By Tiffany Geigel
As told to Jennifer Clopton
I’ve always known I was different, but growing up, I honestly didn’t think much about my condition. I was born with Jarcho-Levin Syndrome (JLS). This rare, genetic, bone disorder caused my spine to never fully straighten. It’s curved in the shape of the letter ‘C,’ and my neck and torso are shorter than other people’s.
My parents were given pretty horrific scenarios for the future when I was born. First, doctors said I wouldn’t survive past the night. When I did, they said I would likely never walk, speak, or do anything for myself. They warned I could suffocate or choke while eating. For a while, my parents were traumatized, constantly worried that something could happen to me at any moment.
But eventually they decided to just take one day at a time and enjoy me for however long they could.
My mother was determined to raise me like she would any other child, and that is exactly what my family did. I hit every developmental milestone I was supposed to and when I was three, I started taking dance classes with other children in my Brooklyn, New York neighborhood.
My passion for dancing grew steadily, and I became more and more determined to develop my talent and technique. By the time I was a teenager, my teacher said I had become a talented and beautiful dancer. But we understood that I didn’t look like the kind of dancer the ballet world wanted. So I continued to dance and compete in dance competitions and I enrolled in college.
As I got older, commuting around New York City became extremely difficult because whenever I walk the streets of New York, I face an onslaught of ridicule and bullying. I’ve been called a monster, an alien and a reject. People laugh, point, stare and make fun of me. They take photos and videos and say they need to show their friends. I’ve even seen people make a cross over themselves like they are protecting themselves from me. Social media is even crueler. People write that I should kill myself. That I don’t look human. That my parents should never have had me and call me an example of why natural selection exists.
You never get used to this level of cruelty. But you do learn to carry on.
Eventually, my dance teacher unknowingly helped me find my purpose. I was studying business in college when she first asked me to become a teacher at her studio. She changed my life by giving me that job. I transferred schools, changed my major and got my degree in dance.
Then in 2009, I went on So You Think You Can Dance to showcase what I could do. Though I didn’t end up winning the competition, I did catch the eye of Heidi Latsky, the head of a New York-based company for dancers with disabilities. I joined the company in 2014, and now at the age of 33, I perform regularly as one of their principal dancers.
Being part of this extraordinary company has propelled me into the spotlight. My photo has been on billboards in Times Square and it has raised my profile on social media. That comes with an increased chorus of negativity but there is so much positivity too.
Every day I hear from parents of children with JLS wanting to know how I was raised and got to where I am today. Because even in 2018, parents are still being given the same horrific prognoses for their children with JLS.
I am a rarity because I am so physically active and independent but I am also proof of what is possible when you carry on. Parents of children with JLS tell me seeing me survive and work makes them feel better for their children’s future and that gives my life purpose. So while I have to deal with a lot of ignorance and insensitivity, I also see the impact I’m making and that inspires me to continue on.
So I keep going. I’m not going to sit at home and say I can’t. No matter how my body feels. No matter what someone says to me on the street. That’s not how I was raised and it’s not who I am.
I believe in saying:
And I will show you.
I believe in making it work, figuring it out, not making excuses and not taking the easy road. Just carry on - and when possible, keep on dancing.
Sometimes that’s all it takes to be an inspiration and a role model.
Tiffany Geigel is a dancer, model and advocate. She is a principal dancer with the Heidi Latsky Dance Company. The Puerto Rican native New Yorker lives in Brooklyn and has a modeling book project titled “The Beauty of Tiffany” by Asael Dror to be released in late 2018. To learn more about Tiffany, follow her on Instagram.