For the first time I feel my designs actually have a deeper meaning. The work I do is not superficial. It has a deeper function: to change the lifestyles of hard of hearing people and to normalize hearing problems.
I Looked Like Me
Halloween When You Are Off-Balance
Most people love Halloween—costumes, treats, and going out late in the dark! But it can be scary, for real, for people who have balance or other sensory issues. Here are my tips for keeping your ghoul—I mean cool.
Lucky Number Seven
I would often have medical professionals, friends, and family make statements like, “If you’re going to have a brain tumor, you’re lucky it’s this kind, this is the best brain tumor to have. You’re so lucky it isn’t cancer.”
My BAHA Is My Superpower
I was born with Nager syndrome. It is a rare genetic disorder that includes conductive hearing loss, which delays speech development and affects the structure of a face.
A Journey to Better Hearing
It’s important for people with hearing loss to realize even with the help of an audiologist and the proper hearing devices, your hearing will never be the way it was before. My wife’s hearing is improved, but she still struggles to hear at times.
Broomfield, CO Girl Inspires Hearing Aid Legislation
Each device costs between $5,000 and $8,000, Ally’s mother Melissa Tumblin said, and they have to be replaced every five years. When her insurance company denied coverage of her hearing device, Tumblin formed Ear Community to help advocate for coverage of these devices to make sure no one is left unable to hear because of private insurance companies’ refusal to grant coverage.
Giving Imagery to an Invisible Disability
By Lauren McGrath
Hearing loss is not readily visualized. Scientifically, hearing loss can be observed as hair cell damage in the cochlea in the inner ear. This representation is not only an abstract concept to most, but invisible in everyday interactions.
Priscila, a hard-of-hearing artist and mother of three living in California by way of Brazil, has a different idea about how to portray hearing loss.
Introduced to drawing and sculpture by her grandmother as a child, Priscila has always been an artist, but did not until very recently—well after she developed bilateral hearing loss—give herself permission to actualize her dreams of pursuing art professionally. Her hearing loss, for which she wears a bone-anchored hearing aid (BAHA), began more than two decades ago.
Artist Priscila Soares' Abutment painting is a self-portrait that prominently shows the screw she has on her head that connects to her bone-anchored hearing aid (BAHA).
Cholesteatoma, a destructive skin growth that develops in the middle ear and typically requires removal, was the catalyst for Priscila’s hearing loss. She first received a cholesteatoma diagnosis for her right ear at 17, which she believes was the result of many ear infections as a younger child. A surgical problem rendered her profoundly deaf in her right ear following the procedure.
At 24, Priscila’s left ear showed the same condition. Though the surgery was successful, the cholesteatoma had already corroded all three bones in her middle ear, resulting in hearing loss.
Incidentally, Priscila's youngest son, Jason, 11, also has hearing loss—with no genetic connection to her own. Undaunted by his diagnosis of moderate to severe hearing loss at birth, Priscila was grateful that her own experiences would guide her care. When Jason was just a few months old, she enrolled him in a very supportive preschool for deaf and hard-of-hearing children where she worked as an aide for a time and became highly educated on pediatric hearing loss.
When he was 2 ½, Jason’s diagnosis was modified: he was profoundly deaf. Once believing her own hearing loss would be an advantage to her parenting, the drastic change left Priscila frightened. Together they’ve overcome this challenge and, today, Priscila is overjoyed that Jason, who hears with cochlear implants, is fully mainstreamed, attends school at grade level, and no longer needs the help of an interpreter or aide.
Two years ago, Priscila overcame a challenge of her own. Despite a happy family life, she felt a tremendous void. She knew that it was time to return to painting, drawing, and clay. Not only did Priscila resolve to create again, she vowed to empower people with hearing loss through art.
Priscila poses in front of one of her paintings, "Weigh," which represents the weight felt by hearing loss. Source: My Luckyears.
Priscila loves to portray the human figure and life’s journeys with tremendous emotion. She primarily uses acrylic paints, dry pastels, and a homemade clay that looks like porcelain. The work she says she’s most proud of is what she calls her Abutment painting—a self-portrait that prominently shows the screw she has on her head that connects to her BAHA. Creating this painting was freeing for Priscila because it allowed her to share such an intimate part of herself with others, something that very few people know about.
Priscila’s mission as an artist is to give imagery to an invisible disability. She seeks to show “that hearing loss doesn’t define or disempower who you are.” Instead, she says, “It gives you a unique way of experiencing the world that is yours only.”
Learn more about Priscila and view her artwork on her website, My Luckyears. Priscila is a participant in HHF's "Faces of Hearing Loss" campaign to raise awareness of hearing loss and related conditions.
New Hearing Implant Changes Life of Born This Way Star Sean McElwee
By Carol Stoll and Lauren McGrath
“It could happen” is Sean McElwee’s mantra. Born with Down syndrome, a collapsed right ear canal, and three speech disorders, Sean has drawn on his natural optimism to overcome these medical obstacles and become a television star.
At age 22, Sean was discovered and cast on A&E’s Emmy-winning TV series Born This Way, which follows the lives of seven young adults living with Down syndrome in Los Angeles. Sean’s radiant personality made him a favorite on the show, but his progressive hearing loss eventually negatively affected his on-camera communication. Deaf in his right ear since age six and now losing hearing in his left, Sean resolved to make a change. Hearing rejuvenation “could happen”—and it did happen—thanks to Sean’s positive attitude and a Cochlear Baha System.
Sean enjoying the sights and sounds of penguins at the zoo. Photo by the McElwee family.
Sean grew up going to mainstream public schools in Orange County, CA, because his mom wanted him to experience life like every other child. Throughout his childhood, he developed a plethora of hobbies and talents. Sean has been singing and dancing since age three when he joined his church and school choir. He still sings, though now mostly in the shower at home to Adam Lambert songs. Sean also loves to break dance to rap and hip-hop music, and can even put both feet behind his head. He plays many sports including basketball, baseball, flag football, swimming, and golf. He is also an expert bowler and has scored a perfect score of 300 before!
In addition to keeping up with his hobbies, starring on Born This Way, and traveling to public speaking engagements, Sean works at a trampoline park where he enjoys talking to the customers. Sean’s new Baha 5 Sound Processor has enabled him to hear clearly while continuing to work and engage in sports and the arts. The new device is convenient because it can connect directly to, and stream audio from an iPhone to his sound processor. Most notably, Sean’s girlfriend can now sit on either side of him during a conversation and he can still hear her.
Sean, now 24, takes his work very seriously and recently started his own clothing design company called Seanese (named after his own language) to further spread awareness of Down syndrome and general positive messages. “It could happen” was the slogan on his first T-shirt, and now he has added dozens of phrases, designs, and clothing items. He is especially excited that he hired a special artist to design new Halloween shirts this October with images of a mummy, skeleton, and zombie.
Beyond furthering his clothing line, Sean’s personal goals include going to all 50 states (he only has 14 left to go!), appearing on The Ellen DeGeneres Show, going to Atlantis Paradise Island in the Bahamas, and working out to develop his abdominal muscles. He hopes that in the future, “everyone will accept people with Down syndrome and see that we’re just like everyone else.”
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