Updated: Apr 11
Born with a cleft lip and palate, I didn’t meet anyone who looked like me until I was 20 years old.
No one else had to undergo countless surgeries, the first at just a few weeks old. No one else had a prominent facial scar. No one else had to wear a speech appliance every day until I was 15. No one else had as much orthodontia and oral and jaw surgery as me. No one else had dental trauma from being cut open, stitched up, torn apart, and repaired over and over again. No one I knew had a scarred face and a crooked nose. And no one else had to endure open stares and rude questions (which continue to this day). (Read more about my story.)
Not until I joined a Facebook support group called Cleft-Affected Adults did I meet others who understood. At my first meeting of Smile Train’s Cleft Community Advisory Council, I felt overcome with emotion to see others on Zoom who looked like me. Around the same time I saw a movie featuring a girl with a cleft lip.
And I realized what I had lost in my life. Representation.
Although we are far from ancient days when cleft babies were killed at birth (we were once thought to possess evil spirits), it’s rare to find a positive representation of cleft-affected people.
In the arts and media, beauty = good. Unusual looks or deformities = bad.
Insensitivity abounds. For example, most people with cleft lips and palates cannot breathe well through our noses, making us mouth breathers.
The insult “mouth breather” has come to mean a “stupid person.” Every time I hear it, I swallow my hurt and anger.
My feelings are a shadow of what people with melanated skin experience, swimming in an unfriendly sea of whiteness…and the battering winds of white supremacy. Anyone who is disabled, LBGTQIA+, wearing a hijab, or in some other kind of marginalized space feels this lack of representation everywhere they go.
I realize I carry white, cis, straight, Christian, “abled” privilege. I also carry the privilege of being deeply loved by my parents from birth, no matter what I looked like.
But my grief is deeply connected to my passion for representation and inclusion. I understand what it’s like to not see yourself represented in the world.
I am grateful for my own grit and resilience. I am a better and stronger person because of what I have endured in my life. But a few weeks ago, I realized that along with my resilience, I've been carrying grief too. My healing came with SoulCollage. Here's what came up for me:
I have never felt truly beautiful and at home in my face.
I survived stoically through childhood surgeries, bullying, and trauma. I pretended it didn’t bother me.
I wonder if my independence and need for autonomy, from a very early age, comes from this lack of representation and the feeling that I was all on my own.
I'm grateful to the small circle of women who created a safe space to help me process my grief.
My earliest childhood memory is going to the hospital for surgery. My parents had to leave me in the children’s ward. I don’t remember being scared. Instead I was excited about my two new books…one about a little boy going into the hospital for a tonsillectomy. That was all my mom could find about a childhood surgery.
Things are better now. In addition to charities like Smile Train spreading education and healing, the Internet has a ton of resources and support groups for cleft-affected kids, adults, and parents. Children facing cleft surgery now can receive books tailored just for them.
Here’s your call to action:
Fight for representation everywhere you go. Use your influence to get broader representation on teams, marketing materials, and anywhere decisions are made. Skin color, ethnic background, religion, gender, sexual orientation, different abilities, size, and facial and body differences. Representation matters so much.
Advocate for inclusion wherever you can. Consider how someone might feel if they read or heard your words. If someone makes a joke about someone’s appearance or the way they breathe, speak up. Contact organizations to advocate for better inclusion and representation in TV shows, movies, and advertising. Urge your organizations and communities to create inclusive calendars.
Educate yourself so you can be more inclusive. Language evolves constantly. Stay up to speed. Think about the evolution of what we call Black people or those in the LBGTQIA+ community. Words that were once thought to be evolved are now insults. Learn what is helpful and harmful from the communities themselves. Banish "mouth breather" from your vocabulary please.
Why wouldn’t you want to avoid words that cause harm or hurt?
May no other child grow up without seeing someone who looks like them.
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