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. 

I Want You to Know About My Hearing Loss

By Lauren McGrath

Maureen “Marzi” Wilson is an author, illustrator, and self-described introvert. As one who goes about life with the tendency to speak less and listen more, she fittingly calls her latest collection of artwork Introvert Doodles.

Marzi does not have hearing loss. “As someone with typical hearing, I believe that I and others like me have a lot to learn from those with hearing loss. We need to pay attention to their experiences,” Marzi writes.

Marzi Wilson's "I'm Deaf/Hard of Hearing" gives individuals with hearing loss a way to voice their experience.

“I’m Deaf/Hard of Hearing” is Marzi’s latest relatable masterpiece about hearing loss in her “I Want You to Know” series. “I Want You to Know” is Marzi’s honest attempt to educate her viewers about hearing loss and other conditions that can be misunderstood or stigmatized. She knows that even the most well-meaning people have misconceptions about what does not affect them firsthand.

Since Marzi does not fully know what it is like to be hard of hearing, her work represents the feelings and experiences of real people with whom she’s connected online. To gather inspiration for her “I Want You to Know” pieces, Marzi engages with individuals who are personally affected. They describe the biases that interfere with their lives and offer practical solutions to their typical counterparts. This process provides “an opportunity for them to voice their experiences—I just illustrate them,” Marzi says, humbly.

In addition to spotlighting hearing loss in “I Want You to Know,” Marzi has previously created doodles on autism, grief, and obsessive-compulsive disorder and plans to craft future illustrations about chronic illness, dyslexia, and miscarriage.

She understands her introverted nature as a creative advantage. In her words, shyness goes hand in hand with being “perceptive, creative, and thoughtful”—the very characteristics needed to compassionately capture important pieces of human experience.

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