The man behind CaptionCall’s regular “Ask an Audiologist” segment, Stephen DeMari, was set on a path to advocacy for people with hearing loss at an early age—not by personal experience, but by his adopted younger sister, Janine, who was born Deaf.

Recently, we had the opportunity to learn more about how advocacy has become a way of life for DeMari.

Early Life

As an infant, Janine wasn’t responding to audio stimuli and babbling as a baby should. In the late ‘60s, diagnosing hearing loss was much different than it is now, but DeMari’s mother, Dorothea, knew something was off. Dorothea made sure Janine saw specialists and got the testing she needed for a correct diagnosis. After many doctor visits, Dorothea went to the Gebbie Clinic in Syracuse, New York, where an audiologist performed subjective behavioral testing and officially diagnosed Janine as Deaf.

Steve, Dorothea, Janine (1 year old, pre diagnosis), Joe (oldest brother) | Credit: Stephen DeMari

It was a fast and steep learning curve for DeMari’s family. As an eight-year-old, DeMari didn’t know what to do. He treated Janine the same as any eight-year-old would treat two-year-old sister. He played and goofed around with her; and like any other siblings, DeMari and Janine fought with each other too.

After Dorothea performed more research, Janine was fitted with a hearing aid that looked much different than what one does today: It was a body aid with a box harnessed to her chest with two wires that strung to her ears. Despite its bulkiness, it made a great difference for his sister. Communication with her became substantially easier. It provided enough stimulation for her to hear and understand words, allowing her to eventually speak. DeMari liked to try out Janine’s hearing aid, recognizing that the technology available to aid hearing loss was a great tool and a blessing.

Janine with her dad, Joseph (1972) Credit: Stephen DeMari

The Challenges of Hearing Loss and Deafness

The biggest challenge Janine faced was getting an education. DeMari’s mother spent time researching and educating herself to ensure Janine had the educational opportunities she needed. However, at the time, there were not many programs that helped the Deaf community. That is when Dorothea and the other parents in the Deaf community came together to advocate for an educational pathway for their children.

After countless hours of fighting the system, the Deaf community established a mainstream schooling option in their city for Deaf children. Janine got the oral rehabilitation she needed while being close to home and in a regular public school. She had interpreters in each of her other classes, allowing her to learn regular coursework through sign language.

Janine’s 10th birthday (Steve on right) Credit: Stephen DeMari

Dorothea’s advocacy paved the path of educational opportunities for Janine. She graduated high school and went on to graduate from Gallaudet University, a federally chartered private university for the education of the Deaf and hard of hearing.

Janine, however, also faced the social stigma that something was different about her. She wore a box with wires to her ears, and when people didn’t understand what that meant, many feared the unknown until they could be educated. Janine had a vibrant personality and was fortunate not to have had any especially negative experiences, apart from the glares and stares of what others perceived as different.

A Robust Career in Audiology

Schooling and Early Career

In addition to Dorothea’s advocacy, other family members also involved in the Deaf community inspired DeMari’s advocacy. Among them was a cousin who was a speech pathologist and married to an audiologist. DeMari spent time with, learned from, and volunteered with them, opening his world further to the hearing-impaired community, Deaf community, and hearing aid industry. These experiences led him to become an audiologist.

After finishing his bachelor’s degree, DeMari applied for a master’s degree in audiology at Syracuse University. DeMari’s spent his clinical fellowship year after graduation at the VA Medical Center in Long Beach, California, in 1986. During that time, he was part of a project researching and testing high-frequency audiometry on Veterans who were taking ototoxic medications. This experience helped him realize the importance of supporting and advocating for Veterans. Working at the VA also gave him real-world experience with patients, listening to their experiences and what they were exposed to in the line of duty. It sparked a lifelong love of serving those who served their country.

Early Jobs and Accomplishments

After his fellowship was over, DeMari started working for a private practice in South-Central Los Angeles, California, where he specialized in working with drug-exposed infants. This gave him another component in his career that has helped him be an even stronger advocate for people of all ages and backgrounds with hearing loss.

While working in LA, he met his now wife—who is also an audiologist—and they moved to Chicago, Illinois, where he became the manager of audiology at a private hospital. This hospital became the first in Illinois to have universal newborn hearing screening (UNHS), a screening process for newborns in the NICU to test for hearing impairments.

Lifelong Career

Sometimes, in life and a career, it is about who you know and who you meet along the way that guides your journey. For DeMari, it was no different. He was introduced to the hearing aid industry by a sales representative who was married to an audiologist at the practice where his wife worked. The representative worked for Phonak, a company looking for someone to establish and build their government services program, taking DeMari back to his days at the VA. He jumped at the position. He worked in Phonak’s government services program for just over a decade and stayed in the hearing aid manufacturing industry for more than 25 years.

All that experience, including becoming a speaker at hearing and audiology conferences, led DeMari to working at CaptionCall, a provider of captioned telephone service. He is the Director of Business Development and Education, which means he is now in charge of researching CaptionCall’s captioning technology and the technology that is coming down the pipeline.

Through his research, he has found that more than half of people who wear hearing aids are still unable to fully understand conversations on the phone because they lack the visual cues they would get while talking in person to fill in the gaps. DeMari has seen this with his mother, Dorothea, who wears hearing aids but needs the telephone captioning services of CaptionCall to communicate with her children and other loved ones.

Advocacy as a Way of Life

Advocacy has become part of who DeMari is. Some of the things he is most proud of as an advocate and audiologist don’t necessarily come from big, planned events, but rather the unplanned conversations that educate and enlighten individuals—either about their own hearing loss or hearing loss in general.

Building awareness and educating people on the hearing loss industry and hearing loss as a disability is one of his favorite parts of the job. He will constantly go out of his way to teach people, whether that is over social media, in person, or on a conference call. He thinks education coupled with improving technology is the key to breaking the perceived stigma surrounding not only hearing loss, but other disabilities as well.

Technology and the Future

DeMari is excited for what advancing technologies can do for people with hearing loss. One such thing is over-the-counter (OTC) Personal Sound Amplification Product (PSAP). They may not be as effective as one of the “big six” hearing aid brands, but if Apple, Samsung, Google, and other such companies all start making PSAPs (they cannot be called hearing aids for medical purposes), then the brand recognition will bring the conversation to the forefront of the issue. More conversation means more advocacy. Plus, these companies can help push the technology further and make it more accessible off the shelf, potentially de-stigmatizing it. Other technologies coming in the not-too-distant future include:

  • Advancements in cochlear implants and cochlear technology
  • Brain stem implants
  • Inner-ear-hair-cell regeneration
  • Speech optimization devices
  • Ear drum lens amplification
  • Neo-sensory devices

One thing to keep in mind about technology—and it may just be the biggest pain point for hearing loss—is no one perfect system is available. Hearing aids do a good job and it is the best thing we have available right now, but everyone’s hearing loss is unique to them, and what helps one person might not help another. DeMari compares hearing aids and a hearing impairment to glasses and a sight impairment. Hearing aids are designed to help a broken system in your ear, whereas glasses can immediately correct your eyesight, so they work differently. However, we can get rid of the stigma of hearing aids, as we did with glasses, if we just saw them as devices that help improve lives.

“Ask an Audiologist”

Once a month or so, across all CaptionCall’s social media, we host an “Ask an Audiologist” post or segment. DeMari is our audiologist who answers your questions. He loves to help and educate, and he can’t wait to respond to your requests. Follow us on social media to keep up to date with everything CaptionCall and hearing loss.

In the meantime, if you are experiencing hearing loss, DeMari recommends you see a professional who can give you good advice and educate you well. Hearing loss and hearing impairment are difficult to navigate alone, so find a support system of a good audiologist and others who will help you throughout your journey.

If you have hearing loss and need captioned telephone service, stay connected with family, friends, and others in your support system with CaptionCall.

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