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.

Out of curiosity I googled listening skills to see if I could validate the hard of hearing as good listeners. How close is it to the way we communicate? I came across the Mind Tools web page and we are right on the money. Check it out their first recommendation…

pay attention

• Look at the speaker directly.
• Put aside distracting thoughts.
• Listen to the speaker’s body language
• Refrain from side conversations when listening in a group setting.

Our deaf/hard of hearing center had a seminar last week on Alzheimer’s and Hearing Loss. Michael Bower flew in from the Seattle area and presented the above subject and also gave us a short class on non-verbal communication (body language). She told us the 3 main parts of communication are the words we say, the tone we use while saying the words and the way we look while talking. The words we use in communication weigh in at about 7%. The tone while saying those words rates 38% and the way we look while talking speaks volumes at 55%. She was trying to tell us how words don’t matter so much but someone mentioned how much harder communication is without that 7% of words. She gave us that one (her husband is hard of hearing). So body language is appears to be important to hearing people on the communication level. They probably just don’t use it as much as we do.

Next Mind Tools tells us to show that we are listening:

• Nod occasionally.
• Smile and use other facial expressions.
• Note your posture and make sure it’s open and inviting.
• Encourage the speaker to continue with small verbal comments like yes and uh-huh.

Did anyone else smile while reading this? I did. This could be instructions for “How to Bluff.” This is exactly how we fake our way through an entire conversation. It works because people keep talking to us until we mess up and respond inappropriately, then we have to back pedal. (I don’t bluff much anymore. It cheats everyone out of time.) I think I do all the above even when I’m understanding what’s being said which is why it comes so naturally for bluffing.

The next step for active listening is, provide feedback, summarize the conversation at some point to be sure you’re understanding the other person correctly. I do this but it goes something like this, “What? You’re going to pick your seat?” Then I found out the person was “going to get his keys.”

Step four is to not interrupt the speaker. Being hard of hearing, I have to interrupt now and then to find out where we are. “Wait-wait-wait! You went way too fast for me. Please start again only slower.” And the last step is to respond appropriately. We try to, it just doesn’t always work.

Even though I mess up on a few of these of suggestions, I am good as a listener. After all I know a lot of hearing people out there with bad listening skills. My boyfriend with his ADD is one of them. His thoughts come rapidly, tumbling over one another and non-stop. He interrupts me with totally off topic questions or statements or instead of listening to me, he’s listening to the people behind us in a line or at another table. It’s annoying. I tell people I have a hearing problem and he has a listening problem. And he’s not the only hearing person I know that does this.

For further reading on body language, 3 Key Elements

Assistive Listening Device symbol

I used to be an avid movie buff. I went to the theater once a week at least, and there were times when I knew almost every movie up for an Academy Award. I waited at midnight in a line to see Star Wars Episode 1. My heart broke watching The Horse Whisperer. I watched The Titanic 7 times in the theater going by myself half the time. I laughed with Jack Nicholson in As Good As It Gets and Al Pacino played a fun devil in Devil’s Advocate. The Fifth Element rocked my world so much I bought the soundtrack. You get the idea.

I watched all these movies from a small town theater in California. Thanks to the SayWhatClub, I knew to look for the ALD symbol (above). When our little town built and opened a theater, I recognized the sign right off.  I asked the ticket person what they had available. They had infra-red headphones, all I had to do was turn over my drivers license while I borrowed them. They were big padded headphones which covered the entire ear, had volume control and since my hearing loss wasn’t that bad yet, I understood about 90% of the movie with them on. It didn’t take long before the ticket people recognized me and had the headphones ready by the time I came up in the line.

Then I moved to a bigger town in Arizona, about 40,000 people and had three theaters. One theater had no ALD’s available. One theater said they had them and gave me a one sided headphone, light weight and the kind that sits just over the ear canal. I held it by two fingers with my face wrinkled up saying, “This is it?” I tried them out because it was all they had and I still wanted my movies. They didn’t work at all. The third theater had the same kind of headphone and I told them no thanks.

Without good earphones, my comprehension of dialogue in movies fell to somewhere around 60%. I struggled along with movies for about 6 months and the frustration of missing the key words, the punch line and so on, I stopped going. I waited for movies to come out on video so I would have captions. Within a year, I was out of the loop with movies. It wasn’t the same as watching them on the big screen. Over the next 8 years, I didn’t even know the actors anymore. I haven’t watched the Academy Awards since the late 90′s.

When I moved to Salt Lake City three years ago, I found out we had a theater with rear-view captioning. Excited at the possibility of movies in my life again, I went. The first movie I saw there, Avatar (not in 3-D), had me happy I lived in a big city. I kept an eye on their captioned movies and it didn’t long to figure out they rarely played first run or popular movies. In a theater of about 20 screen rooms, only one had rear-view captioning. Most of what they showed there were the movies that were bombing or children movies. I lost interest.

Recently the CaptiView grabbed my attention when our deaf and hard of hearing center had a festival in September. The Utah-CAN had a table with information on the CaptiView and even had one there to show people how it worked. They explained as theaters switched to a digital format, the cup holder device would be available. I vaguely heard about it in the past but seeing it made it more real. I found out the Cinemark theater down the street from me had it at their place. I couldn’t wait to try it out.

My first visit there I asked the ticket lady which movies were in digital format. She said they wall were. I stood there and looked over the list of movies playing, thrilled to have a choice again. My hard of hearing friend and I picked “The Big Year.” There were no captions during the previews but as soon as the movie started up, our CaptiViews lit up and started showing the dialogue. We let out little squeals of delight, clapped our hands quietly and then watched the movie. It was sensational!

CaptiView in the theater.

It worked so well the first time, I went back and tried watching The Rum Diary on it’s opening weekend. Nothing, no captions except to say that it was ready. I went out to inform the people in the ticket office. They sent a manager to me who said to wait there and she would be right back. I paced the hallway for 10 minutes with my CaptiView in hand when another manager giving an interview at one end of the hallway came to me and asked me what the problem was and I told him too. He said he would be right back. I paced the hallway for another 10 minutes when I saw captions light up. I missed twenty minutes but figured I could catch up.

Not. It was the wrong captions and didn’t match the movie. Maybe the device searched automatically after so much time until it found captions? Near tears with frustration, my boyfriend and I left the theater room. A guy standing just outside the doors handed me two free passes and they gave me my money back. It sort of made up for the sheer irritation of it all but I would have rather have seen the movie with captions.

Yesterday I went back again, with my free passes, to see the movie, Tower Heist. Surely, it would work all right since it wasn’t a brand new movie. We sat there I waited with tension through the previews. The movie started and nothing again! Damn it! I went out right away to inform management. They said they would be right back, har har. I paced a different hallway for 5 minutes checking my CaptiView every minute and nothing. I resumed pacing and the manager snuck up behind me and tapped my shoulder making me jump. She said, “It shows it working fine up there.” I looked at mine and it was displaying the captions now. I let her know I was tired of missing the beginning of movies and she patted my shoulder as I went into the theater again. The must have pushed the reset button I read about in another review of the device.

My boyfriend told me I didn’t miss much as I sat down adjusted the captions to my liking. I was not in the best frame of mind but eventually I settled in and started to laughing with rest of the people in there. Alan Alda makes a great bad guy.

I like the idea of having movies back but it’s not without irritation. How many more movies will I miss the beginning to in this process? From now on I will go earlier (my boyfriend is contantly late) and ask them as soon as I buy my ticket to please push the button before hand. Maybe the more they see me, the better they will get at the process. As I walk in they will think, “Oh no, here she comes again,” but after awhile it should all fall into routine and maybe they will like my patronage.

All Cinemarks are switching to digital format (I believe) and will have CaptiViews available. Other theater companies will follow so I encourage you all to go forth and watch a movie. Go to the theater, inquire and let’s make our presence known. John Waldo has done a lot of advocating for us so don’t let these new opportunities go by, claim them. I’m going to be a thorn in their side until they get it right.

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.

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!

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.

Oh, I’m sorry, I know how to fingerspell and sign.

No, sorry, I don’t sign, I’m hearing impaired.

I just need you to give me the “subject” and then rephrase what you said.  I’m just not catching what you are trying to tell me.

I know you heard what I said a few minutes ago. You even responded correctly. Okay,  okay, I’ll repeat it.

WOULDDD YYYOOUU LIKE-IKE TOO LOOO-UCK AAATTT A CASHAWEL OUT-FITTT OR WOULD YOUUUU LIKE-IKE TOO LOOKK AT AYYYY DRESSY OUT-FITTT?

You don’t have to exaggerate your mouth movements and you don’t have to yell.  That makes it even harder for me to understand what you’re saying. It distorts all the words.

Well, how do you know I’m YEEELLLLLING?

Did I mention I’m deaf?

Oh no, I’m soooooo sorry, but I bet you’re a great lipreader.  But wait, I can sign to you. I took one class in college 12 years ago.

Never mind! I’ll buy an outfit online.

Last Saturday night I decided to check it out.  After dinner and drinks I suggested to my husband that we hit a movie.

“Nothing will be captioned at this late hour,” he said.

“Let’s just check.  I heard they’re captioning everything.”

“Are you kidding?  No way.”

There was a theater three blocks away so we swung by to ask.  Imagine our surprise when the ticket chick produced two cool pairs of captioning glasses.  They looked a lot like these 3-D glasses, only they were black and had a small black box attached with a cord that you wear around your neck.

They came with three controlls on the side to adjust font size, distance, and language. LANGUAGE??  Yes.  They’ll be great for people who are learning another language, as well as deaf people whose first language is not English.

As someone who wears graduated trifocals, I was concerned that the glasses might not fit around my frames.  OR maybe the words would be too blurry with my sight issues since my reading field is so narrow.  Not a problem.  Because of the flexibility with font size and distance, I could see the words just fine.  I did have to fiddle with the placement of the glasses on my nose a bit to get it just right, but I could see great.

What I loved most about the glasses was that I could move the words anywhere on the screen.  This meant the words were never in the way of anything I needed to see.    Also, I could move the words under the screen.  Frankly I thought that part was awesome.  I have often wondered why they don’t put the words under the screen with open captioned and subtitled movies.  One of the biggest problems I have had with open captioned movies is when both the words and background are light, they are hard to read.  The words in the glasses were lit up similarly to rear-window type captioning, and they were red.  They never blended in with anything.   So, the words were always  visible and clear and never covered any part of the screen.  Also, because I wasn’t looking through a panel, as you do when using rear-window captioning, I could move my head around freely without losing the captions.  I really liked it.  A LOT!

Best of all, we were able to see a first run movie on a Saturday night!  This theater has been offering open captioned showings on Saturday mornings or at 10pm on week nights, and other inconvenient times for years.   I loved that I could just show up for a first-run movie and it would be captioned, and if that one was sold out, I could choose another, and that one would be captioned too!  Gosh, we almost felt like, (dare I say it?) normal folks.

Now that’s what I call equal access!

The other new type of captioning option under the USL listing is Captiview.  I haven’t tried it, but the picture below is what it looks like.  Seems similar to Rear-window, but maybe improved.   I’ve never been crazy about rear-window captions because of my sight issues and the way you need to sit in one spot after adjusting the arm.  But hey, if it means they will offer captions every time, I could live with this I think.  Word has it that all Regal and Cinemark theaters will be captioning every movie, every time nationwide by the end of 2012.    Whether your local theater installs  rear-window technology, Captiview, the new captioning glasses, or sticks with open captioned movies, this is big news!  See here for more details.  Oh– and pass the popcorn!