A Hearing Loss & Late Deafened Blog

The Holidays: Including those you love with hearing loss

In Cochlear Implants, Deafness, Hearing aids, Hearing Loss, Lip Reading, Speech Reading on November 22, 2016 at 10:51 am

by Michele Linder

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When the answer is “No.”, the holidays and all their festive gatherings can become filled with anxiety and dread.

Large gatherings are especially difficult for those of us who live with hearing loss and deafness, and contrary to what most believe, wearing hearing aids or cochlear implants doesn’t help much in groups and noisy environments . . . it’s a continual challenge.

And, if you’re purely visual in your communication — a lipreader , like me, with almost no hearing ability — it’s virtually impossible to follow conversation in a group. Your brain simply can’t keep up with the speed and the shift from person to person, and back. You become lost unless someone takes the time to help you stay on top of things. I know people with hearing loss who dread the holidays to the point where they no longer participate and have earned a reputation of being anti-social, but the opposite is usually true. They crave communicating at will, but haven’t figured out a way to do it without the help they need, and many don’t even know what to ask for, let alone how to ask for it.

I wish there was a “Group Conversation With Hearing Loss, 101” class that we could all attend with our family. First, to instruct the person with hearing loss on what to ask for. And second, to clue our family in on how they can be more mindful to include us without our constantly asking. The group/family gathering setting is by far one of the biggest ongoing challenges we face as people with hearing loss. Left on our own, we either muddle through, fake it or give up and slink off to amuse or busy ourselves . . . anything that will help ward off that feeling of being left out. It’s tough.

I’ve talked to my family about my needs in a group and they’ve said things like “Just speak up when you’re not getting what’s said.”, which tells me they have very little understanding of what hearing loss is really like. If I spoke up at every word I didn’t hear there would be no flow of conversation at all. It’s not even a matter of speaking up to say we aren’t getting what’s said — we never get it all — it’s a matter of the other people in the group being aware and generous enough to include us by adjusting their norms to accommodate those of us with different norms. In a group, people with hearing loss are totally beholden to how important it is to others to change it up for accommodation.

Look around this holiday season. That family member who’s always cleaning up, doing dishes, putting things away and busying themselves might be feeling left out. Step in to help without their asking.

Here are a few fundamental things we all know, but need reminded of. 

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Give a person with hearing loss first dibs on seating:  The best vantage point for lipreading can make all the difference. It allows the person with hearing loss to avoid backlighting and to position themselves at a distance close enough to read the speaker, though in a group the person speaking shifts, so sometimes there isn’t a sweet spot for lipreading in a group — one of the reasons we need help from others.

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Speak one-at-a-time:  Sometimes this is hard to do, given the lively and often jolly exchanges at family gatherings — jokes, laughter, moving about and acting out the stories that are being shared. 

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State what the new subject is when the subject changes:  Our brains can’t keep up with the pace of most group conversations, and by the time we finally get what the new subjects is, it’s changed to something else. We definitely need some help here.

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Eliminate as much background noise as possible:  That includes holiday music. This one often feels like a killjoy to the person with hearing loss if they have to be the one to point it out time after time.

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Eliminate obstructions for those who need to see you speak:  Everyone, even hearing people, lipread to varying degrees. Bad habits can sometimes hinder understanding for all — covering your mouth with your hand or gestures, talking with food in your mouth or while chewing, turning your head while talking.

And, pay attention to tabletop decorations that can obstruct the view.

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Providing good lighting:  Lighting is no small thing. Poor lighting wrecks lipreading skills, so think before you light those candles or turn down the lights to enjoy the sparkle and shine of the Christmas Tree.
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Here are a few of the things that I appreciate from my hearing family and friends who make an attempt to be generous in conversation.

  • When someone knows a subject is relevant and of interest to me and they notice I’m staying silent because I’m probably not following the conversation, they make a point to include me by stating what the subject is and asking for my thoughts on the issue or topic.
  • An especially considerate family member that positions themselves next to me and will keep me clued in as much as they can. I really appreciate this and wish every person in my family took a turn at this instead of just a few. Interpreting for someone with a hearing loss can be tiring too, so I’m thankful for the help and don’t become offended when the person moves on and takes a break. I always hope someone else will take over.
  • That wonderful human who speaks up on my behalf when someone turns on the music, lowers the lights or suggests an activity that I won’t be able to participate in.

Sometimes it’s enough to be among those you love and you can appreciate how everyone is enjoying themselves.  However, for me, sitting and watching everyone else talk, laugh and be merry, unable to follow the conversation because no one is taking the time to include me, has an expiration that depends on my mood. I can only sit for so long before I become uncomfortable and start to feel like an outsider. There comes a point when I have to do something else, and that’s okay. The minute it’s no longer fun, get up and remove yourself and don’t worry what others think. Your family should know this about you, and if they don’t, tell them. Explain that lipreading and the concentration it takes to follow group conversation is exhausting, but also explain what being left out feels like. Most will appreciate that you took the time to share.

Most, not all. I’ve actually heard people say, “You can always opt out of situations where you know you can’t hear, life doesn’t always revolve around you.”

We know this and are already opting out of many situations unbeknownst to those around us, but should we have to opt out of family gatherings? We know not every person in our family is going to accommodate us every time we need help, but that doesn’t mean we don’t wish we were included more often by more than the few who regularly step in to help. 

I’m the first to admit that I’m not as good as I need to be about signaling when I’m not getting what’s said, so I’ll work on me, but I can only do so much on my own. It’s often up to our family and friends to adjust right along with us as we lose more and more hearing and struggle to remain part of the group.

Who and what helps you hear in a group when the holidays roll around?

The Deaf Music Fan: Screaming Without a Sound

In Deafness, Hearing Loss, Life, music on November 15, 2016 at 3:08 pm

by Kimberly

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I have to feel music to hear it, and I mean that on every level. When I was around 12 or 13, I experienced significant hearing loss. The loss is moderately severe in my right ear and severe in my left. Due to the bullying that I was experiencing at school and among my own friends, I hid my hearing loss from everyone—family, friends, and even myself. I adapted to life and conversation without much of my hearing, and one of the ways that I coped with this was through music.

All through my teens, I would sit at the stereo for roughly 3 hours every night, feeling the headphones buzzing on my cheeks and the beat pulsing through my body. My taste in music had little to do with genres. Whether it was Hole’s “Rockstar,” Prince’s “Let’s Go Crazy,” or Jeff Buckley’s “Grace,” I was listening for the passion. I can sometimes pick out or guess at the words of a song that I first hear, but usually, it’s pretty fuzzy. The music itself all kind of blends together if I don’t listen carefully. When older people will complain, “It all just sounds like a bunch of noise to me!” I know what they mean. When you can’t hear well, music is noise. But passion has always kept me listening. If I can hear something behind the song, I will listen again and again until I truly hear the song itself.

The buzzing of the headphones against my face was essential. When someone would just play as song in a room with me, I was less interested. I needed it up against my face, vibrating, sending signals to my mind, activating my memory of how those pitches sounded. I’d taken classical piano lessons from the age of 5 up until I was 16. The transition from playing piano with perfect hearing to playing piano with hearing loss was a strange one. I could feel myself relying on the buzzing in my fingers to hear the full song that I was producing. When I finally got a driver’s license, I remember the joy of having a radio that could vibrate the steering wheel under my hands. Music was something that I could still feel.

My process at the headphones was unintentionally methodical. I would find a song that I loved and blast it several times, pressing the headphones against my face as hard as I possibly could. Only after I’d felt the song on a one-on-one level like that would I dare to pull out a lyric booklet. The second that I knew the lyrics, muffled mumbling would instantly transform into meaning. My brain would fill in the gaps that my ears had left, and I would suddenly hear every syllable distinctly. After the lyrics were down in my head, I’d still listen to the same song again and again. I’d start to hear layers and extra rhythms. I think that I actually coached myself on listening this way. Hearing became easier because I’d spent so much time concentrating on how to do it.

Music stayed pretty prominent in my life for some time. I was in choirs all through high school and college and even got a music scholarship. I worked in the summers at a record store and eventually as an actress in musicals. I was even in charge of sound on our tours! In one production, I remember having to turn the monitor on stage all of the way up and the rest of the speakers all the way down so that the other actors could hear the pitch that they needed to sing. I’d be standing in the back of the auditorium saying, “Really? You can’t hear that note? I can hear it all the way back here!” In retrospect, I was “cheating.” I could feel the note, and I was used to counting on harmonics to guide me to the tones that I was unable to hear. I fell in love with and married a guy who writes rock songs and plays in bands. He’s not only indulged but appreciated when I would point out all of the little details that he put into a song.

However, in the last decade or so, I’ve lost so many of my ties with music. When I moved into my own place for college, I no longer had the big heavy headphones, so I just stopped listening to albums. I never bothered buying an iPod with earbuds because it wouldn’t be the same. The songs were compressed—the high and low pitches removed. All of the sound around the notes, the harmonics and the vibrations that I feel in order to hear, were just gone. And those tiny earbuds would never buzz around me. The idea of listening to music on headphones in public was also deeply embarrassing to me. As a teen, my neighbor once teased me about seeing me through his window, pacing around the room, squeezing those headphones up against my face. Even in my car, listening to music became less exciting because production trends of auto-tune and oversaturated reverb muddied up the sound for me. It all “sounded like a bunch of noise to me.” Hearing my husband’s live music was the rare spot of light in a dark patch. That’s why, after we moved to a new city for my job, I was so excited when he decided to play open mics again. This happened just around the time that I had finally owned up to my hearing loss and gotten help for it. I was hearing my husband with my “new ears,” my hearing aids. It was exciting.

While out at a club, I encountered the musician Nina Diaz, hosting open mics. She would play these phenomenal sets of a couple songs and then graciously turn the mic over to a variety of musicians of varying styles and levels of experience. I was struck by her kindness but also her choice of cover songs. One night, she belted out, “Never Tear Us Apart” by INXS, singing the saxophone solo with a voice so powerful that I could feel it moving the walls. That feeling took me back to those days in my parents’ living room, playing that song over and over again and the sensation of the emotions behind the song echoing against my face. “I need some big headphones!” I told my husband, who then picked out the perfect pair for me.

Nina’s album, “The Beat is Dead,” came out a couple of weeks ago, and it has been such a positive emotional experience for me to listen to it as I used to listen to albums. While I lost my hearing at twelve or thirteen, that’s when Nina was joining her first band, Girl in a Coma. They were touring and signed to Joan Jett’s record label by her mid-teens. Three and a half years ago, Nina faced and conquered her alcohol and drug addiction and continues along the path of sobriety. Two years ago, I finally got my hearing checked and explained to everyone in my life that I’d been partly deaf all of these years. While the lives of a rock star struggling with addiction and a college professor struggling with hearing loss might sound pretty different, I sense that we’ve been through a lot of the same things—the lengthy fallout that comes after confronting demons, the shame that comes from having hidden something for so long, and the burden of being an accomplished person who’s struggling when everyone thinks she has it made.

Recently, Nina put out a lyric video for one of the songs that hits me the hardest, “Screaming without a Sound.” It’s emotional for me because this is the first time that I’m reading the lyrics, and they’re written in the second person voice, driving home the connection that I already felt with the song. It reminds me of the years of embarrassment and self-doubt that came with hiding my hearing loss but also my attempts to try to explain that to the people in my life once I’d confronted it myself. I’ve often felt that my explanations are impossible for anyone else to understand. Screaming without a sound is something that I feel pretty profoundly on a number of levels. Yet, at the same time, the fact that there’s a song out there about how I feel makes me think that I am understood after all. Maybe we all understand one another other on levels that we’re not always consciously aware of. Maybe art is what helps us make those connections. You can’t always explain it, but you can feel it.

I’m continuing to hear the layers in the songs—the way that she bends the note when she sings the word “care” in the song “Queen Beats King” or the unexpected digital bits of keyboard coming in near the end of “Trick Candle.” I get a weird kick out of discovering sounds. For most people, sound comprises music, but for me, the music itself is bringing the sound alive. In those moments with my headphones on, I feel like a part of me that’s been dead is alive again. Listening to music is a tiring process for me. People with hearing loss can all agree that listening fatigue is real. In the end, though, it’s worth the human connection. Art takes a lot of energy to create and even to consume, but it’s those moments when we make the effort to feel what others feel that allow us to transcend the senses.flourish1.pngKimberly is an Assistant Professor of English at a large university in Texas. As a former professional actress, she occasionally directs student plays. She lives with her husband and cat and enjoys cooking, music, and exploring nature.

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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.