A Face for Picasso: Coming of Age with Crouzon Syndrome

Author Q&A

Your book is about your experience coming of age with Crouzon syndrome. Can you talk about why visibility in this space is so crucial?

In mainstream media, disfigurement is often used to represent evil (Scar in The Lion King) or pity (Quasimodo in The Hunchback of Notre Dame or Auggie in Wonder). There aren’t stories that normalize disfigurement and this othering has real life implications. I and others with facial differences like me have been dehumanized, abused and discriminated against due to ignorance.

My twin sister and I grew up feeling alone. We didn’t know anyone besides each other with experiences like ours. So not only did we feel like aliens, but we were treated that way too. People who weren't used to our faces often treated us terribly. There were times when kids would literally run away from me screaming. There were times when parents would pull their kids away, as if they were afraid their child might catch something from being near me. I internalized the idea that everything about me was ugly and wrong. That I was less than. But I believe acceptance starts with exposure, awareness, and education.

A FACE FOR PICASSO shines a light on how heavily Western standards of beauty pervade our culture. In what ways do you feel these standards impact identity?

We’re taught by western beauty standards that what we look like is who we are. Our society idealizes symmetry, whiteness, and thinness, further perpetuating racism, ableism and fat-phobia. Physical appearance dictates worth, and so people are left desperately chasing unattainable standards and never feeling good enough. This puts some people on pedestals and pushes others further into the margins.

What message do you hope that readers take away from this book?

After reading A Face for Picasso, I hope readers better understand that people are more than what they look like and see the beauty in embracing individual differences. I want my story to help normalize facial differences and provide readers with a deeper understanding of ableism. Lastly, that loving and accepting yourself even when the world tells you not to is the greatest act of resistance.