A Hearing Loss & Late Deafened Blog

The 2016 SWC Boise Convention: Keynote Speaker

In advocating, SWC convention on October 7, 2016 at 3:10 pm

by Chelle Wyatt

Richard Pimentel was the keynote speaker for the 2016 SWC Boise, ID Convention. The convention crew was honored to have him speak and attendees were excited, especially after watching the movie Music Within depicting his life and his work toward the American’s with Disabilities Act (ADA). So much of what he said I didn’t want to paraphrase so where the text appears in blue, it’s directly quoted from his speech.

A short bio of Richard’s life can be found on the website where he works:

“Richard Pimentel was pronounced dead at birth in the delivery room. In a miraculous turn of events, he lived. His mother, who had experienced three miscarriages before his birth, left him in an orphanage, unable to come to terms with his existence. After his father’s death, he was raised by his impoverished grandmother and deemed “retarded” by a school guidance counselor. He never spoke a word until age six.
After his mother abandoned him again for a new boyfriend, Richard was left homeless and roamed from friend’s homes to his father’s old workplace, a strip bar. He lived and slept in the dressing room. During these hard times, he managed to win two national high school speech championships and was offered a college scholarship by College Bowl founder, Dr. Ben Padrow. Richard arrived on campus only to hear Dr. Padrow tell him to come back when he had “something to say.”
Richard followed Dr. Padrow’s advice and quit school. Soon after he was drafted to Vietnam, where he survived a volunteer suicide mission and became an acknowledged war hero. During his brief celebration, a stray bomb exploded in his bunker and ravaged his hearing. Not only did Richard lose his hearing, he developed tinnitus, a constant ringing in the ears. The government dismissed his dreams of college and public speaking, insisting his fate was one of insanity and rage due to his condition.”
Richard started his speech with humor, talking about his past and growing up in Portland, Oregon…. Being poor enough to be on the “relief” program (before food stamps) and getting the worst peanut butter ever which came in a can and had to be shaken with a paint shaker to be mixed. There was no money for a college education so he took up a government program called Vietnam, were a college education could be obtained after government service.
Several times we laughed as he talked about his service years leading up to a tense moment when his small unit was surrounded by the enemy on a suicide mission. Decisions had to made and they made it back to camp where they were holding funeral services for the 5 men who were expected to die.

The men were awarded a night in the beer bunker for their survival. Ten hours later a rocket was exploded on top of the beer bunker while they were still in there and the bunker imploded. “What did the implosion do? Well, the worst part of the bunker, where all the air came together, air at high velocity in a confined space, it literally blew the eyes out of the person who was there. All the rest of us got traumatic brain injuries. Even death.” It caused him to lose 70% of his hearing, losing the high frequencies, a classic ski slope loss.
After the explosion, he had to learn to walk, talk and even feed himself again-which he said he mastered almost immediately. Once he was getting around again, he wanted to go to college and the government refused.

You know what the rehab person told me? He said: Well, I can’t spend government money on sending you to college.

I said, why not?

He said, because you are deaf!

I said, what? Those counselors have no sense of humor. I said, I’m not deaf, you moron. You are talking to me.

He said, no, no, you are not totally deaf. If you were totally deaf, you’d be fine. I’d just send you to Gallaudet and make a good deaf person out of you. But you lost over half your hearing. You don’t have any hearing in the upper register. You got good hearing in the lower register. So you know what you can’t hear?

I said, what can’t I hear?

Well, you can’t hear the beginning and ends of all consonants. They are all going to sound the same to you. Your T’s and your Z’s and your V’s, they will all sound the same. He said, you know what you hear?

I said, what?

Your vowels. You hear your vowels: A, E, I, O, ooh. But not your Y’s, not even sometimes.

I said, what do I do? Do I learn Sign Language?

He said, you don’t want to learn Sign Language. The only people who do Sign Language are the deaf, and they don’t want to talk to you!

I said, well, what do I do?

Well, if you don’t hear consonants but you hear vowels, you only have two choices in your life  either learn to read lips or you move to Hawaii!”

The counselor went to explain how tinnitus would keep him from learning as well and possibly drive him crazy. His hearing loss and tinnitus would make him angry, violent and foul mouthed.
Moving on, the counselor asked him what he wanted to do in life and Richard said he wanted to be a public speaker. The counselor told him it wasn’t possible and pulled out a big book of disabilities. The book listed careers people could do with their disability, under deaf was listed “shoemaker”. The counselor moved on to traumatic brain injury and pointed the list of options out to Richard and asked do you see “professional speaker” listed? No? Then you can’t do it.
Richard decided to prove him wrong. He learned to read lips and went to college anyway. There he met Art Honeyman who had severe cerebral palsy. Most people couldn’t understand Art but Richard understood him perfectly. It turned out Arts speech lined up with Richard’s audiogram perfectly. Art had high IQ and Richard often translated for him. Then Richard wouldn’t be able to understand the person talking to them so Art would translate for him (Art could hear). “We were the strangest pair you ever saw in your life!”
Art was in wheelchair and the majority of public places were inaccessible in 1970. As an example, the college dorms and bathrooms were only accessible if Richard or someone else carried Art over their shoulder. They became good friends.
On his birthday in 1972, Art called him at 3 am to go out and celebrate with pancakes. He needed Richard to help him dress and carry him and his wheelchair down 3 flights of stairs, then push him 8 blocks to the restaurant where he had to pull him more steps to get inside. Richard figured why not and did it.
The waitress had come up and never seen anyone like Art before. She said the cruelest thing I ever heard in my life, cruelest thing I have ever heard in my life. She went to Art and she said, you are the ugliest thing I have ever seen in my life. Do you expect me to bring you food? And I don’t know how you are going to eat it, like some pig in a trough. You are going to make us all sick. So I won’t serve you. Get out. She said, I thought people like you are supposed to die at birth.
I looked at my friend, Art. He’s my best friend. What’s he going to do? How’s he going to react? Is this going to ruin his life? Remember, he’s a genius. But he’s better than a genius  he’s an evil genius! And Art turned to me, and I will tell you exactly what he said. He looked at me and said, Richard, why is she talking to you that way?! You don’t look any worse than you normally look!
Lord knows, I wanted to say it to him before, but he was my friend. I said, she’s not talking to me, she’s talking to you!

He said, there’s only two of us; how can you be sure?

I said, I think she’s trying to take me home and trying to get rid of you.

So we got into this big argument about who she wanted to date, and that made her really mad. You can either leave, she said, or I can call the police.

And I said, call ’em.

And they came. And the police said, you can either leave or you can go to jail. And Art said the words that changed my life: He said, I want to go to jail. Then he said, and Richard wants to go to jail too.

I said, no! I don’t want to go to jail. I want to get a job with a big American company.
I could have left. Art wouldn’t have blamed me. I could have just got up and said, I am not going to go, and they would have taken Art to jail. But a few things occurred to me.

First intellectual reason was, if they didn’t want me to commit civil disobedience, why then did they require me to read Thoreau?

The second intellectual reason: I didn’t go to Vietnam to protect people I don’t know to come back to find the people I care about have no rights.

The third one wasn’t intellectual, okay? How the hell are they going to fingerprint Art? This I got to see. This will be worth going to jail for.
They were jailed and appeared before the judge who found them guilty under the “Ugly Law.” Portland Oregon had an Ugly Law. Richard realized he was living in a time of disability apartheid, this seven years after the Civil Rights were enacted. Art and Richard continued going to places there weren’t welcomed and were arrested again and again.

Why? Because we believed since they were enforcing an absolutely unjust and unfair law, that if we made them do it over and over again, eventually they would have to change the law out of embarrassment. I started a mission in 1972 that ended 20 years later with the passage and eventual enforcement of the Americans with Disabilities Act. It was a tough road.
What I want to share with you is this. You know you are going to look at a lot of the ADA stuff, and you are going to see — oh, you will see Justin Dart and all of these people with wheelchairs, you are going to see people climbing up the steps of the Capitol. You are going to see such dramatic things, and you know what you might believe? You might believe by looking at that the only people who were involved in this were folks in wheelchairs, and the only issue they cared about was bathrooms, and stairs, and doors and ramps. But I want you to know, there were a lot of other people involved in the movement. People who were deaf and had been deaf for generations. And then they had people like me, the recently hard of hearing. I remember when I first started, trying to become a leader in the disability community, I was criticized for not being disabled enough. I was criticized for not being deaf enough. I was criticized for not doing Sign Language.
Richard went to share his experiences in helping people get accommodations, Deaf and otherwise. While standing up for a Deaf employee who’s supervisor wouldn’t allow her an interpreter (she read lips too well) during a disability presentation Richard was giving at a big company earned him the respect of Deaf culture.
When the disability community first started with ADA, it was a very physical disability community. Sensory was not a big deal, except for blind. They didn’t think that retardation should be included. They didn’t think that mental illness should be included, or that learning disabilities should be included. And it was the deaf community that said, we need inclusiveness.

I want you to know right up there with all the folks getting all the photography going up the steps, there were a number of folks who were Deaf  and folks like me, only hearingimpaired  who helped put the ADA together. You folks are very much a part of that.

The deaf community, along with all the other communities in the disability field, helped put the rights together. And we didn’t do this together so we would have lawsuits. You know what we did ADA for? The simplest thing in the world. We did it so that people with disabilities could have a spontaneous life. You don’t have to call ahead to know that you can get somewhere, or that someone will be able to talk to you, or that you will have another way to communicate available to you. We want what so many people without disabilities take for granted the ability to have a spontaneous life. This really is all it comes down to. And we ended up in 1990 passing that.

Look for more of Richard’s work in a program he’s working on for parents of children with disabilities. He wants them to know a disability does not define anyone and that they too can be successful in today‘s world. He will start in the Boise area, where he lives, and wants to take it nationwide.

Who you are is important. Every decision that we make about anyone should not be based on what they have but who they are. Disability is not a 4 letter word. Recognizing a disability is important so everyone knows how to advocate for themselves. Tell people in a kind, positive and creative way what you need.

His final words to us was for children with disabilities but I believe it applies to us all:

The shortest distance between where a young person with a disability is and where they want to be is a road that is illuminated by their own dreams, not by the dreams that we have for them, no matter how much we know, no matter how much we care, and no matter how much we love them. Let us enable them to find their own dreams, their own music, and their own definition of success. That’s the best advice that I could give anyone who cares about someone with a disability. We didn’t work all of these years  and I’m old now  to help ourselves. We worked to help this new generation of young people with disabilities to live a spontaneous life.

He received a standing ovation from our attendees.

Auditory Fatigue/Listener Fatigue

In advocating, Hearing Loss on September 5, 2016 at 4:09 pm

by Chelle Wyatt

I belong to three hearing loss organizations and they each have something I value (SWC is closest to my heart). I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue, also called listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

tired too

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Kathleen asks: “How can audiologists better understand and find ways to counteract the factors underlying why listeners may decide to quit participating in activities because it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding situations and withdrawing from social participation because it is too hard to listen?… It’s said we hear with our ears and listen with our brain now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes an effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things become hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.


Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat this fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set. Some people report learning speechreading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.


More links on auditory fatigue.

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.

2016 SWC Convention: The Welcome Party

In SWC convention, Uncategorized on August 28, 2016 at 11:02 pm

The SayWhatClub convention in Boise, Idaho was held at the Riverside Hotel from August 3-6th; our theme Basque-ing in Boise!  Boise has the largest Basque population in the United States and one of the planned tours was to the Basque Block.

The convention started off with a bang Wednesday evening with the Welcome Party. Many thanks to the hard work by the convention hospitality crew which was made even more special thanks to Cochlear America sponsoring the event. Below is the Cochlear America team who came to our convention.


A lot of thought and preparation went into this event.  One of the things we are particularly proud to feature at our Welcome Part was our program book which went full color this year. SWC member Michele Linder put a lot of research and careful consideration each page. We were proud to display SWC member Joyce Conser’s artwork on the front cover depicting the Boise Capitol Building. A new addition to our program book is the SWC Love page.  As a fundraiser members sent in short messages to printed, similar to yearbooks.  The Okonite Company generously printed the program for us. The whole program is available on the SWC webpages.

The program book came with the traditional SWC tote bag. Many members came together the day before to stuff the bags which featured Idaho Spud candy bars in each! Lots of Boise area information was available inside each bag among other things.

Erica Penn (chair of the convention hospitality committee, pictured below) opened the Welcome Party thanking Cochlear America, sharing convention information and inviting everyone to join the fun. Notice the red beret? In keeping with our theme, those who were a part of the convention committee wore a red, Basque styled beret that night to single them out. People were invited to ask the committee members questions about the con. CART services were provided during any speaking parts of the welcome party thanks to Gayl Hardeman who is very much a part of SWC. There was a nice layout of food including the area specialty, finger steaks.


Then the fun began.

There was a hula hoop contest and were we ever surprised at who stepped up to show off their hooping abilities.

Props were available for taking pictures too which left us with more good memories.

Erica shared her favorite picture from the Welcome Party with her story: One of our long-time members, Maurice posing with a first-time SWC convention attendee, Debbie. They knew each other outside SWC but re-connected in Boise at the Welcome Party! Lovely Maurice is wearing one of the red berets, signifying her as a volunteer for the convention.

Erica 1

Maurice and Debbie

The fun didn’t end with the welcome party. People gathered in the lobby to chat and catch up or got together in rooms. SWCers aren’t the early to bed types, even if workshops started early the next morning.

More convention posts to follow.