Ep. 5: The Journey With Self-Love: Johnathan Hornig

February 16th, 2025

Hey everyone, my name is Julia Lee, and I’m the president of Youth Global Smiles. Welcome back to another episode of Cleft Conversations.

Hello, my name is Rayka Service. I’m the Community Outreach Coordinator.

Today, we’re joined by Jonathan Hornig, who is a cleft-affected individual and an amazing advocate in the cleft community.

For those meeting you for the first time, how would you like to introduce yourself?
Well, hello, and thank you for having me. My name is Jonathan. I’m based in Kingston, New York, about two and a half hours outside of Manhattan. I was born with a unilateral cleft lip and palate. My father was born with a bilateral cleft lip and palate, and my son was also born with a bilateral cleft lip and palate. So, that’s three generations in my family impacted by cleft, without even realizing for a long time that there was a cleft community.

You represent three generations of a family impacted by cleft. What does that legacy mean to you?
It’s incredibly important. Growing up, there weren’t many resources. I’m 56 now—I was born in 1969. My father was born in 1943, and my son in 1991. Even then, there wasn’t much support. When my son was born, craniofacial clinics were just beginning, but nothing was very organized. Being part of this legacy now, especially with how educated and connected I am today, feels crucial. Back then, it was hard. I internalized my cleft as a defect—as if I was born to be fixed.

What parts of your cleft journey do you feel people don’t often see or talk about?
I wrote a piece last year called Cleft Rage. It talks about the self-loathing I grew up with and carried into adulthood. I often felt like I didn’t belong anywhere. Growing up in the 1970s, people stared at me, treated me like a monster. Some even asked things like, “What happened to you?” or commented on my appearance. I internalized all of that negativity and turned it inward. That led me down dark paths, including self-medicating with substances for many years because I hated myself.

How did these experiences impact your adult life?
I became deeply depressed. I didn’t have the language for it as a child, but as an adult, it manifested in serious ways. I ended up in a domestically violent marriage for ten years because I felt I wasn’t worthy of more. I had no real sense of identity—just stories shaped by stigma. That mental health cycle eventually led to a suicide attempt. That was the darkest point. I survived, and in 2017, it became my mission to learn how to love myself. That’s when I began to see my cleft as my superpower rather than my Achilles heel.

How has your relationship with your cleft changed over time?
Through my healing and mental health journey, I learned to practice self-love and self-care. I created a sense of belonging for myself. I found cleft communities online and couldn’t believe the resources that now exist. Connecting with people my age and older who are cleft-affected and living full lives has been incredibly healing. That sense of belonging truly brings a smile to my heart.

What inspired you to become an activist within the cleft community?
When my son was born, it was the first time I experienced unconditional love. I didn’t see his cleft; I just saw the universe in his eyes. That showed me I had love and acceptance within myself. That moment planted a seed. Years later, as I became more educated and connected with organizations like Smile Train and other facial difference groups, I realized I had found a missing part of myself. That seed grew into something powerful, almost like a forest within me.

You’ve spoken at CleftCon. Was there a moment that really stayed with you?
Being in a space with so many cleft-affected individuals and parents was incredibly healing. At my first virtual CleftCon, I spent the whole weekend crying. It was beautiful to see others’ stories reflected back at me. Later, speaking in person in Orlando and sharing my story out loud was transformative. People came up to me afterward saying, “You’re me. I’m you.” That sense of shared humanity was unforgettable. I later spoke again about being both cleft-affected and part of the LGBTQ+ community, which was a gift to bring awareness and inclusion to both spaces.

You mentioned you’re a psychotherapist. Can you talk more about your career path?
I spent years working in kitchens. It felt safe being behind the scenes. But once my child got older, I knew I needed a more sustainable career. I had dropped out of high school due to depression, but later earned my GED and then three degrees: my associate’s, bachelor’s, and master’s, all in social work. I graduated with my master’s from Fordham University and have now worked in the field for about 30 years. I’m a licensed clinical social worker in New York and work as a therapist. Helping others heal is my calling. It’s part of my advocacy and my love language.

What do you wish more people understood about the lived experience of cleft-affected individuals?
I hope people learn to look past the scar and see our humanity. Being cleft-affected isn’t just about aesthetics—it’s about mental health, learning how to eat or breathe, and enduring complex surgeries just to function biologically and emotionally. I hope my advocacy helps educate people and bring us closer together.

As both an advocate and a parent, what would you want parents of children with clefts to hear?
There is nothing wrong with your child. No one is broken. You didn’t do anything wrong. A lot of the negativity we internalize comes from stigma, not from within. We can’t control stigma, but we can control how we respond to it. Love your child and love yourself. And if cleft is the hardest thing your child faces, you are very blessed.

What advice would you give to young cleft-affected individuals listening today?
Embrace your journey with curiosity, compassion, and love. Let go of victimhood and the feeling of being “othered.” You are a miracle, here for a reason. Whether or not you discover that reason, you deserve a seat at the table. Grab it, hold on tight, and enjoy the ride.

If you had to define your journey in one word, what would it be?
Love. Learning how to love, receive love, and give love. Letting love guide my actions and living from my heart without fear of judgment. When you come from love, nothing can stop you, and sharing that love with others is the greatest gift. For any of us, cleft-affected or not, it’s hard being human. Anything else that makes us othered, whether it’s our skin color, our race, our gender, our orientation, whatever it is, people jump on that concept to other others. Unfortunately, there’s a lot of power and control out there, and we need to redirect that energy toward our own love and help spread that message, because the world deserves that. There’s so much yuckiness out there, so we deserve to be yum warriors that offer deliciousness to the world.

Thank you so much. We’ll wrap this here, but I look forward to keeping in contact with you. And again, I wish you the best of luck.