You should be part of the festivities without making yourself uncomfortable or feeling your making others uncomfortable.  Our only responsibility is to make ourselves comfortable and everything around us accessible.  Your loved ones want to be heard and you want to hear them.  Clearly, you have more than enough time to put things in place.

I recently found out that Oticon has what’s called a partner microphone aka: connect line microphone. I have the streamline link already and I am going to my audiologist to try out the microphone.  It allows me to have a conversation one on one in a party or family situation or even a counseling session much more easily or freer.  Here’s the link. http://bit.ly/tt4SSU

I realize not everyone can afford these items but there are other options as well.  Bringing paper and pen is an option we all have used at one time or another.  Educating everyone around us, letting them know what we need to hear the conversation and be part of the exchange of information.  I know I want to feel part of the holiday season and I don’t want any reader feeling left out as well.  So, how about sharing your thoughts and your ideas on how other hearing impaired and deaf individuals can make it through their holiday season without feeling left out.

by Chelle George

Coping with hearing loss meant faking it, that was my only strategy back then.
I tried being hearing because I didn’t know what else to do.  There were so many conversations lost during those years and missed connections too.   It was a poor strategy.

Along came the internet and America Online.  For months, I had to call long distance to dial up so I was limited being online but oh how I loved it.  It opened up a new world for me.  This was the first place I could socialize without struggling to hear.  With the internet, I no longer felt like a social idiot.  All the words were right in front of me to see.  It was beautiful.

It took some months before our small town had local internet service and right away I signed
up.  I had unlimited internet time at long last.  I was overjoyed and spent every spare moment online, chatting, emailing and surfing the web.

After a year of playing around online, where I never had to admit I was hard of hearing, I
looked into hearing loss.  The first sites I remember finding was SHHH (Self Help for the Hard of Hearing) and ALDA.  There wasn’t much on their web sites except some basic information and a list of chapters.  The nearest one was an hour and a half away which wasn’t feasible for me.

Keeping up the search, I found the Say What Club.  I joined and learned so much from those good people.  Faking it was bad they said so I worked on being honest about my hearing loss. There was a whole world of assistive listening devices (ALD’s) out there. The phone company
provided voice carry over phones and I signed up for one. I learned about resources such as vocational rehabilitation and the disability center at my local community college.  I was not alone
when I had the Say What Club with daily emails of strategies, support or even the chance to rant or cry about our predicaments.  I had friends from all over the country who understand what it was like to be hard of hearing.

Without the Say What Club being available to me online, I would have been years behind in
technology and awareness. Most likely, I wouldn’t have the courage to be upfront about my hearing loss.

The next big miracle was texting.  It started out a teenager activity and my kids were among those who texted.  One night I had my daughter sit down and show me how to do it. She was patient and I learned.

The problem was, I seemed to be one of the few adults who texted.  How I wished my friends and  family members texted back then.  It was so much easier and quicker to communicate, in my opinion.

A few years down the road, other adults began texting.  My mom was among the first and it elevated our communication to a daily thing.  A couple times a day we would text one another back and forth.  If a whole day went by without one of us texting, we text, “Everything ok?”   It was great having my mom at my finger tips and our relationship grew.

Now texting is common.  Many friends and most of my family texts.  Better yet, I had bosses
and co-workers text me.  Airlines, my tax person and my own phone company have started using texting.  Most people say yes to texting when I ask them.

My phone doesn’t ring much. Instead it buzzes with text alerts.  I discourage phone calls with most people.  A type of anxiety builds up me in every time I think about phone calls.  Even my voice mail tells people to text me instead.  (That has gotten rid of unwanted sales calls!) I loathe phone calls.  On the flip side, my phone is near me most of the day and I don’t go anywhere without it.  The buttons are worn and friendly from making words on the little screen.  I can’t go without texting anymore than I could go without email now.

I upped and moved to Salt Lake City almost three years ago, away from those small desert
towns. Surely the big city would hold a SHHH or ALDA meeting some where.  A quick internet search showed me SHHH had changed to HLAA (Hearing Loss Association of America).  There was HLAA chapter meeting once a month at the local deaf and hard of hearing center.
Not only was I lucky enough to find a meeting with others like me, I landed at the Sanderson Center for the Deaf and Hard of Hearing.

HLAA meetings were advertised on their local web site with CART (Communication
Access Real Time).  I heard about CART many years before with the Say What Club but never experienced it.  The thought of it was exciting.  It was pure joy to walk into my first meeting
for HLA at the Sanderson Center and see the whole meeting captioned. I was elated.

Every meeting I go to at the Center has CART available if I or others request it.  It was another miracle as my hearing continues to plunge.  I can go to three hours of meetings there (or a presentation) with CART and walk away energized.  Two hours in a social situation without CART or any other accommodation and I leave exhausted.  I go the Center every chance I get.  Every time I walk in the doors I feel the burden of the hearing world lift off my shoulders and I relax.

I’m glad I live when I do.  Technology has been keeping up with me.  I can’t imagine how separated from the world I would be without it.  I try imagining what life would have been like for the hard of hearing and deaf 100 years ago with no technological help… the only words that come to my mind are  isolated and lonely.   Technology has been keeping up with me.  I can’t imagine how separated from the world I would be without it.  I try imagining what life would have been like for the hard of hearing and deaf 100 years ago with no technological help… the only words that come to my mind are  isolated and lonely.   Technology continues to improve and
expand.  I’m eager to see what comes.
next.

But, Digby-pepsi, this is the story of my life:  if I can’t see your face, I can’t understand you. I might hear you making words, but I won’t necessarily know what they are.  But look me in the eye, and I’m with you all the way.

It’s a myth that one sense becomes stronger to compensate for a weakened one.  I had an otherwise intelligent friend who asked if my acute sense of smell was the result of my hearing loss.   have absolutely no idea how my nose helps my ears,  but I do know my sense of sight helps fill in what I can’t hear.   And my vision hasn’t improved because of my hearing loss – it’s not so hot either – I just depend on it more.

No matter how good my hearing aids, or how perfect the listening environment, I still need to read faces to “get” what’s being said.   All faces, all the time.  At a dinner party, I need to see the face of each person as  he or she speaks in order to remain totally involved.  If I can’t see speech, I can’t discriminate the consonants – tuck will sound like duck, which will sound like…etc.  Do you have any idea how difficult it is to convince a group of slightly inebriated people to speak one at a time, or put their hand up when they wish to speak?  I get whiplash trying to keep up, and every once in a while, I have to thump the table and say, “What the hell we talking about now?”

Most people with hearing loss, regardless of severity, depend on speechreading and other visual cues to some degree.    My 84 year-old dad just got hearing aids, and was shocked to discover that they haven’t cured his hearing loss and that he still needs to use the closed captioning on TV.

Speechreading is a skill that improves with practice. Some people may be naturally better at it, just as some people have a knack for carpentry or music.  Research suggests that women tend to be better speechreaders than men.  (I’m just saying, this is what I read.  Next week’s blog, “Man-Lips”, has more on this.)   But for all people with hearing loss, whether congenital or acquired, speechreading is a skill worth developing.

I learned from an early age, and on my own, to “read” physical clues.   Speechreading is a bit like a live-action puzzle, which we solve by asking a few questions.  What do I see on her face?  What do I hear her saying?  What’s the subject we’re discussing (context)?

Lips – Are they forming consonants or vowels?   Singular or plurals?  Accents?
Eyes – Are they narrowed, or wide? What emotions?
Teeth – Are they clenched or apart? Are they clean?  (Speechreaders really notice this!)
Facial expression – Stern? Calm? Are eyebrows up or down?
Body language – Relaxed? Hands on hips?  Arms folded? Fists clenched?
Gestures – Hands laced or stabbing the air?
Tone of voice – Sharp or giggly?

Put it all together and – eureka!   Comphrehension! This process happens almost without our realizing it, and the more we practice, the better we get.   But listening with hearing loss involves a large energy output, so after a long day of speechreading, people with hearing loss are often exhausted.

I pride myself on being a good speechreader, able to understand most people, most of the time, if they’re facing me.  What’s my worst speechreading nightmare?  A Scotsman, fresh off the boat from the highlands, talking with beer foam on his bushy mustache.  No matter how slowly the wee man might speak, I can nae understand a word!

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.

Personally, I find it insulting. A tax credit of $500? When was the last time any of these Senators purchased a hearing aid? Do they have any idea of the cost? Shame on the  U.S. Senators for not bringing forth a better piece of legislation that affects 36 million Americans.

If you believe that we should get a better piece of legislation than  S. 905, than write your State Senators NOW.

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Image by Joshua Lawton

Why Insurance Companies Don’t Pay For Hearing Aids

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

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.

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.