, United States, and others–who have come together for the purpose of sharing and learning from each other’s unique hearing loss experience, knowledge, and insight.  We have subscribers who have been with the club from the very beginning (almost twenty years now), others whose participation began just recently, and everything in-between.  Our strength lies, partly, in our flexibility to change with the times and needs of those who join our ranks, and our diversity in dealing with hearing loss. 

When I first joined the SayWhatClub, I was in awe of the hearing loss knowledge and experience I found there, and I wondered a bit at what I had to contribute, as I knew little about living life with hearing loss beyond my own limited knowledge and success with technology.  The visual skills I acquired naturally, throughout a childhood of gradual loss, seemed a bit pale against the tech savvy and knowledgable experiences that some of the other subscribers had had.  I saw my own experience as less valid.  However, I soon learned there was no wrong or right way to arrive at or deal with hearing loss, and that any insecurity I was feeling was self-imposed.  As the days and weeks passed, I found my hearing loss voice and regained much of the confidence I had lost due to a drastic hearing dip that threw a wrench in the workings of how I personally dealt with not being able to hear.  I came to realize I had just as much to contribute, from my own unique perspective, as those whose experience at first glance seemed more valid.  

Hopefully, in sharing my own personal SayWhatClub journey, I’ve given you an idea of how diverse and flexible our club is, but I’d also like to make you aware of what unites us.  Every single subscriber came to SWC seeking support and information for their hearing loss.  Therefore, much of the discussion on our email lists is hearing loss related (though some general lists are more geared toward hearing loss discussion than others), but that doesn’t mean we are limited to conversation only about hearing loss issues.  We are much more than our hearing loss, and for that reason SWC places no limits (within reason) on what topics can be discussed, with the exception of two very focused lists, the Cochlear Implant List (for people interested in or already having had a cochlear implant) and the Menieres List (for people dealing with combined hearing and balance issues), both great places to learn and share about CI and Meniere’s Disease.  We recognize that online discussions are often the only type of group discussion that those with hearing loss are able to participate in, and as a subscriber of SWC, many find an ease of conversation that isn’t available to them in “real” life.  

I hope you’ll give us a look on our website, www.saywhatclub.com, and make sure you visit our weblog, at www.ahearingloss.com, and leave your comments while there.  SWC is also on facebook!

No matter how much we’ve grown, the SayWhatClub is still recognizable as the place that it started out to be, a place where those with hearing loss come together.  It is our hearing loss that causes us to seek out others like us, but it’s the support, friendships, and continued benefit of sharing that causes us to stay connected.  So, if you find yourself saying, “What?”, then SWC might just be the place where you will find support, understanding, advice, and/or answers to your questions, as well as the place for sharing your own hearing loss experience.  We all have a story to tell, each as valid as the next, and we all can benefit from understanding and support.

It repeals a long standing prohibition in NYS on the for profit sale of hearing aids by Physicians.  This prohibition was enacted to protect the rights of consumers by ensuring that Physicians do not benefit financially from the sale of products that they order or prescribe.

Let’s be realistic here,  do we really want our Internist prescribing hearing aids and not being required to have additional training?  Will this mean that the medical assistants will program the aids?  Can you imagine the waiting time in a Doctors office?

I don’t know about you but the last thing I want, are for more hearing aids to be left in bedside drawers.  I have yet to meet a parent who told me their Pediatrician diagnosed a hearing loss.  More often than not, I’ve heard of Pediatricians telling parents that the child will outgrow their chronic ear infections or fluid.   I’ve rarely heard of an Internist referring their senior patient to get an audiological.  Hearing loss comes with old age so why bother sending them for an audiological?

Could you imagine if a Physician was given the right to sell the drugs they prescribe to a patient or receive financial benefit from the referral of a patient to a clinical lab? The laws that are in place, were established to protect consumers from the possibility that personal financial gain could interfere with the Physicians independent medical judgement.

I bet I know what you’re thinking? Well, hey, Audiologists make a profit and receive financial benefit.  Selling hearing aids is a business just as selling cars is a business. However, do we want even more professionals involved in the selling of hearing aids? and if so, will they be required to be trained?  Well how about this, why isn’t the Senate spending more time on getting our hearing aids covered by insurances? or why doesn’t the Senate require the hearing aid manufacturers to control the prices of hearing aids?

I say, lets focus on the real issues and stop looking for ways to spread the specialty. Let’s focus on getting hearing aids fully or partially covered by insurances so that children and adults who are hearing impaired or late deafened can have access to the technology.

Call the Assembly switchboard this week at 518-455-4100 or contact your representative.  Oh by the way, I did not see one single phone number for the hearing impaired or deaf.  Strongly recommend you call either through relay, video relay and/or make sure to tell them you are hearing impaired or late deafened.   To contact a NYS assembly person:     http://assembly.state.ny.us/mem/

To Access the legislation:    http://open.nysenate.gov/legislation/bill/S3788-2011

Please pass this message to others who might be interested

Although I grew up in a hearing world, lost my hearing at the age of 19, resisted wearing hearing aids until I was 42,  focused working the majority of my professional career in the field of deafness, Deaf, and hearing loss all chosen without really much thought, unconsciously because of my own loss.  I learned to sign because it was the only “thing” available to help me communicate with other “deaf/Deaf” people and make an attempt at finding another social life outside my hearing world.  A Sign Language Interpreter was also the accomodation I asked for when I needed to know what was being discussed in large staff meetings at work.

My problem was, I just did not fit in with the deaf/Deaf community.  I wasn’t comfortable.  It wasn’t my world.  I was trying hard to be a deaf person, not a hard of hearing woman when in truth, I was and am a woman with a hearing loss who lives in a hearing world.  I was very comfortable in the hearing world and I’m very proud of the fact that I became extremely skilled at reading people. ASL taught me to be very aware of body language, facial expressions, the movements of the mouth and of course, the eyes tell me a great deal about a person as well as what they are saying to me about the individual.

It wasn’t until closed captioning and CART came along that I finally stopped to really think about who I am?  Most recently, CART and closed captioning has given me a great deal of hope and  brought me closer to accepting that I have truly found my comfort zone.  I became more involved with SWC (SayWhatClub) and met many people like myself over the years.  Then, I recently became involved with CCAC and realized that between these two major groups,  hearing impaired individuals really do have a culture of their own.

According to Websters dictionary, the definition of culture is: ” the customary beliefs, social forms, and material traits of a racial, religious, or social group; also : the characteristic features of everyday existence (as diversions or a way of life} shared by people in a place or time <popular culture> <southern culture>  the set of shared attitudes, values, goals, and practices that characterizes an institution or organization”

Hearing impaired and late deafened people share so much common ground that we can almost predict what the individuals’ experience has been whether it’s buying a hearing aid, going out to a restaurant with friends, or feeling isolated and lonely because hearing people don’t understand hearing loss.

CART and captioning and the English language are my form of communication (receptively and expressively).  My comfort level is with hearing and non hearing people whether Deaf/deaf or hard of hearing.  However, I do not belong to the Deaf community and once I accepted that and stopped fighting to be in the community and  denying my being a woman with a hearing loss who needs CART or closed captioning for meetings and entertainment purposes, I felt my world opened up.  Of course we also need hearing people to understand hearing loss better in order to communicate with us. 

The Deaf community is a wonderful place but its not my home. I was not born into it. ASL was not my first language but I am happy to have the skills to explore the culture and ethnicity of the Deaf community. My friends once told me, if I ever lost all my hearing, they would learn sign language for me.  I felt so lucky when they told me this.  However, I now realize that my friends will do whatever it takes to keep us together and communicate and I’ve decided, if I should lose additional hearing, we will do our best with whatever it takes to communicate.  Afterall, I am who I am, a woman with hearing loss.

So why write about SuperBowl 2011? Because this is the game that will be remembered by many of us who are hard of hearing and Deaf/deaf. It’s the  first time, a broadcasting station and the advertisers have agreed to caption the game as well as every single commercial and promotion during this SuperBowl game. And of all stations, its the FOX channel who has decided to make this year closed caption accessible.

I also just read on the NAD (National Association for the Deaf) website, that the NFL has agreed to a 22 year old deaf woman from Texas to sign in ASL the Star Spangled Banner and America the Beautiful.  What I found interesting was that the NAD stated that they wanted a deaf or hard of hearing person to sign the two songs.

I sincerely applaud the NAD for achieving this momentous occassion, however, I truly feel that this is how hearing people develop the misconception that all hard of hearing people sign.  I truly believe that this is why it can be difficult to get an employee to agree to CART and ask us why we can’t do with a sign language interpreter.

Over the years, I too would request a sign language interpreter at work, when I felt I needed assistance in meetings.  I never requested CART, and up until I joined the SayWhatClub, I didn’t even know CART existed.  Since its inception, I had always used closed captioning on my television  and I will no longer watch anything on T.V. without CC.

My point is that I worry about this misconception that all hearing impaired people know sign language.  I am concerned that hearing people will continue to believe that we are ALL signers. Most hearing people do not know sign language themselves yet, they get off the hook trying to communicate with us by believing we sign.  This way, they can write it off as either the hearing person (themselves) not knowing the “language” or the hearing impaired person (us) who doe not sign, cannot understand receptive language.  Rather than just trying to communicate with a person that is hard of hearing.

When its all said and done, I am starting to believe that there is a hard of hearing culture and we need to ban together to make CART and remote CART totally accessible for the hard of hearing.  The Deaf cultured community is a strong group because they have the NAD working to help them.  It’s time for us to become louder and stronger  about our needs as a group so that one day, we will be able to say, we are as important as any other culture and people will not only HEAR us but will be more sensitive and patient about our needs.

Oh, and by the way, this momentous occassion will not be appreciated by the hearing population unless they have a friend or loved one who is deaf or hard of hearing.  Just like our disability is referred to the hidden disability, this very special day will be hidden and go unnoticed by many.

Today in Nia* you said something to me in passing, “You must love to dance.” I heard you say it. I wasn’t looking at your face but I heard you clearly.Those five words held more meaning than you will ever understand. Let me try to explain.

I am deaf.

I grew up hard of hearing. As a child I didn’t know the power of music. It melted together like sweet ice cream, pleasant but not distinct. And so I didn’t dance.

The Texas cotton bottoms where I grew up were home to some of the finest sawdust-covered floors in existence – beer smelling havens, rich with the twang of steel guitar and heartbreak that is my heritage, yet the only time I was brave enough to ever waltz across Texas was standing on the tops of my Daddy’s feet in our own living room.

In the sixth grade I was thrilled to receive a coveted invitation to Toby Higginbottom’s boy-girl dance. I studied all of the lyrics to the top forty hits. I picked an outfit out of Seventeen Magazine and endured an eye watering home perm. I walked in feeling like a teen dancing queen but spent the night applying layer upon layer of strawberry lip gloss locked in a bathroom stall alone.

I’ve spent much of my life holding up walls, observing from a distance. I would sway. I would tap a foot discreetly out of time. I would mouth words silently or bob my head with my blood wishy washing in my ears.

At my prom, at my own wedding, I did not dance.

After twelve years of profound deafness, I received bilateral cochlear implants. They bypass my broken ears, the electrode arrays send impulses to my brain. I have had many known CI complications and a few no one has ever heard of. I’ve been in pain, suffered through infections, had an internal device failure and several balance damaging surgical revisions. Yet, I would do it all over again because today in Nia I danced.

I heard the music and I danced.

After class I sat in my car and wept just as I now sit and weep as I write this note to you. Your casual observation caused me to reflect on how far I’ve come, the beauty I have found in music, in movement, and the joy I have found in life.

Thank you – thank you dear sweet lady in the purple legwarmers for noticing. I do love to dance.

Peace and blessings,

Amy

*”Nia is a sensory-based dance practice that leads to health, wellness and fitness. Nia draws from disciplines of the martial arts, dance arts and healing arts. It empowers people of all shapes and sizes by connecting the body, mind, emotions and spirit. Classes are taken barefoot to soul-stirring music. Every experience can be adapted to individual needs and abilities. Step into your own joyful journey with Nia, and positively shape the way you feel, look, think and live.” from the Nia Now website. See it here on YOUTUBE

Are your hearing aids on?

    Don’t you just hate when someone says to you “are your aids on today? are you sure they’re working?

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 SayWhatClub is a strong support group for late deafened and adults with hearing loss.  We believe strongly in helping one another through our support groups and through Education.  The University of Washington needs everyones help, especially parents who have children with hearing loss or deafness.   You can learn more about the study here https://depts.washington.edu/projhql/  The University also has a facebook page about the study.  http://www.facebook.com/pages/Quality-of-Life-of-Children-and-Youth-who-are-Deaf-or-Hard-of-Hearing/121377458983