So last night was the reading and I received positive response from the audience.  I shared it on the Connect list and now I’ll share it here on the SWC blog.  Here it is…

Hearing Aids 101

 a la Chelle George

Hearing aids aren’t called hearing miracles for a reason. Hearing aids help but they can’t reproduce true hearing. Technology is making advances but there is no cure for hearing loss. Those of us who wear hearing aids learn their limits but some hearing people around us seem to think once we pop our hearing aids in, we will understand everything. I’m here to tell you, even with our aids in we are still hard of hearing.

Sensorineural hearing loss, also called nerve deafness, is the most common type of hearing loss and it is permanent. With this kind of loss, some sounds come across at normal volume and others not all. Usually it’s low tones heard best with the higher frequencies missing. High pitches includes birds, bugs, timers, phones, kids and many women’s voices. In the alphabet many consonants are higher frequencies and vowels come across in low tones. Out of 26 letters in the alphabet, I hear five of them best; even with my hearing aids in.

Imagine going through your day hearing mostly vowels and only some consonants clearly. Many conversations are a constant puzzle to piece together. Take the sentence, “I’ve got to get my keys,” and try understanding it this way: I ot et I ee’s. For those with hearing loss, their mind races to fill in the blanks much like Wheel of Fortune with letters blanked out. Life becomes the Wheel of Fortune, only can I buy a consonant, please? The vowels aren’t as important. My hearing aids help me get a few more sounds but I still miss whole words. A busy day of ‘hearing’ can lead to exhaustion with all that concentration and mental activity.

Hearing people seem to think, “If only she would turn up the volume, she could hear.” Here it is in simple terms; volume distorts. Some sounds I hear well and some I do not. Take the word “shout” and try shouting it out. The “OW” hurts my ears coming across loud and clear but the “sh” and “t” are lost in “OW.” Shouting won’t work and neither will hearing aids with a super high volume because technology hasn’t caught up to missing frequencies.

Mechanical hearing pick ups mechanical noises better than sounds I want to hear. I can’t hear my phone ring, my cat meow, birds sing and I have trouble understanding speech but I do hear the garbage truck grind to a halt in front of my house, the banging of the garbage bin as it’s tipped over and set back down. In cars, I hear road noise better than the person sitting next to me. In restaurants I hear fans, refrigerators and soda machines, not to mention the clashing of plates and clattering of silverware far better than the person sitting across from me trying to have a conversation. This also applies to large gatherings. All I hear is the roar of the crowd which drowns out the person in front of me trying to talk.

Technology has come a long way and digital hearing aids have helped in that these noises don’t hurt my ears as much as they used to but I still can’t hear whispers, understand the television without captions nor lyrics in songs and I can’t understand what someone says from another room, even with my hearing aids in. Listening to people takes mega amounts of concentration. I use some lip reading, watch body language and facial expressions for clues and sometimes I still get stuck on a word or a whole sentence, even with the help of my hearing aids.

I don’t leave the house without my hearing aids because without them I am more lost and every little bit helps. The old analog hearing aids were much harder to wear all the time because they turned up all the noise, including those I already heard well. The newer digital ones suppress some sounds and then try to take sounds I can’t hear and turn them into sounds I can but even that program has it’s limits.

Eye glasses slip on and replace vision but hearing aids can’t do that. They help but they do not give me my hearing back. All the adjustments in the world will not replace true hearing. Please know I am tormented at my own failure to understand my native tongue, simple English. I come down hard enough on myself without others getting impatient with me. Once sounds are gone, they are gone and there is no magical cure.

*Note: Cochlear implants run along the same lines. They may hear more sounds than a hearing aid but The CI does not replicate true hearing either.  Cochlear implant people are hard of hearing, even with their CI on.

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.

36 million Americans are hearing impaired and/or deaf, yet we are still struggling to obtain captioning on television, the internet, movie theatres, broadway shows and many other places.  Within the next few weeks, I’ll be flying several planes and cruising Alaska.  However, I can bet my airline ticket that the shows and movies I will be entertained by, will not be captioned.

So, what’s a customer to do? I am a full ticket paying customer who just wants to enjoy the flight and cruise like everyone else.  I’m not deaf but watching a show is more enjoyable if I can understand what’s being said and the only way I can get the speech is through captions.  I feel as though I spend half my life advocating and the other half is spent learning about social media. I can’t help but say to myself, 36 million Americans are hearing impaired, why aren’t we all out there advocating for universal captioning?

Then again, could you imagine if we all showed up at the White House lawn to make a statement? Time to speak up.  This country has allowed the silence to take over.  The more silent we are, the less power we have to make change.  Help advocate for captioning.  How? If you have a favorite show on t.v. thats not captioned, write the producers of the show.  If your favorite show is captioned, write a letter thanking them.  Join the battle by joining CCAC http://www.ccacaptioning.org/ and get informed.

Educating yourself as a consumer is the most important thing.  We deserve it.

As a result of the wonderful collaboration between Lauren Storck, founder of CCAC http://www.ccacaptioning.org/ and Pearl Feder a member of both the SayWhatClub and CCAC, the two tweeted away on twitter, asking their followers to tweet @AARP for accessibility online for the hearing impaired and deaf AARP members.

A wonderful and supportive response from many members and several organizations including Marlee Matlin helped get a response from the AARP both to Pearl Feder on Twitter and on CCAC’s blog http://bit.ly/khRzZs

So, are you still wondering what twitter can do for you? Twitter is advocacy’s best friend.

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.

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

What this means for people like you and me is that we no longer have to miss a movie and wait for it to be released on DVD.  It also means, the movie will be available to us at any of its showings, not just the matinee at 1:00 p.m on a Wednesday afternoon.

To those of us who are hearing impaired and late deafened, ALDA has been here for us. Even though they are an all volunteer organization, they hope to one day be a major organization with a  national office representing all of us. All I can say is that ALDA has made our dream come true and taken up the battles to fight that we could not have proceeded ahead without them. And who knows, maybe, just maybe, this is the organization that will help win the battle of the unaffordable hearing aid.

Join me in congratulating ALDA and all the people who helped make theatre captioning a reality.

The King Speaks, But Not to Everyone

By John Waldo*

America’s movie-makers have frequently been at the forefront of social change, using the
unique power of film to help us see the world through the eyes of those whose
experience is unlike our own. Those efforts to expand our collective awareness
and sensitivity have frequently been recognized and honored by the Academy of Motion Picture Arts and Sciences through its annual Oscar awards. This year, for example, the Academy has honored with Best Picture nominations movies that show how the human spirit can face up to the realities of rural poverty and drug abuse, how very familiar are the
problems facing non-traditional families, and how a reluctant monarch can overcome a severe communication disability.

Ironically, though, the studios that have created those very consciousness-expanding movies have inadvertently turned away millions of Americans with a significant hearing loss. They have done so by failing to provide captions for those movies.

Movie captioning is a simple and inexpensive post-production process of converting the dialogue and other aural information like “door slamming” or “gunshot” into written
form, then displaying that information visually in synch with the movie, permitting those who can’t otherwise follow the dialogue to “hear” with their eyes.

The captioning is done by an organization affiliated with WGBH public television, and the captions are then distributed without charge to the movie theaters, either on a computer disc or as part of a digital package. The captions are then either superimposed on the movie screen for some showings, appearing like subtitles for a foreign movie and visible to everyone in the audience, or, more commonly, are displayed on personal viewing devices requested by those patrons who wish to see the captions without altering the movie-going experience for others. The cost of the captioning is negligible – an estimated $2,000 or less
for a feature-length film.

Historically, the availability of captioned movies has been limited by the fact that few
theaters have purchased and installed the equipment necessary to view the captions. That situation is changing rapidly because of a number of factors.

While the movie theaters were initially successful at arguing that the Americans with
Disabilities Act and state disability laws did not require them to provide captioning as an accommodation, that tide appears to be turning. The Ninth Circuit Court of Appeals ruled in 2010 that while the federal ADA does not required theaters to show open-captioned movies visible to the entire audience, it does require theaters to show closed-captioned movies unless the theaters can demonstrate that the cost of the captioning equipment would constitute an “undue burden.” The federal Department of Justice has strongly endorsed that result, and is in the midst of a process that could lead to a nationwide captioning requirement. The large corporate theaters owners are facing other legal threats, including a
class-action lawsuit in California and another case in the State of Washington.

Meanwhile, the long-anticipated conversion to digital projection and away from .35 mm film
is finally taking place. Displaying captions with digital equipment is considerably less expensive than displaying captions where film is used, and there are a number of promising display devices like small personal reader units and even eyeglasses that can show captions without changing movie-going experience for others in any way.

Faced with renewed pressure from the federal government and the courts, and being able to
take advantage of new opportunities, the major theater chains are beginning to respond favorably. Regal Cinemas has declared that it will soon convert all of its theaters to digital display, and that upon doing so, it will equip all of them to show captions.  Cinemark/Century has equipped all of its Washington theaters to show captions. We believe others will follow.

The obstacle now is the movie studios, particularly those which do not arrange to have their movies captioned. Of this year’s Best Picture nominees, seven have been captioned; those that have not been captioned are “The Kids Are All Right,” “Winter’s Bone” and, ironically, “The King’s Speech.”

The failure to provide captions potentially excludes a very large audience. Hearing loss is most often concentrated in the higher frequencies, and interferes with the ability to understand the softer and often not vocalized consonant sounds that shape and give meaning to speech. Oftentimes, the person with the loss is unaware of it – that person’s experience is that their hearing is fine, because they hear the voice itself at a normal volume. But because of the high-frequency loss, they lose the ability to understand.

While that loss can often be overcome in a face-to-face or small-group situation, where
body language and context provide important clues, those coping mechanisms fail in a situation like movies, where key plot turns and particularly humor occur when the context suddenly changes, and something unexpected is said.

According to a 2008 study from Johns  Hopkins University, some 7.8 percent of the adult population has a hearing loss of a magnitude that interferes with the ability to understand speech. Although not just an “old person’s problem,” hearing loss is sharply age-related, with 31% of people between 60 and 69 having a handicapping loss. Unfortunately, it is the
smaller-studio independent films like “The King’s Speech” that are least likely to be captioned, yet which have the greatest appeal to the demographic with the greatest prevalence of hearing loss. Captions may also be extremely useful for those whose primary language is not English.

Millions of us will watch the Oscars, and because television programming is captioned, we
will “hear” with our eyes everything that is being said. We would like to “hear” what the King had to say as well. The theaters are beginning to step up. We hope the studios will do their part as well.

* John Waldo is an attorney on Bainbridge Island,  Washington, whose practice focuses on advocacy for people with hearing loss.

Personally, I think it’s a combination of everything except fear of wanting to understand.  I think people just think, when you say you can’t hear them or you don’t understand them that they just cannot be bothered with having to change the way they ordinarily do things, for us to hear or understand what they are saying. I don’t like to use the words accomodating us less someone interprets it as my feeling entitled.

Too many bad experiences to go into here but today is my I hate hearing people day.

Deaf cultured individuals have sign language to communicate and use interpreters when necessary. However, what happens to those of  us who are hearing impaired, late deafened or deaf in the hearing world. 

How do others deal with the hearing world?