Category Archives: advocating

Things Learned in Two Years

I’ve thrown my passion into my job, it’s rewarding to help people who are in a tough spot with their hearing loss.  Support groups and resources have helped me great deal in the past and now I can give back. I still very much enjoy my job even when I experience setbacks, the challenges. I’ve continued to learn things, that never stops. Working with hearing loss for 40 hours a week has me wanting to set it aside when I get home. Computer use too since I use it so much at work.  Now I work at home too!

For the last few months I noticed I have missed writing here. This is my voice and not the states voice, not that there’s much difference.  The state and I are pretty much on par with each other for the hearing loss community and I have a couple of good supervisors who are supportive of my efforts.  Still, here I’m not on my ‘official’ platform.  I’m going to try to shoot for a blog piece twice a month. Today I thought I’d go over some things I’ve learned the past couple of years.

Number 1: I don’t have all the answers, but I have a large network of people to work with. I love my tribe. I’m so happy to have a network of hard of hearing friends to share knowledge with. That’s what counts in the end. Sharing with each other.

Number 2: I used to think there wasn’t as much opportunities for the hard of hearing so I wanted to create more events, more presentations and workshops. I was disappointed at first at few came but the few who came made it worthwhile. (But more on this for number 6.)

Number 3: It’s difficult to bring the hard of hearing together. Why is that? Are most of still stuck mostly in the hearing world? People take so long to seek support. Denial? The tribe has been so important to me and I’ve made some of my best friends within it. They understand me, we understand each other, so I love opportunities to hang out together. Together we can do a lot. If 20% of the population has some sort of hearing loss, why don’t more seek this out too? It’s been a valuable part of my journey.

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Some of the tribe

Number 4: Most hard of hearing people don’t advocate for themselves well. We can tell them how and what to do yet most won’t follow through. “I don’t want to be a bother.”  Or “my HR department would never do that and I can’t lose my job”. (These are hard times at the moment.)  Basically it’s fear of being different. We are the same, the only difference is we have other communication needs.  If you are afraid to ask for accommodations, then it’s best to be upfront about your hearing loss and there’s fear there too.  It’s a sort of vicious cycle. We need to learn vulnerability in order grow and gain confidence.  (See Brene Brown.)  Also, can you imagine if we all stood together? If more of us asked and introduced accommodations, we would pave a road.

Number 5: My sign language skills have improved. People say I’ve improved but it’s a slow journey.  I’m not fluent yet but I can get by now.  The reason for improvement is the 40 hours a week at work around the Deaf so I have someone to practice with. I also picked up another great hard of hearing friend who signs and she works me too. I compare my sign to my hearing loss, both have holes and I need to fill in gaps as needed with other ways…CART, slow down, lipreading.  It all combines fairly well these days.  This is a hard accomplishment for those of us who have no one to practice with.

Number 6: There are small blessings from COVID19. I was sent to work from home in mid March and I’ll be working home until the end of summer. Our program started having classes online the first week of April. We also started presentations online (Google Meet with Live Transcribe and CART too) and regular Friday morning social. We have hard of hearing assistants around the state and we were boxed in by counties. When we went online that border disappeared and we were suddenly open all over the state.  I invited out of state hard of hearing friends to participate and that opened each class and presentation up to more experiences. I’m slapping my forehead with a great big DUH! Why didn’t we do this before?! I now have more opportunities for more hard of hearing people and have helped people all over the state and then some. I’ve met other hard of hearing specialists from other states. This is the way to go. When things get back to normal (ha ha ha, whatever that may be now), we will continue online classes and combine them with in person events too.

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One of the socials

 

That’s enough for now. It felt good to share again, thank you. I’ll be back.

Always Learning, Never Stops

I miss writing, a lot.  I think I said that in my last post months ago. 

My full time job is to assist others with hearing loss, I’m the Hard of Hearing Specialist. That’s a fancy title however it doesn’t mean I have it all down, I’m still learning and experiencing new situations.

Situation #1

A few weeks ago I was required to attend a 2 day training. Being mindful I requested CART (live captioning) in advance and even helped to hook them up with the CART provider we use. It was a smooth process, the state accepts that accommodations are needed at least in my department. I went in confident and came out feeling apart from the process even with the best accommodation. The source of the problem, a workbook.

CART 1

Only I didn’t have a screen, I was reading off her laptop.

It’s not just the workbook, it started off on the wrong foot. Usually when I go into a group I introduce myself and my hearing loss but that didn’t happen this time because this workshop was about getting outside of yourself and thinking as a team instead. They instructed us to get to know the person sitting next us and introduce them instead…and go! (About 20 people.)

The room erupted into so much noise I was rattled and had to take out my hearing aids so I could focus on the person next me. It was a woman and her voice was mostly out of my range so I had to keep turning around to look at CART until I got used to lipreading her. I was back and forth so much between her and CART that I could not properly introduce her. (Next time take notes.)

She did not properly introduce me either. I was upfront about my hearing loss with her, she saw my initial struggle after the room erupted into noise and was too nice to mention it during the introduction. She did say I came from the Deaf and Hard of Hearing center but didn’t say I was hard of hearing though it was kind of obvious I was getting some special attention with CART set up right beside me.  I think she was trying to be politically correct and draw attention to me in that way. I’m not just a hearing loss but it is a map for communicating with me. (Next time go ahead and speak for myself after.)

The workshop progressed, we had new books and a workbook. It came down to writing in the workbook several times, a pause to write a bit then, “Go ahead and write while we keep talking.” That was just not possible. The first few times I rushed to get my thoughts down on the workbook, which we shared with the others at the table, only to have my thought process interrupted by voices. I hear enough to know people are talking but can’t understand what they are saying unless I’m looking, at either them or CART. So I watched CART and lost my chance to work in the notebook. After about the 3rd time I gave up trying to write in the workbook.

Teamwork was the key topic of the workshop and I was highly aware that I was not participating, it was depressing. Usually CART gave me the freedom to participate but because of a workbook I was not able to. How ironic. (Next time ask about about the training process so I’m better prepared.)

So I went home upset but it doesn’t take long for me to turn from pity party to how I can I make this better? 

  1. Show up early and explain to the training leaders what’s happening on my end, how I cannot write and listen at the same time.
  2. Introduce myself properly to the other 2 at our table and explain why I have very little written in my workbook.
  3. Don’t stress the workbook anymore. 

Which I did and felt much more relaxed on day two. I learned things, appreciated the books and someday soon maybe I’ll be able to look at the workbook more closely. 

Situation #2

I attended the HLAA convention last week. I agreed to go to a breakfast with a group of people I hardly knew and I was excited to get to get to know them better to expand my network within the hard of hearing community.  

First of all, I tend to see a lot of people I know at hearing loss conventions and I tend to want to stay up too late, soaking up being around those of my tribe. I stayed up too late the night before and then couldn’t sleep well the rest of the night. I went to the breakfast meeting over tired and you know what happens when you’re over tired with a hearing loss, right? It makes it a lot harder to concentrate, the brain doesn’t work fast enough piecing together sounds and in fact, it doesn’t work well at all. (Next time plan for more sleep, being well rested means a lot to a hard of hearing person.)

Lucy

How I felt.

There I am walking to breakfast with everyone and there’s a lot of signing going on so again I feel my confidence sliding. I’m learning sign language and I’m nowhere near fluent. When I’m around the Deaf I tend to want to slink back into the shadows and then forget everything I know about sign. Here’s strike 2 right off the bat in this situation, I’m over tired and my sign is painfully slow. Sitting down in the restaurant without my usual alertness, I sat in the worst spot possible spot, the majority of my party were back-lit against a wall of windows. Strike 3, you’re outta there! 

I think all of us were at least hard of hearing and hard of hearing people tend to vie for the same spot in restaurants, it’s a comedy to watch if in the know. So there I was trying to read sign and lips when I could, failing terribly and feeling very sorry for myself. I ate breakfast in silence watching the others and not feeling a part of the group at all. It’s not often that I feel like I’m in no-mans-land anymore, it used to be in the hearing world mainly but sometimes it’s the Deaf world too. I could not wait to get away.

Feeling frustrated with myself I went for a walk after to shake it off. Why did I not speak up for myself? When would I ever be fluent enough in sign, will I ever learn?What a sorry hard of hearing specialist I am.

After a mile or so, I forgave myself. I was over tired and if there’s a time I will break down its when I’m overtired, my brain simply doesn’t function as well. I am learning enough sign that I could follow some of the topics even if I didn’t know the why of the conversation so give myself a pat on the back for picking up a portion of it. I am improving if slowly. When I’m around other hard of hearing people I tend to start signing as I go and it comes naturally. When I around Deaf people I freeze so maybe it’s time to put myself in the path of more Deaf people at work to get myself over that hump.

 

mt fluency

I’m not quite to conversation ridge.

In the space of two weeks I had two experiences that made sure to tell me I’m as much the student as I am a teacher. It’s always going to be that way. I learn from my failures and in working through them,  which in the future build confidence even if I don’t feel it right this moment. 

Now to lighten up with some favorite pictures from the convention because I really did have a good time!

HOH tribe

welcome party

maclains workshop

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Hearing Loss Memes

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

There are a few fixes. One, we ask the other person to rephrase instead of saying “what” or “huh” a third time. We can repeat the parts we heard and ask them to repeat only the words we didn’t hear. If the other person doesn’t know we have a hearing loss, we can start being upfront about it and hopefully their agitation goes down. We can also chose to make these learning experiences for the hearing person. Hearing aids don’t correct hearing like glasses do for vision.

HL meme11

Wrong! They are called hearing ‘aids’ for a reason, otherwise they’d be called hearing miracles.

My high frequency hearing loss prevents me from hearing some consonants so conversations are like the wheel of fortune. Let the other person know that gesturing aids communication or have them use the ASL alphabet to finger spell the word.

HL meme 2

Excuse my language but this one bugs the shit out me. Yelling and shouting does not help most people with hearing loss. Plus, its in the ear (decibel damage there) and the person is not facing me. I hear with my eyes and my ears. Yelling in my ear or at me will only piss me off.  I will reach out, put both my hands on each side of your face and have you face me. That’s the correct way to communicate.

Hold everything! This might be funny to hearing people but let me tell you there are huge mistakes in communication here. You cannot talk to us like normal hearing people, it’s setting up communication for complete failure so you too need to change your ways. Number one, get my attention before you start speaking. Number two, be sure you face me so I can see what you are saying too.

For the hard of hearing people; tell the hearies in you life to face you. Be upfront about your hearing loss and your needs. Don’t just say “I’m hard of hearing,” tell people what you need to facilitate communication. Ask for a booth or a corner table at a restaurant to help block out some noise. Make sure your hearing aids have a program for noisy situations (the program should drop the noise level a few notches and have microphones on focus forward). Sit in well lit areas so you can see what’s being said even if you don’t think you lipread.

HL meme 7

Turn up your hearing aid! He said, “your money or your life,” not your money or your wife.

Um, how is he supposed to “hear” through a mask? I’m sure he uses lipreading with his remaining hearing. Volume will not help, lipreading and proper enunciation makes a big diffidence.  Does the guy with hearing loss know how hears, does his wife? Have they been properly educated about his hearing loss? Do they know hearing aids don’t replace true hearing? I’m thinking they don’t.

There is something to this one. What I heard compared to what was said is often a lot more fun! As long as we both have a sense of humor, it’s lots of fun. Go with it and laugh.  Another round please waiter!

Hearing aids pick up all kinds of noise, not just speech and it can be awful. It will make me clench my teeth so hard I can’t concentrate anymore. Maybe we had too much noise all day and we just need a break. Or we were lipreading for hours and need to rest the brain which brings me to…

HL meme 5

It is so much work and so tiring. If I’m already tired, there’s no way I can keep up so please excuse me from certain social activities at this point. I’ve learned my limit.

HL meme 12

Don’t we wish! Why did hear that and not that? I don’t know but it’s not selective hearing I promise you that. Maybe good acoustics help or the rotten acoustics wrecked my hearing. Maybe I was looking at you and maybe I wasn’t. Maybe you enunciated better than usual or your mumbled. There are so many variables when it comes to hearing loss.

HL meme9

Without captions or a hearing loop I can’t hear you in certain situations. If you want to include me and other hard of hearing people accommodate us and we’re happy to go out to those lectures, pep rallies and workshops. Otherwise you get “what” and we feel isolated while in a crowd.

Hearing loss still has too many misconceptions, there’s still a lot of educating to do and our job is to correct them. If you are hard of hearing please advocate for yourself because when you do, you educate the hearies. Figure out what is is you need to hear and stand by it, you deserve it.

Hearies, it takes too to make communication work. Do your part because we did not chose hearing loss, hearing loss chose us.

 

 

 

 

 

 

 

Working Toward Living a Spontaneous Life

 

Volunteering for hearing loss causes, attending various hard of hearing support groups and meetings plus going to conventions put me in touch with some awesome people. I learn things too!   At the SayWhatClub convention in Boise this last August I had the privilege of listening to their keynote speaker (with the help of CART and the loop) Richard Pimentel.  How fortunate I am to get around like this and then be able to write about it, sharing it with you all.  I hope this encourages you to be a part of your hearing loss community too.  

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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 w

here 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

All three hearing loss organizations in the US have their good points. 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.

tired again

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.”

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 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.

tired

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.

The presenter validated what most of feel almost daily, I’m so glad I attended.  I don’t shy away from social situations often, I even attend noisy ones without much thought although occasionally I refuse to go because I’m already tired. If I’m that tired I’ve learned from experience I won’t have the energy needed to make the best of the situation staying home instead. Knowing when not to venture out has saved me a few meltdowns.

I also know when to get CART, when ALDs will work, or not, and it’s even helped to know I’ll fail from time to time. I now analyze my bad times to find ways to make it better next time. 

Advocating for myself has made a tremendous difference in my social pleasure. I tell people up front I lipread, they need to face me or get my attention before talking. Most people are good and will comply and some very interesting conversations have followed.

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.

Advocating Within Family For Hearing Loss

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My family accommodates my hearing loss and I don’t acknowledge that enough because it’s my normal. So I want to say right now to my family, thank you for helping so much over the years. You are all wonderful people and I appreciate you. At work and in person, other hard of hearing people tell me they don’t get accommodations from their family. It makes me feel sad and then I wonder what I’ve done to make it possible in my family.

For instance; My now 3 adult kids and I played Cards Against Humanity a week or so ago. (Cards Against Humanity is the adult version of the Apples to Apples card game we played when they were little. You can look it up on Amazon and read the reviews which are funny themselves.) Each person takes turns being the ‘card czar’ which means they read out loud a black card with one, two or three blanks and the rest of the players fill in the blanks with the cards in their hands. Each kid as card czar automatically handed me the card to read when they finished reading it out loud. I didn’t make that a rule. Maybe I asked to read the card myself enough times it became a habit???

Am I just lucky? After talking to my mom it’s not luck, it’s a combination of things. She refreshed my memory which triggered other memories.

Anger once helped get my point across. Years ago we were out camping one night, sitting around the fire. It was my family, my sister’s family and our parents. We had a big fire so faces were lit and I probably only had a mild/moderate hearing loss back then so I could follow conversation filling in the gaps most of the time, except sometimes I couldn’t. I asked for a repeat and I got the dreaded “Never mind.” My mom said I became really angry and told everyone how unfair that was. I was trying to hear, I wanted to hear and that’s why I asked for a repeat. Don’t ignore me! My mom never said ‘never mind’ again and I don’t remember the rest of the family saying those words much either.

Anger is not the recommended way to get accommodations. I’m supposed to be nice when asking for help and most of the time I do. However, now and then I think anger is needed to make an impression. We can tell others how we feel but sometimes we’re not taken seriously until we blow up. That’s what happened while we were camping and it had a lasting affect.

Tears drove another point home. About ten years or so ago we had a family reunion in Colorado which required a full day of driving. At some point I took my turn at the wheel while my dad sat in the backseat directly behind me. He asked me to back off the car in front of me because a rope was flying loose on the trailer and he was afraid the load might come loose. I didn’t hear him after a few times so he reached out and smacked the back of my head to get my attention yelling out what he’d been saying. I felt my face flush and tried to keep the tears back. Here I was 30 something years old and getting smacked in the head for something that wasn’t my fault. My mom who was sitting in the front passenger seat yelled at my dad that I couldn’t hear and he needed to speak up. I could not wait to get out of the car and get out of the drivers seat. When reminiscing about it, she said, “It wasn’t the best way to get your attention but he was worried about an accident.”

Every since I was teenager I’ve had trouble hearing front to back or vice versa in the car. To top it off my dad doesn’t project his voice at all while he’s talking having learned as a kid, “kids are meant to be seen and not heard.” He grew up with that and still abides by it. As my hearing got worse, it was harder and harder to hear my dad anyway, never mind being in the car. I can’t remember him losing patience with my hearing since that incident.

Help from hearing people in my life made an impression on my kids. As typical kids, they tried getting away with things by staying just under my hearing threshhold. The older two kids tortured their little brother in the car making sure I couldn’t hear until he yelled thus making me yell at him. They loved pushing his buttons and knew how to do it quietly. The other adult passengers would tell me what really happened so I started keeping an eye on the kids with the rear view mirror. Another time my sister was with me and one of my kids started talking smack about me and of course I didn’t hear. My sister turned around and laid into them all telling them I was their mother and they had better respect me. It happened another time with my mom in pretty much the same fashion. That’s when the kids learned that not all adults had hearing loss.

Education has been the biggest key to getting other people to understand my hearing loss; what I can and can’t hear and why I hear the way I do. For 15 years I didn’t understand my own high frequency hearing loss for no doctor or audiologist took the time to explain it to me. All I knew was I couldn’t hear birds, bugs, children’s voices and some women. About 7 years ago I ran across the book Missing Words and it made a huge impact on me. Now I understood my hearing loss and why I could hear but not understand and why words had missing holes. After that, I could tell others how I heard and why. I shared the news with my family and when they understood where I was coming from they were better about facing me when talking with more patience than before. I also went on a writing spree opening this blog to try to share with others what hearing loss is like. Maybe there were other hard of hearing people who had never been told either so I wanted them to understand their hearing loss too. We aren’t alone and we can keep on sharing with each other. I haven’t stopped learning.

Persistence plays another role (within reason). Hearing people have hearing habits so it takes some time to break those habits to replace them with new ones. Most of the time it takes gentle reminders but occasionally it takes hitting the roof over a pet peeve that happens repeatedly. I hate to say it but it can take years to get those close to you to adapt totally but when it happens, it’s worth it.

Over the years I ran across hearing people who never understood hearing loss and didn’t want to learn about it either. The doors in the mind slammed shut. One of those was an ex-husband of mine who liked to use my hearing loss against me like asking me about getting a golf membership from across the house and when I didn’t answer that meant it was okay! Why bang my head against a brick wall my entire life? We had other issues as well so it was time to move on.

There was a lady I worked with who acted like hearing loss was contagious and it pained her to talk to me within 25 feet. I worked around her as much as possible doing us both a favor. There was another co-worker who thought I could hear because I did so well one on one that she insisted I answer the phone which was pure torture for me (before CaptionCall phones were available). I wound up quitting that job because I couldn’t make her understand and trying to manage the phone was stressing me out. That’s 3 bad people I’ve encountered in about 20 years. I don’t dwell on them nor do I let them color my world. Most people are good people and want to help.

That’s what has worked for me. After some personal memory mining with the help of my mom, it wasn’t the smoothest ride but it wasn’t the roughest either. It helps that I have such an open minded family who are willing to help.

How’s your family life? What’s helped you?

How to Build Self-Confidence as Hard of Hearing

Many people with hearing loss have low self-confidence. It is possible to take charge of hearing loss (instead of hearing loss ruling life) and build self-confidence up again. Begin building confidence in your personal environment. Starting small, choose something comfortable to work with and simply start.

Some of the suggestions for building confidence below require interaction with other people so make sure you have the right attitude. Make a pledge to be passive NO more and practice being assertive instead. Passive behavior is staying in the background not wanting to cause problems. Being assertive means to let people know your communication needs and ask for their help. Avoid being aggressive and demanding.

self-confidence meme

We all awesome!

Here are some suggestions to work with.

Know your hearing loss. Educate yourself about your kind of hearing loss, why? To be able to describe to other people how you hear. Once you know this, you can accurately tell others how best to talk to you. This might seem hard at first but it gets easier with time and you will become more confident asking for accommodation.

  • Please face me when talking; I hear better when sound comes straight at me.”
  • I lipread, please face me.”
  • Background noise affects my hearing; can we turn the radio off or down?”

Educate yourself about abut Assistive Listening Devices (ALDs). Which ones work better for certain situations? Which public venues have devices to use? Ask for them, use them. Try them out first by getting a loaner from DSDHH so you know what works best for you.

  • The PockeTalker for a long drive?
  • The FM system for a wireless connection at a presentation?
  • How about trying the CaptiView at the theater?

Be prepared, anticipate. Think ahead. Where are you going and what will be the listening conditions? What can you do to make it better?  With anticipation it’s easier to get around the hearing loss obstacles and in learning this, we can feel more confident about doing new things

  • Take an assistive listening system?
  • Show up early to get the best possible seating?
  • Contact someone a head of time to find out the setup and let them know what you need?

Set a small goal and achieve it. Start small, think of one thing you can do to put yourself out there again. The small successes will make you braver and you can build on your goals.

  • Go to a presentation with a personal FM system and ask the speaker to wear it. (Show up early to talk to the presenter or email ahead of time.)
  • Find a class offered for those with hearing loss and take it; speechreading, sign language, etc. In fact, get in touch with your state Deaf and Hard of Hearing Center and see what they offer.
  • Go to a captioned Broadway show. There are lots of captioned shows around the country usually in the bigger cities. If you can’t find one near you, see if you can get in touch with someone like Turner Captioning who does captioning in many cities to see if she can help you find one or get play near you captioned.

Change a habit. It will seem hard at first but it will get easier with practice. Be patient with yourself and others but keep at it. Habits are hard to break but it can be done.

  • Be upfront about your hearing loss.
  • Ask people to rephrase instead of repeat
  • Mimic the way you want others to talk to you. Articulate with a moderate pace and always face them when talking.

Say what the heck and do it anyway. We tend to hole up and stay in our comfort zones. Once in a while say “yes” I’ll do it. Get out of your comfort zone and give it a try.  If it doesn’t pan out the way you planned, think about it. What could you do next time to make it better? What might seem like a failure could be a step to a success.

  • Go out to eat at a restaurant by yourself and practice ‘hearing’ alone.
  • Go to that party you usually avoid if only for an hour. Practice being assertive with your communication needs.
  • Go to see a movie and ask for an ALD.

Be who you are and stop being someone else. We are hard of hearing and it’s time to stop pretending to be hearing. We are hard of hearing and there’s no shame in that. It only means we have to do things in a different way.

  • Stop bluffing!
  • Ask for accommodations.
  • Use whatever you need to get by without feeling guilty or feeling weird.

Volunteer. Sometimes helping others is just what we need to feel better.

  • Volunteer for a hearing loss cause. There are several organizations to volunteer with; The Hearing Loss Association of America, Association of Late Deafened adults and the SayWhatClub.
  • Volunteer with hospice services. People in hospice care are Deaf and hard of hearing too.
  • Offer your specialty services with any organization and help teach them about hearing loss along the way.

More suggestions for building self-confidence:

  • Stay away from negative people; they are just going to drag you down. Find positive people to hang out with and find a group of hard of hearing people to hang out with to find positive role models.
  • Look good because when you look good, you feel good.
  • Stand tall. Straighten up and throw your shoulders back.
  • Start an exercise plan. Feeling healthy helps you feel good too.
  • Stop comparing yourself to others. For all you know they are comparing themselves to you and finding themselves lacking too.

When you advocate for yourself you will become more confident and self-assured. In gaining confidence within your personal environment, you can take it to the next level and advocate in public. Later, you may even feel confident enough to advocate at the legislative level as well.

Remember, you catch more flies with honey than vinegar. Be gentle with communication requests and don’t give up. As Dr. Seuss said, “And will you succeed? YES! You will indeed, 98 and ¾ percent guaranteed.”  Oh the places we can go if only we’ll try.

dr seuss

HB112 at the Capitol

The Utah State Capitol

The Utah State Capitol

This morning I went to the state Capitol to show support of HB112 which went before a senate committee this morning.  This bill would make all hearing instrument specialists tell their clients about assistive listening technology available when people come in to buy hearing aids.  So many people end up paying big bucks for basic hearing aids without all the options and it drives me crazy.  This bill should help better  inform people right off the bat.  The bill passed the committee this morning and will move on to the Senate floor within the next ten days.

I’ve learned to advocate for myself personally, slowly but surely over the last 6 years especially.  That’s because I started going to local HLAA meetings and hanging out with other people who already advocated for themselves.  Now I’m learning to advocate, slowly but surely, on a bigger level and I’m learning by hanging out with these lovely ladies.

Show of support for HB112 at the Capitol this morning.

Show of support for HB112 at the Capitol this morning.

It is exciting to watch HB112 and learn the workings of getting a bill like this passed.  I’m gaining more knowledge.

Accommodations Equal Confidence

CART makes a difference in a classroom setting.

CART makes a difference in a classroom setting.

The final memoir workshop was last Thursday night. It was a two night workshop and thanks to CART (Communication Access Real-time Translation), I was fully able to participate and understand everything being said. Out of habit I found myself looking at people as they spoke only tell myself, “You can’t hear. Go back to CART girl!” At the end of the night Julia (my CART person) was packing things up while some people were talking. One of them asked me a question and because the ventilation system was roaring above I couldn’t hear so with my new habit, I turned to look at the laptop for a translation but she already put away her stenography machine. “Duh,” I thought and started to look back at the person for a repeat but Julia was already typing it out for me on her laptop which was still up. Bless her. I’m convinced CART people have huge hearts. Thank you Julia!

CART 3

Last time when I wrote about CART, I said it gives me courage to participate. That thought rolled around in around in my head this last week and wouldn’t let go because not only does CART give me courage but it also gives me confidence to participate. Without the proper accommodations I’m lost in a sea of noise.

For example, I went to a meeting last month with an FM system in place but with old, omnidirectional microphones in place which picked up every computer keyboard tap, pens and fingers tapping the table, shuffling papers and scrapping sounds as microphones slid back and forth between speakers. It was exhausting trying to pick out speech between it all. I couldn’t place the people speaking in time to lip read fully (I have a hard time locating sound) and I didn’t ask questions in fear of someone else having already asked and slowing the pace of the meeting down. After bout half and hour of this, I found myself tuning out to get away from the excess noise so I hardly participated at all in frustration and lack of confidence. Thank goodness someone there was taking the minutes. A few days later I read what went during the meeting and no one asked the question I wanted to.  Oh well, there’s always email.

Another accommodation that still works great for my moderate, severe hearing loss is the hearing loop. I hear like I remember normal hearing to be like while inside a loop with my hearing aids on. It’s a miracle feeling and I will thoroughly enjoy the loop when I can and as long as I can. Unfortunately there’s not many set up in my end of the world yet but I’m working on it! Life is easier when the proper accommodations are in place and both CART and the loop gives the hard of hearing that extra boost we need to stay in society and stay mentally active.

Without those accommodations, we withdraw from life. We come across shy, awkward, aloof and maybe as not the sharpest tool in the shed but it’s only because we can’t hear/understand what’s going around us. We can’t keep up. I’ve been thinking that many of us must have our true selves locked up inside, hidden within hearing loss and hidden from the world.

We need to break out and stop fearing so much.  There’s too much life to live.  It’s taken me years to break out and advocate for myself and now that I do, I feel a little freer. I share my adventures with you so that you know you aren’t alone, you can learn from my mistakes and make adventures of your own. Ask for accommodations yourself, build your confidence that way too and maybe together we can make the world a better place.

As a reminder…

martin luther king quote

Workshop with CART

Tonight was the first the part of the writers workshop with CART.  I meant to take a picture and forgot, darn it.  My friend Julia received the assignment without me requesting her and it turned out absolutely fabulous.  I could follow all conversation.  CART helped me feel included and gave me the courage to participate as much as I wanted to.  I talked a lot more this time and I’m sure I appeared more confident.  It sure helped knowing what’s going on!

The instructor remembered me from the last workshop, he asked about CART and I introduced Julia as my ears.  Out of habit, I often turned to the speaker only to turn right back to the notes instead.  The acoustics are still terrible in that room even though they boarded the walls to the ceiling since I was last there a few years ago.  It helped keep outside noise away but the ventilation system kicked on and off the whole time  and each time it went on, I just about lost all voices.  Thank goodness for CART, what a blessing even though I had to push and shove for it I am so thankful for the whole experience.

The workshop was on memoir writing and my writing focuses on  hearing loss.  Being able to hear everything and talk to others about writing gives me an extra boost  to get back to work on my book.  I finished the first draft of my book and need to go through it again with some additions and a big red marker.  What I need to do most of all is mark out the time to do it and guard that time zealously.

The funny thing about hearing loss is every time I bring it up, at least one person comes up with their own story and this time a man who has a  brother (I think, a relative for sure) who works up at the University and gave a couple of Ted Talks on cochlear implants.  During a short break we talked about CI’s instead of writing.  Hearing loss is a good topic and I taught 5 other people about CART tonight not including the staff which took place weeks before.  I love life.

Thank you Julia!  This is an older picture of her doing CART for an HLAA meeting.

Thank you Julia! This is a picture of her doing CART for an HLAA meeting in November I think it was.