Lending An All Important Ear

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At first glance, Grace Mariette Agolia is your normal, hardworking sophomore at the University of Notre Dame in South Bend, IN. But the more you get to know the Massapequa native, the more you will find out just how truly unique she is. DeafTeen_021315A

Agolia was born with profound bilateral sensorineural hearing loss in October 1995. She wasn’t officially diagnosed until January 1997, as hospitals at the time did not do hearing tests for newborns.

“I was in the FDA clinical trials for this particular model of the cochlear implant, the ‘Nucleus 24,’ which is why I was able to be implanted at 20 months old instead of the usual age of at least 24 months,” said Agolia, who was surgically implanted on July 2, 1997 by Dr. Simon Parisier at Manhattan Eye, Ear and Throat Hospital.

She silently waited for 28 days until her scar healed before an audiologist turned on and programmed the cochlear implant, allowing her to hear for the first time.

“I don’t remember what it was like to be able to hear because I was so young. Although I can hear sounds, I don’t process anything auditory right away when my implant is turned on,” said Agolia, adding that her brain had to learn how to process the auditory input as sound, speech and language.

Agolia attended preschool at Nassau BOCES and kindergarten at Bowling Green, where she was mainstreamed for half of the day, and spent the other half with other deaf children who had cochlear implants or hearing aids.

After graduating from Sacred Heart Academy in Hempstead in 2013, Agolia was accepted to the University of Notre Dame. Now a sophomore, she still considers it “an absolute privilege” to be able to attend Notre Dame, and is very grateful for the opportunity.

“I am currently studying theology and I hope to attend graduate school to continue my studies in theology and research issues in Deaf Catholicism, contributing to a more nuanced theological understanding of the connections among silence, deafness, liturgical prayer and the Eucharist,” she said.

While Agolia is kept busy with her studies, she has found time for several extracurricular activities at school, including serving on the officer board for the Notre Dame Right to Life Club, teaching catechism to eighth graders on Sunday mornings at a local parish, mentoring high school students and working as a student office assistant in the university’s theology department.

It is her passion for helping others that contributed to Agolia’s scholarship reception from the Cochlear Americas Graeme Clark Scholarship Award, of which she was thrilled and incredibly grateful to have been selected.
“I’m very excited and I look forward to speaking with other teenagers like myself and to parents seeking advice for their children,” said Agolia. “I also hope to speak with some surgeons and cochlear representatives about whether I should pursue a second cochlear implant for my left ear, since I’m not sure if a second one will benefit me at this point.”

Despite being an academic scholar now, Agolia said she was not always an easy student; refusing to cooperate or make eye contact with her teachers.

“It took a lot of patience, creativity and persistence on their part, but they [my teachers] eventually broke through to me,” she said. “I’m very thankful for their incredible work because I have come so far in terms of being able to communicate effectively, progress in my academic studies and engage in community initiatives.”

In the classroom, Agolia uses certain accommodations that allow her to benefit more fully from the experience. For example, she always sits centered in the front row and uses an FM system, which consists of a teacher-worn microphone and a receiver that Agolia plugs into her cochlear implant, allowing the amplification of the teacher’s voice to be transmitted directly to the receiver in the implant.

“This system has been a lifesaver for me.  It especially helps when the teacher’s back is turned, when his or her speech is hard to understand because he or she doesn’t move his or her lips much or because of a mustache or beard,” said Agolia, who also receives extended time on tests because of auditory delay in her brain’s processing of sound.

Agolia’s speech therapy stopped after elementary school, but she continued to meet with her deaf teacher throughout high school. As for her time at college, Agolia still has the FM system and extended time for testing, but now has a new service called CART, which helps her significantly as her classes are bigger and the material is harder.

“CART is essentially real-time captioning, and a courtroom stenographer comes into my class to type out a transcript of everything spoken in class, which then appears on an iPad that I have on my desk,” said Agolia of the program, which has proven to be especially helpful for classroom discussions with fellow students.

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A diagram of how Agolia’s implant works.

Because her whole family is hearing, Agolia was not raised in the deaf community, and never learned sign language as a means of communication. However, that does not mean she is any less interested in learning more.

“I have become more interested in learning about the deaf culture and interacting with those in the deaf community, so I do hope to learn sign language at some point,” said Agolia. “In accordance with my research interests in Deaf Catholicism, I hope that I can immerse myself more from that perspective. A great example is St. Elizabeth of Hungary R.C. Church, which serves the deaf community in New York City by providing a sign language Mass.”

Back home in Massapequa, Agolia was involved in the cochlear implant community called “Hear Us, Long Island,” now known as “Hear Us Teens.” She also took part in a theater group for deaf and hard of hearing children called “No Limits,” from the age of 6 to 12.

“Being part of a theater group allowed me to express myself creatively and learn how to speak well publicly,” said Agolia, who reunited with her former cast members last summer for “Silent No More,” which allowed the cast members to speak about their individual journeys as deaf or hard of hearing people with cochlear implants or hearing aids.

Massapequa has been a very supportive community for Agolia over the years, especially in terms of the services and accommodations that the school district provided her with.

“I was welcomed in the activities and events in which I became involved, which included a Cultural Arts programs at Berner Middle School, workshops at the Massapequa Public Library, and my religious education at St. William the Abbot R.C. Church in Seaford,” said Agolia. “Sports were a significant part of my childhood as well, especially the Massapequa Soccer Club,” added Agolia, who also played T-ball, softball, basketball and volleyball. She also took gymnastics at the Massapequa Gymnastics Academy and was a dancer for several years at Dorothy’s in Bellmore and at the Dream Center in Amityville.

In regards to her audio health, Agolia checks her equipment daily. If something is broken or worn out, she contacts the company so they can send her the appropriate replacement part under her warranty coverage. She also schedules an annual mapping appointment with her audiologist at Long Island Jewish Medical Center to ensure that her computer programs on the implant are working properly.

“Every few years, I try to upgrade the external portion of my cochlear implant to keep up with the latest technology,” said Agolia. “The most difficult part is dealing with insurance companies because they don’t understand that a cochlear implant should be consistently up-to-date,” she continued, also adding that she does not expose her cochlear implant to water or magnetic sources such as showers or balloons.

Agolia’s supportive family and friends have been absolutely essential to her development as a person.

“In times of struggle with my deafness, advocating for my needs, and in times of triumph over societal limitations, I have had the undying support of my family, to which I am deeply indebted and extraordinarily grateful,” she said of her parents and siblings—older brother, James and younger sister, Faith.

Agolia’s friends, teachers, coaches and mentors over the years, who like her family, have also helped her overcome certain challenges and taught her how to think independently, be a leader and be compassionate to others.
“They taught me to encounter the world in a deeper, fuller and more personal way,” she said.

If Agolia could pass on a piece of advice to other young people like herself, she would tell them not to be scared or ashamed.

“Don’t be afraid to advocate for your needs and educate others about deafness and cochlear implant technology. I find that many people are very hesitant to ask about deafness and hearing loss because they’re afraid it might be offensive,” she said.

An empowering young woman, Agolia spoke on the topic of dignity.

“Deafness (or any disability) does not subtract in any way from the dignity of a human person, so don’t be ashamed of your hearing device.  I’ve learned to embrace my deafness as part of who I am—not as the totality of my identity, but as a part of me that informs my worldview, experiences and perspectives,” she said.

For Agolia, it’s not about overcoming deafness, but overcoming the challenges associated with it. While her implant is not a cure, it’s an incredible tool that enables her to communicate.

“Communication is such a fundamental part of life. Without that capacity to interact with other human beings, loneliness ensues, and we are left alone with our limitations,” she said.

On Feb. 27, Agolia will be giving a talk called, “Deaf Child Area: Reconciling the Worlds of Silence and Sound.” The discussion will be livestreamed on the university’s website at www.tedx2015.nd.edu/and subsequently posted to YouTube.

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Jennifer Fauci is the managing editor of Long Island Weekly, Boulevard and Anton Media Group’s local magazines. Her passion for literature, travel and the arts lend to the unique content in her publications. In her time at Anton, she has received first place in the Folio Awards, second place for the NYPA awards and is the recipient of three PCLI awards.

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