Aug 02, 2020

How an “Invisible” Disability Changed a Local Teen’s Life – And Others – In a Positive Way

By Lori Draz and Charlotte Stant

Welcome to Teen Scene. Each month, our young authors write, in their own voice, stories that will educate and inform fellow students and parents. If you are a teen who would like to write your story, contact The Journal. We’ll help you polish it up, so don’t worry, let’s just get to sharing.

This month’s author is 17-year-old Rumson-Fair Haven Regional High School rising Senior Charlotte Stant, of Fair Haven. We met Charlotte last month as she worked with Compañeros de Comida to address the needs of Spanish-speaking Red Bank families impacted by the virus. Can you imagine starting a new group, communicating often in a second language, while wearing a mask? Try doing it with a hearing disability. Charlotte doesn’t listen to limitations; she hears her own music and dances to her own drum. Here is Charlotte’s story.

Every 3-year-old has their own version of a nightmare. Mine was Disney World. While some little girls dream of becoming a Disney princess, my mother had to physically remove me from the IMAX movie theatre because it felt like my brain might explode from the ear-splitting sounds. Imagine how you would feel if all sound had been muffled for your whole life, and then, all of a sudden, you are bombarded with noise your brain has never before processed.

Following my Disney catastrophe, I confronted another horror: trying to understand my first grade teacher. She insisted there was no good reason for me to receive accommodations in her classroom; little did she know I was missing every other word she spoke. She seemed insulted when I asked her to turn on her microphone, implying that I was demanding special treatment. One day she even accused me in front of my whole class of disrupting the other students’ learning. I had previously been able to keep my impairment invisible, but her announcement to the entire class made it inescapable.

A year prior to this public humiliation, I had been officially diagnosed with Connexin 26, a rare genetic mutation that is the cause of most bi-lateral sensorineural hearing loss and affects the GJB2 protein in the ear. My mutation is completely unpredictable. It was just discovered in 1997 and audiologists have only been able to track outcomes on a select group of patients. The doctors are unsure of how much hearing I will lose as I age, or if I will be one of the few patients who lose most of their hearing at birth and then plateau. Essentially, I only hear around 60 percent of what is said to me, and there is always a chance I could wake up tomorrow in complete silence.

The doctors warned my parents that school would always be hard for me, suggesting we “adjust our expectations and set reasonable educational goals.” That would most likely mean I couldn’t study foreign languages, but my dream was to travel the world as a language expert. This stubborn Taurus was determined to find her way around this roadblock. The doctors’ suggestions ignited my desire to overcome this challenge and maybe even find a way to use it to my advantage.

My parents decided I should learn sign language as a precautionary measure. I absolutely fell in love with this fascinating way of communicating. After so many unpleasant classroom experiences, I felt euphorically empowered. My teacher, Stephanie Burd, didn’t just teach me the signs; she taught me the importance of advocating for myself in all settings. Without her guidance, I would have become invisible, not wanting to draw attention to my disability and pretending everything was fine. Ironically, through losing my hearing, Ms. Stephanie taught me to find my voice. In June, I completed a Level 3 Sign Language Certification, one of my proudest accomplishments.

I have since become proficient in five languages, (three of which I pursued outside of school). Mastering Spanish, conversational French and even college-level Arabic has allowed me to feel in control of my disability and connected to the world. It makes me feel powerful, independent and capable. I even traveled alone to the Nicaragua border area of Costa Rica a month after my 16th birthday to complete a two-week language immersion study.

I wouldn’t say I feel lucky to be deaf, but it has fueled me to take control of my life. Most importantly, overcoming this congenital mutation has made me want to support those who are disadvantaged by something that is out of their control. I empathize with those who suffer silently. Through my work with the Mobile Mexican Consulate and my nonprofit Compañeros de Comida, I help marginalized families who are dealing with their own multiple “invisible” issues such as food insecurity and citizenship status.

It is critical that we each find a path to understand each other and advocate for ourselves. I feel like it is too easy to judge our fellow classmates. I know first-hand how it feels when people make assumptions about my behavior based on what they think they know about me. Likewise, if you have an issue that is not visible to the general public, use your voice! It is easy to judge others for not being empathetic to your struggles, but no one is a mind reader. They can’t understand what you don’t communicate.

There are literally hundreds of invisible issues that people struggle with every day and plenty of people who would benefit from kindness and support. When you walk through the hallways (hopefully) this school year, remember those dealing with imperceptible issues like abuse, neglect, negative self-image, sexual identity, poverty, mental illness, eating disorders, suicidality, self-harm, communication disorders, dyslexia and other learning disabilities. Challenge yourselves not to judge people and their behaviors. Instead ask and understand where they are coming from. And for those of you struggling, ask for help! Do not be ashamed of your affliction. Embrace it! Self-acceptance is the greatest gift, and when you stop spending your energy hiding from your differences, you will free up space to find what it is you were meant to do with your life.