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.

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.

Why Insurance Companies Don’t Pay For Hearing Aids

I live within five miles of the Canada-U.S. border and enter the United States
often for vacations, overnight getaways and day trips. The questions I get from
U.S. Customs officers are routine and straightforward:

“What do you do for a living?”
“Where are you headed?”
“Are you bringing anything you plan to leave behind, such as gifts?”

I just answer those simple questions and I’m on my way within 30 seconds.
Almost always. The exception is the one time each year when I try to clear U.S.
Customs to attend the SayWhatClub convention.

Customs officers probably interview about a thousand people a day, of all
nationalities, traveling for any number of purposes. Yet once a year when I
mention that I’m attending a convention of people with hearing loss, I’m met
with a stunned look that indicates the officer has never heard that answer
before.

Why is it so hard for customs officers to understand that a person with hearing
loss would travel across the border to meet others with hearing loss? And what
harm could we possibly do? Do they think we’re plotting a silent revolution?

Last year, I faced the double challenge of trying to legally enter the United States
for a SayWhatClub convention while trying to beat long-weekend border lineups
that can extend beyond two hours in length.

I knew my plan of entry would require precision. To avoid the peak lineups, I
would cross under cover of darkness in the late evening. And to escape the
extra scrutiny that I always receive for associating with SayWhatClub members,
I would disclose my two main destinations but not my primary mission.

This would be easy, I thought. After all, my plan was to include a four-day SWC
convention in the middle of a two-week vacation that would begin with a trip to
Yellowstone National Park. When the border guard asked the purpose of my trip, I would honestly reply, “I’m going to Yellowstone and Denver.”
Those would seem like perfectly normal places for harmles tourist from the west
coast of Canada to visit, unlike St. Louis, Philadelphia or some of the other SWC
convention destinations that I had tried hopelessly to explain away in past
years.

The first part of my plan worked brilliantly. Arriving at the border at 10:25
p.m. on Friday, I found no other cars in sight. I could hardly contain my
excitement but I dutifully paused at the two stop signs in front of the customs
booth to allow my car to first be scanned and then photographed.

As I pulled up to the booth, I noticed something out of the ordinary. Unlike the dour, gray-haired men who normally staff the customs office in this highly conservative, rural American community, I was met by a fresh-faced, red-headed woman who was probably in her early twenties at best.

The questioning began as usual.
“What do you do for a living?”
“Where are you headed?”

I proudly delivered my well-rehearsed answer: “Yellowstone and Denver.”
Then came the follow-up question that ruined my plan.

“Are you meeting anyone there?” Uh oh. She got me.
“Yes, I belong to a group of people with hearing loss and we’re having a convention
in Denver for four days,” I replied honestly.

Things went downhill from there.
“What is the purpose of the convention?” she asked as she turned and
walked to the next window to look at my front license plate, her red pony-tail
bouncing behind her.

I wasn’t sure whether to answer while she had her back to me, or wait until she
returned. ”I belong to a group of people with hearing loss and we get together once
a year,” I replied, as she turned and walked back toward the window where
she first met me.

She headed directly to her computer terminal and began tapping on the keyboard
without looking up, her face half obscured by the window”What is the purpose of the convention?” she repeated, still looking at her computer screen.

Perhaps she hadn’t heard me, I thought. I stumbled through a variation of my standard answer.
“It’s a group of people with hearing loss and we get together once a year.”
“What is the purpose of the convention?” she asked again as she continued tapping at her keyboard.

I realized this was going nowhere.
“Perhaps if you’d look at me when you talk, we could understand each
other,” I thought to myself. I knew it was time to come clean and throw myself at her mercy. I paused. She looked up. Shrugging my shoulders, I threw my hands in the air and shook my
head.  “I’m sorry,” I began. (I hate that those words when discussing hearing loss, but they slip out when I’m frustrated.) “I’m hard of hearing,” I continued. “I don’t understand what you’re asking.”

“What do you do at the convention?” she said.
Aha! She was making herself more clear by rephrasing the question.
I tried to hastily recall the convention workshop agenda in the three seconds I
had before needing to come up with an acceptable reply. “We have guest speakers and we do some sightseeing,” I answered as best I could without appearing to hesitate.

“So the purpose of the convention is socializing,” she stated in verification.
“Yes,” I sighed with relief. Missionm accomplished. Finally, I understood the purpose of her questioning. This was a pleasure trip, not a business trip. I wasn’t planning to deliver a paid lecture or sell products or attend professional-development workshops. I’m just a
person with hearing loss who likes to get together with other people with hearing loss, for fun. Why is that so hard to explain?

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.

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.