Healing Through Storytelling : My Hearing Loss Journey
Photo Credit: Amy Bond Photography
By Kristy Whilden
Hearing Impaired…As a hearing person do you see an issue with this phrase? I do. Impaired=Broken…Broken=Needs To Be Fixed…What do you do when something is broken and you cannot fix it? You throw it in the trash. If I can teach you one thing from this article today, please do not use this phrase. Myself and my community are not broken or trash. I used to think I was. I owned a music school for ten years. Five of my students had just won the right to play piano at the great Carnegie Hall in New York City. I was on top of the world! Or so I thought. My children started complaining that I had the music up too loud in the car and the TV volume was giving them headaches. So I went to see the doctor.
“I’m sorry Miss Whilden, you have progressive sensorineural hearing loss and will be deaf by the time you are forty.”
Excuse me, what? I couldn’t possibly be going deaf. Music was my life and part of my identity. I ended up spiraling into a massive depression and landed myself and my three children in a shelter. I was now at the bottom of the world. Useless, worthless and inept. As my world became more quiet I turned to the one silent activity I knew I loved, reading and writing. With the encouragement of my daughter Hailey I picked myself back up and fought back. I needed to be better for my children and for myself. I decided to see what deaf life was all about and embrace the change. I went back to school and obtained a degree in Deaf Studies and American Sign Language. With the help of the most incredible Deaf teachers I was catapulted into the Deaf World and man, it’s a beautiful place. Just from learning ASL and about Deaf culture my heart and mind exploded with curiosity and inspiration. My teacher allowed my daughter to learn right alongside of me even though she was only thirteen. Such a gift. But then I graduated and I looked at her thinking, what now?
Every year for my daughter’s birthday she and I would go to Broadway to see a show. I was watching the interpreter in the corner, on the ground, with no light. I looked at the man sitting next to me watching the show and I was getting increasingly frustrated because he paid the exact amount of money that I did and his eyes are on the stage getting to enjoy the costumes, lighting, emotions, dances, and natural interactions. I’m staring at a woman in a black dress. Access? Maybe. Equality? Absolutely not. The interpreter should have been standing on that stage. I learned in my research that many people in the hearing community think having an interpreter on the stage is distracting. At that moment I finally understood what the word privilege meant. Hailey had a fantastic idea of how to make a change, and we ran with it.
My Business teacher once told me to create something I would want. I envisioned this theater where when you opened the door it was equal access to the d/Deaf and hearing communities. There were interpreters at the ticket booth, concession stand, and as ushers. All eyes were on the stage because every single actor signed while voicing and if there was a d/Deaf or HOH actor who did not feel comfortable voicing for themselves then a hearing voice actor would be provided. Why can’t theatre be accessible for all? I am proud to say that I am the founder and CEO of Hands Up Silent Theatre Non-Profit. At Hands Up we encourage the d/Deaf to learn more about the performing arts and encourage the hearing to learn ASL and interact with d/Deaf peers. Our vision is to create performances for the d/Deaf and hearing to enjoy as one! Through this process I wrote a book called Dear Younger Self: From Shelter To CEO and I’m proud to say that I am now a #1 International Best Selling Author. I’m currently studying for my Masters in Fine Arts in Writing with a mission to create novels with d/Deaf/HOH characters in every genre. I’m writing a thriller that will be out in late 2024.
I have decided to no longer be afraid to be me. If that’s one thing the Deaf community has taught me, it is to not allow the stigma of hearing loss define me. One incredible friend in particular helped me to feel comfortable with my hearing loss was NASCAR hopeful and creator of the unDEAFeated brand Keenan Tully, who is from the United Kingdom but currently resides in North Carolina. When I asked him about racing in a hearing world, to explain his brand, and what it means to him he stated as follows…
“When I first started racing I realized how much of a release it was for me and how I could be equal to everyone else, look the same as everyone else, and it became such a big escape for me. The stigma surrounding hearing loss is just a myth, it's not real, it's just in your head, and is only there from misleading media and general public perception of hearing loss which is wrong! And that so many are achieving great things with a hearing loss like us, so why should you let it stop you from achieving great things too? It's just a part of who you are. You should embrace it, and love everything about yourself.
I built unDEAFeated because I wanted to show kids and teenagers who feel like hearing is a barrier in their life and stopping them from chasing their dreams that actually it can be used to drive you forward. Just like me and many many other people, you can still achieve your dreams even with a hearing loss. I motivate and inspire kids and teenagers to chase their dreams just like I am, through sharing my story and the story of others, like yours, through my podcast and social media posts, and at events to show kids and teenagers that anything is possible with a hearing loss. It's a brand that shows that hearing loss can be a positive in your life, it doesn't have to be a negative. UnDEAFeated literally means to not let your hearing loss DEAFeat you.”
And he’s right. It’s become part of my identity. I am Kristy Whilden, #1 International Bestselling Author, Founder and CEO, ASL Historian, late deafened adult moderate to severe. I communicate with ASL and spoken English and I’m proud to wear my pink and purple hearing aids even at the age of 42! Connect with us on socials to see how you can become a supporter of our companies and more importantly to learn more about the d/Deaf and HOH community.