In her debut memoir, A Face for Picasso, Ariel Henley recounts her childhood growing up with Crouzon syndrome, which caused the bones in her face to fuse too early, necessitating multiple surgeries that altered her appearance. Although her family was loving and supportive, she struggled to find acceptance and a stable identity in a world that “others” those who don’t conform to traditional beauty standards. As an adult, Henley advocates for facial equality, with essays published in the New York Times, the Atlantic, and Huffington Post. We spoke with her about her experiences writing a memoir, her relationship with the legacy of Pablo Picasso, and the ways in which art can function as activism.

Why did now feel like the right time to put your story on paper, and what led you to write it for a YA audience?

It’s something I knew I always wanted to do starting around middle school, when I was 12 years old. Even the idea of writing this book and telling my story was something that gave me hope. It was something to look forward to. If I was having a bad day, it was like, “Well, you have to show up. It’ll be another story for the book, another thing to write about.” It allowed me to show up for life when I didn’t always want to and when I didn’t always feel like it. I worked on it for years, taking notes everywhere I could, keeping journals, because there were no stories I could relate to. It was a way for me to feel heard. If even one person with Crouzon syndrome reads my book and gets something from it, that’s what I want.

I think it was around 2015 when I started to take this more seriously—I wanted to make it happen. So I started pitching different essays and things like that, and the response I got was really encouraging. There were so many other people out there like me who I didn’t even know existed—there were whole communities of people. It was really empowering for me to feel like there was a place for my story. I also think the Trump administration really, really amplified a lot of the discrimination and problematic issues in our country, so I felt like, “Why not now?” I feel like we’ve all been living in panic mode, so to speak. We don’t know what the future is going to hold or what’s going to happen tomorrow. The aftermath of trauma is how I’ve lived my life: if you want to do something, you do it right now, because you don’t know how much time you have.

I didn’t plan to do [it as] young adult, actually—I didn’t think about it one way or another. When I started to talk to agents, they all said, “This seems like a really great young adult memoir.” I hopped on board very quickly with that idea because it’s really hard to grow up in a world that acts like you don’t exist, or that would rather you not exist. So I loved the idea of being able to reach the kids who are going through something similar, whether it’s Crouzon syndrome or just feeling like they don’t belong.

Most of the book is about your own life, but you also delve deep into the art and life of Picasso. What was that research process like?

A lot of the stuff I learned growing up. It was little stories I’d heard here and there—I’d make a mental note of them. Finding the article that compared my face to a Picasso painting, basically—I kind of unpack this in the book—it very much felt like being compared to him, and I was so offended by that, especially as a girl: “Okay, cool, compare me to these weird-looking faces, but also you’re comparing me to an old man. I don’t feel good about this; I don’t identify this way.” When someone says something that hurts your feelings a little bit, it’s always easier to hang onto that negative feedback, so I had that in the back of my mind for so long. Any time I would hear anything about Picasso, I would file it away. Then, when I started to think about the structure of this book, I went back and made sure that I understood some of the stories correctly, fact-checking myself. So the research process was ongoing, making notes of things that I found as I grew up.

Throughout the book, you challenge cultural assumptions about beauty and ugliness. Have you noticed any of those assumptions change since you were a child, for better or for worse?

The body positive movement is a great thing, and it’s widely celebrated and accepted, as it should be. I do think there has been a huge change, in some ways, because there’s more access to information. The disability community, for example: social media has given people with disabilities a platform that they didn’t have before. Being able to have access to all these different kinds of stories does open people’s minds to other standards of beauty. But I think that we still are held, especially as women in this society, to Western standards of beauty that tend to prioritize white, thin, able-bodied individuals. Beauty norms may shift in some ways, but it’s still problematic; the bar can move, but people still don’t reach it. We still feel like we have to measure up in some way. I think you could argue that it’s actually even harder, because there are filters on social media. There’s this idea that you have to be perfect all the time, but the people in those photos don’t even look like that in real life. I think it’s still a problem.

How do you consider your writing, and this book in particular, a form of activism?

For me, it’s all about showing up as my full self and trying to make other people feel like they can as well. Being able to talk with teachers, doctors, and mental health professionals, starting to have conversations about things like academic accommodations, for example—not being punished for having to miss school. Using my story as a way to help facilitate conversations, to hopefully encourage change. Same with mental health professionals—the number of times I have had a therapist or even a psychiatrist who had no idea what Crouzon syndrome or facial difference is, what that impact is, or what it’s like to live with a physical difference or disability in a society where beauty is your worth, in a lot of ways. I use [my story] as a resource to encourage others to do their own learning. It’s the same thing with doctors—I’ve gotten to use my story to have conversations with entire craniofacial departments, which is really cool, and talk to doctors about the psychological and emotional impact of having some of these operations. I’ve had doctors reach out to me and say, “Honestly, we didn’t even think about that.” In that way, I do consider this to be a form of activism, because it’s my full belief that it’s starting a conversation to move things in a direction that prioritizes people with facial differences—Crouzon syndrome, or any kind of disability or physical difference—so that they feel valued, and that their whole person is being seen and valued.

A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley. FSG, $18.99 Nov. 2 ISBN 978-0-374-31407-1