The post Profiles in Hearing Loss – Gail Dolson first appeared on HLAA-CA.
]]>After graduating high school, I finished a registered nursing program during which my classmates and I tested each other’s hearing; they told me that I was missing too much, but I just thought they don’t know how-to do the test! It never occurred to me that there might actually be a problem.
I moved to San Francisco in the early part of 1968; I noticed that I was having increasing difficulty hearing others on the phone, so I went to a local ear, nose, and throat physician. After testing my hearing, he exclaimed, “Oh my goodness, your hearing is really, really bad, and you are obviously an extremely intelligent woman since you have taught yourself lip reading; otherwise, you would never had survived!”
I was fitted for hearing aids, but my hearing continued to worsen. Still, I considered myself to be a hearing person, just with some difficulty hearing. I knew no one else who was deaf. Determined to change that, I took a sign language class (signed English, using American sign language symbols).
While pursuing a degree at Sonoma State University I did a special project looking at heath care for deaf and hard of hearing people. A key part of my research involved a visit to the well-known University for the deaf, Gallaudet University in Washington, D.C., for a week-long symposium. While there I met many Deaf people who were attending college just like any hearing person. In this environment it struck me that I was living life on the fence. Was I a hearing person or a deaf person? If I was not hearing and I was not Deaf, what was I? Who was Gail?
Let me define my terms here: there is Deaf with a capital D; this is a member of the rich deaf community that embraces Deaf culture, while deaf with a lower case d means hearing that does not work.
Fortunately for me, San Francisco has a welcoming and culturally rich Deaf Community and they welcomed me even though I knew so little sign language. I began to take more classes and met more and more Deaf folks. Seven years ago, my hearing became so bad that my Kaiser audiologist told me that they could give me the strongest hearing aids available, but my hearing would worsen faster than technology could advance. Instead, they asked me to seriously consider getting a Cochlear implant.
I got my first implant at the end of 2016, and the second at the end of 2017. My cochlear implants do not make me a hearing person, nor do they give me perfect hearing. My hearing can never be perfect, but they allow me to function in a hearing world, for which I am grateful.
Once I was able to embrace my deafness, the implants also helped to introduce me to more Deaf folks, some with CI’s but most rejecting them. One thing the CI does is allow me to live in two worlds. When I use them, I can work and communicate in the hearing world. I have found that hearing folks in general have little understanding of what it means to be deaf, and how much we have to fight for equal access despite the passage of the ADA. Many hearing people believe that all they need to do is talk louder to the person. Many also believe that people with pronounced hearing loss cannot do things like drive or appreciate music and can only work at a limited number of jobs.
I am here to say a resounding NO to that. I am Deaf and I am a nurse practitioner; I know Deaf lawyers, Deaf physicians, Deaf professors, and people in so many other fields. I no longer feel sorry for Gail; I have a mission- to show hearing people and hearing parents of Deaf children that Deaf people can do most jobs: we can drive, we love music and we are closer as a group than most hearing folks.
I have talked to many parents of Deaf infants and toddlers who believe that if their child gets a cochlear implant, he or she is now a hearing person. I tell them that they are mistaken; the child is still Deaf, but with two Cochlear implants. I urge them to teach their children (ASL) American Sign Language and introduce them to Deaf people and DEAF culture or they will be robbed of this rich experience.
Recently, I spent four hours with about thirty Deaf people at a bar in San Francisco, chatting and enjoying the music. At one point I texted the DJ to turn the base and volume up so we could actually feel the vibrations in our bodies. I also suggested that if they could get a sign language interpreter for the words of the songs, more of us would come. Yes, us! I am now a proud Deaf woman. I accept that even in the hearing world I am not hearing properly. Yes, I live in two worlds now, but I am primarily part of the Deaf world; this makes me happy!
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]]>The post OTC 101 – Webinar “How can over-the-counter hearing aids help? first appeared on HLAA-CA.
]]>Join HLAA for the second event in its OTC 101: Ask the Experts Webinar Series sharing important information about over-the-counter (OTC) hearing aids.
This exciting new class of products may provide another pathway to treatment for some adults with mild-to-moderate hearing loss. In 2022, the U.S. Food and Drug Administration (FDA) finalized its rule permitting the sale of OTC hearing aids directly to consumers over 18, which are now available from a variety of retail and online stores. We’re presenting a series of four webinars through spring 2024, designed to answer your questions and clear up confusion.
The second OTC 101: Ask the Experts webinar on February 20 features Charlotte S. Yeh, M.D., chief medical officer for AARP Services, Inc. and Kelly King, Au.D., Ph.D., audiologist and program officer at the National Institute on Deafness and Other Communication Disorders (NIDCD) of the National Institutes of Health (NIH), on a panel moderated by HLAA Executive Director Barbara Kelley. Read about the panelists below and send questions in advance using the form provided.
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]]>The post Super Bowl Spotlight: Priscila Soares Scores with Representation of Children with Hearing Differences in Sports first appeared on HLAA-CA.
]]>As we come together for family, friends, and some football, the HLAA California State Association is proud to highlight an extraordinary Californian artist, Priscila Soares, who has created many beautiful mixed media art inspired by her hearing loss journey. Priscila’s latest endeavor—a new set of illustrations in her “Hearing Differences Collection” focused on sports and activities—couldn’t come at a better time!
After portraying a collection of 13 different famous children’s books stories such as “Alice in Wonderland”, ‘Winnie the Pooh” and “The Little Mermaid” with hearing devices and sign language, Priscila’s new set of illustrations for the “Hearing Differences Collection” will depict children in sports and other activities.
After being asked by a deaf track runner with cochlear implants to have more representation of children in sports, Priscila felt inspired to take on the challenge and began an illustration of a boy dressed up with a football uniform, signing “I love you” in sign language. As with many of her past illustrations, you can find 4 versions of this work: with a hearing aid, a cochlear implant, a bone anchored hearing aid and without a device. She won’t stop there with many more activities to portray on her to do list. These illustrations are a vivid reminder that everyone, regardless of their hearing ability, has the potential to achieve greatness in their chosen field.
Confronted with her own hearing loss that started at the age of 17 and her youngest son’s diagnosed deafness at birth, she embarked on a deeply personal quest to understand and express the multifaceted D/deaf and hard of hearing world through her art.
Priscila’s work celebrates the idea that our challenges do not define us; rather, they empower us. By adorning the ears of her portraits with wings in some of her work, Priscila symbolically liberates the ‘invisible disability’ of hearing loss, declaring, “This is a part of who I am, but I’m not defined by it.”
Priscila’s art and advocacy work remind us that the journey through hearing loss is rich with stories of resilience, hope, and empowerment. Through MyLuckyEars, she invites us all to honor our uniqueness and connect with others through our shared human experience.
This Super Bowl weekend, let’s celebrate not only the athletes on the field but also the artists and advocates like Priscila Soares, who inspire us to see beyond our limitations and embrace the fullness of our potential.
Want to stay up to date with Priscila? You can find her work, personal story and sign up to receive notifications of future art releases at: myluckyears.com
Follow her on Instagram: @myluckyears
Connect with her on Facebook: https://www.facebook.com/PriscilaMyLuckyears
The post Super Bowl Spotlight: Priscila Soares Scores with Representation of Children with Hearing Differences in Sports first appeared on HLAA-CA.
]]>The post Profiles in Hearing Loss – Nanci Linke-Ellis first appeared on HLAA-CA.
]]>It’s hard to imagine the world of hearing loss without the internet, texting, cell phones, and assistive listening devices. But those of us who had to deal with it had to be totally resourceful, and self-deprecating, not to mention fast on our feet to keep up.
I was four years old and living on Long Island, NY when a series of high fevers, strep, and massive doses of Streptomycin ultimately caused a hearing loss.
I was tested and found that my hearing was normal so everyone – parents, teachers and doctors forgot about it and continued on. It wasn’t detected for six more years.
I went to St. Dominic’s Catholic School in Oyster Bay (Teddy Roosevelt’s hometown) NY. It was the beginning of the baby boomer era. The teeming surge of kids were packed into classrooms that were short in supply.
In my second-grade class, there was one nun, 102 students, and no aide. Seriously. There were six long rows of squirming children, but my teacher, a religious sister whose name I can’t recall, kept strict order. Not a peep was heard. Because I was the smallest in my class, I was in the front. Unbeknownst to me, I was learning to lip-read. I excelled in class and loved the environment. Nuns had the power, that’s for sure.
And then it changed. In fifth grade, we were seated alphabetically. Because my maiden name was Linke, I was placed in the middle of a sea of students. My grades plummeted. My focus waned. I wasn’t connecting the academic dots. My worried parents and Sister St. Rita couldn’t come up with a reason for the change.
It wasn’t until Thanksgiving, that the answer surfaced. The class was assigned to draw a picture for Thanksgiving. On the Wednesday before the holiday, Sister St. Rita went up and down the rows complimenting each child on their beautiful versions of turkeys. When I handed her my picture, she was really taken aback. “This is a beautiful… turtle,” she added and promptly hung it with the 101 birds above the chalkboard. Now, it all made sense. She was on the phone before the buses pulled out.
“Your daughter is deaf!” My parents were in disbelief when they got the call. My mother was sure that my hearing was perfect. The fact that at home, the television blared whenever I watched a show or never came when they called me, did not factor into the equation.
My father was the personal manager for Andy Griffith (and was for 40 years) In 1960 when The Andy Griffith Show was about to premiere, we moved to California. They waited until after the move to take me to an audiologist and be tested.
A side note: my German grandfather, Paul, and my Austrian grandmother, Rose, moved with us. Now Rose had had a hearing problem for many years but adamantly denied it. There was a huge stigma to hearing loss then. She declared that I would only be fitted for hearing aids “over her dead body.” Well, it was the afternoon of her funeral when I picked them up! She was true to her word! Also, a Thanksgiving weekend. (second side note – I was born on Thanksgiving).
Arthur Holcombe was my audiologist who happened to be 78 years OLD (trust me, in 1960 that was ancient). Mr. Holcombe wore hearing aids himself. I think I was his youngest patient ever. He tested and diagnosed me in the moderate to profound range. I was fitted with “state of the art” hearing aids that went into the temples of my glasses. They were a silvery blue to match my new glittering life in Hollywood! (not)
I was enrolled in sixth grade at Marymount Junior School in Brentwood. It was the polar opposite of St. Dominic’s – only 20 girls per class and they all came from wealthy and famous families. On the first day, I was brought to the front of the room and looked down at what seemed to be canyons of rows while introduced as having a hearing loss. They pretty much ignored me until I came back with my new hearing aids.
Once again, I was brought to the front of the class to show off my new aids. They were ecstatic – “Nancy Linke can hear!!” they screamed. They would watch me hear new sounds and then identify what I had just heard. A light switch; a carbon copier; a car signal indicator, etc.
It was all overwhelming and wonderful. After my final adjustment, Mr. Holcombe sent me off and waved “Have a nice life!”
After that, I never met another person with hearing loss (or anyone who looked like me) until I was 43 years of age. 33 years later!
I managed to get through Providence High School, a private all-girls school in Burbank. The classes were small, and the teachers made invisible adjustments to make sure I was up to speed.
The social scene caused my parents a lot of worry. I didn’t use a telephone (not that there were cell phones) but it didn’t stop me from accepting a date over the phone from a guy that I had no clue as to who it was. My father was there to open the front door to look him over before I was sent off.
I’d leave my glasses (along with my hearing aids) at home when I went to dances and mixers. I have no idea how I survived the high school social scene intact and deaf. Thankfully, BTE hearing aids had just come out. My mother’s relief was pronounced.
College. Ohio University in Athens, Ohio was an entirely different experience. There were lines and no one-on-one help in a chaotic auditorium. Just noise and few classes remaining to take. A tsunami of college freshmen. Overhead announcements were garbled blasts of noise.
As part of the “orientation,” I had to take a hearing test (in the middle of an auditorium with 5,000 other students). My perfect speech didn’t give me away. I told them not to bother. I was hearing impaired and wore hearing aids.
Well, that landed me into speech therapy with some students who had very deaf speech. It took a few weeks before I convinced them it was a waste of both of our times and was let loose. I didn’t look deaf and act deaf until someone turned around.
My first class had 200 students in it. My mother’s advice to “let them know I couldn’t hear” seemed kind of lame given the circumstances. There were no ALDs, CART, or even note-takers. There was no ADA until it was signed into law in 1990.
Every time the professor turned his back on the class, I was lost. Beards and accents stymied me; my notes looked like swiss cheese. I couldn’t understand why my notes were so incomplete.
Remember the mantra of the times: Don’t ever use your hearing loss as an excuse.
Nanci Linke-Ellis is the 2024 President of HLAA-CA and is passionate about advocacy, learning to live with cochlear implants, and fighting for hearing loss rights.
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Each month, we will share an intimate look into a personal story about hearing loss. Hearing loss is an incredibly vulnerable disability and we want to spotlight stories in courage, persistence, and passion to know that you are not alone. If you or someone you love has a story to share, we would love to get in touch.
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]]>The post Hearing Health Matters: HLAA-LA Participates in Black Health Matters Summit first appeared on HLAA-CA.
]]>The post Hearing Health Matters: HLAA-LA Participates in Black Health Matters Summit first appeared on HLAA-CA.
]]>The post Grandma the Hearing Loss Advocate first appeared on HLAA-CA.
]]>By Katie Wright
“Mom! Mom!” my daughter’s text read. “Connor didn’t pass his hearing screening!
My heart dropped. My grandson was 4 years old, still in pre-school. He and his mom were at his physical for kindergarten. The guilt I was feeling, passing this on to him, was overwhelming. I knew this was the beginning of an arduous journey for all of us, but especially for him.
Our family rallied. We whisked him off to the John Tracy Clinic where his hearing loss was confirmed: mild to moderate loss, the pattern is called a “cookie bite.” The clinic team was wonderful; we left the appointment with programmed hearing aids on loan so Connor could start kindergarten prepared.
In retrospect, the signs had been there for a while. If he were sitting on my couch at the other end of the room, he would have to peer around the high back to understand me. There were a lot of repeated directions that the family wrote off to his being a 4-year-old. There was the TV that was a little loud when it was just him watching. But the changes were so gradual that we totally missed what was happening.
Because Connor’s loss manifested after his language development, he was termed “post-lingual.” A team of teachers and staff at the school met with my daughter and me before school started to design an Individualized Education Plan (IEP). His needs were going to be mostly classroom and teaching modifications. As we met with the team, it was obvious no one except the itinerant Deaf & Hard of Hearing (DHH) teacher knew anything at all about meeting the needs of a child with hearing loss. I realized that it was going to be up to me to advocate for him because I was living it—and for my daughter because Connor was her little son. Since that day, I haven’t ever missed an IEP meeting.
Elementary school was relatively easy. His Dodger-blue hearing aids and the FM system he and the teacher wore were a novelty. None of his classmates really cared about them. “What are those?” “They help me hear.” “Oh.” And that was it. But fifth grade was the beginning of the rebellion; he fought the FM system. It was a battle to get him to remember to charge it, let alone to bring it up to his teacher at the start of the day.
Middle school, not so easy. No one wants to be different in middle school. Every morning he was supposed to get the FM unit from the nurse’s office, take it to each teacher, pair it and then hang around at the end of class to get it back from the teacher to take it to the next class. Connor wanted to be normal; he wanted to walk into class at the last minute with his friends and leave with his friends. His hearing aids already set him apart and then with the FM unit blinking red hanging around the teacher’s neck–he was done. The FM unit stayed in the nurse’s office. He won the battle. And then, when the pandemic hit, he won the war. With Zoom and an iPad, he didn’t need his hearing aids. When school resumed, he refused to wear them. So we struck a deal: his grades had to be kept up. He hasn’t worn his hearing aids since March of 2020.
I know this is typical of a teenager with mild-to-moderate hearing loss. He’s now a sophomore; his grades aren’t suffering because of his hearing. He knows how to survive. Will he realize he needs them when he studies more advanced subjects? Hear his baseball coach across the field? Hear his friends call out to him while they’re skateboarding? Will college be different? Time will tell. Connor is a smart kid; surely he’ll know when it’s time. Fingers crossed; those of us who love him live in hope.
Katie Wright is on the Board of Directors of the Hearing Loss Association of American, California State Association. As a former teacher, she works hard to insure that all kids with hearing loss have the tools they need to be successful students.
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]]>The post How Hearing Loss Led to a Newfound Passion first appeared on HLAA-CA.
]]>I never imagined that someone else’s hearing loss would completely change my life. This happened with my first-born son. Everyone says that becoming a mother changes your life, but if you add hearing loss on top of that, the life we imagined for our family and our child flips upside down.
My son failed the newborn hearing screening in the hospital. We were told it was probably just fluid in his ears. An auditory brainstem response test two months later confirmed that he had bilateral mild to moderately severe sensorineural hearing loss. Devastated, I went through all the possibilities that could have led to his disability. Was it something I ate, something I did, or even something I said when I was pregnant? I went through the grief cycle several times over. I couldn’t talk about my son’s hearing loss with anyone other than my husband, and even that was hard. I was stuck in a state of denial. I would try desperately to prove that his disability wasn’t real – I would make loud noises in attempt to elicit responses from him. Nothing. He even slept through my cries.
A social worker from the county called to set up services for our child. I remember thinking, “who told you our son has a hearing loss? I haven’t even told my own mother yet!”. Reluctantly, I let them into my home. I realized they were only there to help. What had originally seemed like an arduous journey my family would have to navigate alone, quickly became a supportive community I never knew existed. They introduced us to other families in our area and guided us for the first three years of my son’s life. I started to feel better, but still had a hard time talking about it with anyone other than those who understood what we were going through.
I was in media sales when my son was born, selling advertising placements to local and national businesses. My job was flexible, lucrative, and came with several perks. I loved it and I was proud to be in the industry. After my son was born, however, I started to lose passion for the job. I simply did not have the bandwidth to do it all. There were weekly early intervention groups, a Deaf mentor, speech therapy, and audiology appointments all on top of working a full-time job! Moreover, my job never stopped after I left the office. After 15 years in this high-pressure industry, I called it quits. It was time for a career change. I then set out to become an audiologist.
I am now a 2nd-year audiology student at California State University, Sacramento. I have also become an ASTra Educational Parent Advocate through California Hands & Voices. I plan to work in pediatrics and educational audiology to help children and support other parents through their child’s unique journey.
My son’s hearing loss has not only been life-changing, but it has also been an absolute privilege to ride beside him in this journey. I have found my new passion.
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]]>The post Hearing Aid Insurance Coverage in Court first appeared on HLAA-CA.
]]>Most health-insurance policies exclude coverage for hearing aids. A case in federal court in Seattle may change that. In 2017, two hearing-aid users sued Kaiser in Seattle, asking that the exclusions be invalidated as violating anti-discrimination provisions in both the ACA/Affordable Care Act/Obamacare and Washington State law. Kaiser argued that the exclusion is not discriminatory because it applies both to people with disabling hearing loss and to people whose hearing loss is non-disabling. The trial court agreed and dismissed the case. The plaintiffs appealed to the Ninth Circuit Court.
The Ninth Circuit upheld the dismissal, but left the door wide open. In a case titled Schmitt v. Kaiser Foundation Health Plan of Washington, https://cdn.ca9.uscourts.gov/datastore/opinions/2020/07/14/18-35846.pdf, the Court acknowledged that prior to the adoption of the ACA, insurers were free to exclude many kinds of treatments and devices so long as the benefits the insurer chose to offer were available to everyone. But the Court said the ACA changed that. It said that a categorial exclusion of all treatment for hearing loss would likely be illegal, but that if cochlear implants, which Kaiser does cover, “adequately serve the needs of hearing disabled people as a group,” then excluding hearing aids might not be impermissible disability discrimination.
The Ninth Circuit then sent the case back to the trial court with instructions to essentially give the plaintiffs another chance to make their argument, and provided some guidance as to what kind of showing might be required. (I joined the plaintiffs’ legal team at that point). The opinion said the plaintiffs might prevail “by alleging facts showing how the needs of hearing disabled persons differ from the needs of persons whose hearing is merely impaired such that the exclusion is likely to predominately affect disabled persons.”
The critical issue in this case is determining which people with hearing loss meet the legal definition of “disabled,” and which do not. The ACA borrows the definition of “disability” from the Americans with Disabilities Act, namely, an “impairment that limits a major life activity” of the individual. Major life activities include hearing, communicating, working and learning, among others. Our argument is simply that virtually nobody gets hearing aids until and unless that person has experienced limitations to activities that are important enough to them to overcome the deterrents to hearing-aid use, not the least of which is the need to pay out of pocket for the hearing aids. Therefore, we argue that denying coverage for hearing aids almost exclusively affects people with a legally defined “disability.”
Kaiser hasn’t indicated yet that it disagrees with those facts. Rather, it offers a different definition of hearing disability based solely on the degree of impairment measured by standard hearing tests. Figuring out what the law requires is a job for judges, and are usually decided by both sides filing briefs supporting their position, and then sometimes oral argument before the judge. Those briefs are due July 7.
In many ways, this is the critical question given the size of the California market, but it can’t really be answered at this point. A decision that the exclusion violates Washington State law wouldn’t have much impact at all in California. If the case is settled, as most cases are, with Kaiser agreeing to drop the exclusion in Washington, then the settlement wouldn’t have any legal effect in California, but might persuade Kaiser that it would be less expensive to simply offer coverage in California than to fight the same battle again and hope for a different outcome.
If a federal judge in Seattle rules that the hearing-aid exclusion violates federal law, federal courts in California may or may not find the judge’s reasoning persuasive – they are not bound by that outcome. But if that were to happen and Kaiser were to appeal to the Ninth Circuit and lose, then the decision would also be the law in California since it is part of the Ninth Circuit.
John Waldo is an attorney in Houston TX whose practice focuses on advocacy for people with hearing loss. He is national Advocacy Committee Chair for the Association of Late Deafened Adults (ALDA), and consults with non-profit advocacy groups in Washington and Oregon. He can be reached at: johnfwaldo@hotmail.com
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