Q&A With Ariel Henley, A Face For Picasso: Coming of Age with Crouzon Syndrome

Today we’re pleased to welcome Ariel Henley to the WNDB blog to discuss A Face for Picasso, out November 2, 2021.

I am ugly. There’s a mathematical equation to prove it.

At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it.

Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement.

Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.

Writing a memoir can be a very difficult thing to do, as you were honest about within the pages of A Face for Picasso, especially when writing about traumatic experiences. How did you practice self-care and make sure that you were holding space for your emotional responses while writing and revising?

Writing A Face for Picasso was definitely an emotional process. I practiced self-care by going on long walks and listening to Taylor Swift on repeat. I also took up watercolor painting again. I got really into Let’s Make Art videos and followed along with watercolor tutorials by Sarah Cray. They are so soothing and fun. I’m extremely fortunate to have a supportive family and group of friends who would call and check on me and let me talk through everything with them. My boyfriend also got me a dog, a long-haired dachshund named Patrick, which added so much happiness to my days. Patrick and our cat, Peanut, were great emotional supports throughout the process. Therapy was also incredibly helpful and gave me the space and tools to work through and process my experiences as I wrote about them without getting lost in the depths of my trauma. 

A Face for Picasso has a theme woven throughout that touches on a French magazine article that said you and your twin sister, Zan, have faces that “resemble the work of Picasso.” I love the way you had this narrative thread evolve throughout, both exploring the negative impacts of Picasso’s legacy (his racism, his mistreatment of women) and also the way you chose to reclaim and reframe this comparison. Why was this important to you? How did it come about as a through-line for this book?

For me, it was that line and that comparison that I always went back to. Now that I’ve been doing trauma therapy for a couple of years, I understand that rumination is a symptom of PTSD. But at the time, it felt inescapable. I could not help but think about the comparison constantly, sometimes obsessively. I could not help but frame my experiences through the lens of that comparison, because I felt like everything in my life related back to it. It was a turning point for me. It signified the moment that I really began to acknowledge and internalize how I was viewed and treated by the world around me. 

I was deeply ashamed and embarrassed when I found my face had been compared to a Picasso painting. The idea of separating the art from the artist didn’t make any sense to me, because I was always defined by what I looked like. Everything I did was an extension of what I looked like. I was my appearance. So being compared to a Picasso painting felt like being compared to Picasso himself. And the more I learned about Picasso the person, the more ashamed I was. As a kid, I was angry and traumatized, and every time I lashed out and treated the people I loved poorly, the more I saw myself as Picasso the abuser. 

For me, Picasso represented the toxic standards of beauty that women are held to in our society, and I internalized this idea that I was less than because I was different. Learning more about Picasso and the women he abused in his own life, allowed me to better understand myself and my own trauma. I’ve begun to have more empathy and compassion for myself. I was abused by the world the way Picasso’s partners were abused by him. This through-line allowed me to see that I wasn’t a Picasso — or at least I didn’t have to be.

A Face for Picasso is separated into three sections, before, after, and healing, and you wrote a little bit in your afterword about why. With a book that tells the story of so much of your life, how did you decide what was ‘before,’ and what was ‘after?’ I think that’s a very universal feeling, by the way, this sense of before/after an emotionally big life event.

My story starts with me in seventh grade and talks about finding the article that compared my face to a Picasso painting. Then it rewinds to tell readers everything that led up to that point. Because for me, that’s where it all began. That was my “before.” As I mention in my book, I think about my life in terms of before and after. Before and after seventh grade. Before and after I had major surgery that changed what Zan and I looked like, again. 

I was a different person after I had the operations that summer and so I started the “After” section there. The summer before seventh grade marked a loss of innocence for me. Not only did Zan and I look different after surgery, but we were different. There was a very clear separation, and it became even more clear after finding the article that compared our faces to a Picasso painting. For me, each section of the book marks a different version of myself. 

The section on healing was a bit more complicated because the section doesn’t start with me learning to accept myself. It starts at the part of my story when I was really starting to come to terms with my experiences and unpacking how I felt about my surgeries and my appearance, instead of feeling how I thought I was supposed to feel. Healing was a process—a nonlinear process. I really wanted to show how I was on board with surgery, then I wasn’t. Then I was again. Then I wasn’t. It was a roller coaster. Because that’s how healing works. Sometimes it’s one step forward and three steps back, and that’s okay. 

I was also really drawn to this idea of before, after, and healing because that’s what memories were like for me growing up. I had so many operations, many of which were meant to alter my physical appearance. So I viewed myself as a work in progress. Growing up was about becoming the “real” me. My identity and perspective were so linked to surgery that I viewed everything as though it was a project. I had a very all-or-nothing way of thinking about things, which is also common with individuals who experience trauma. So in that way, the book is structured in the same way I viewed my surgeries and experienced life. Before surgery, after surgery, and recovery time. 

I absolutely loved the way you explored your relationship with Zan; the closeness shared by twins that cannot be understood by anyone else, the way that you would be just as unhappy to see her in pain during the aftermath of surgeries or bullying as you would be to experience it. It’s like you two genuinely share each other’s pain, sorrow, and joy. From a craft perspective, how did you pull these things out to write about them? How did you treat Zan as a character, in the sense that she would change, grow, and have flaws and authentic emotions in A Face for Picasso?

When people learn that Zan and I are identical twins with Crouzon syndrome, I hear a lot about how we are so lucky to have gone through everything together. And don’t get me wrong, I love being a twin and it was nice to have someone understand what I was going through. But it was also incredibly traumatizing to not only experience the operations and discrimination firsthand but then I had to also watch the person I love more than anything in the world go through it too. And I really wanted to speak about that experience. It’s something I think parents and siblings of individuals with Crouzon syndrome and other craniofacial conditions will be able to relate to. It’s heartbreaking and devastating to watch helplessly as someone you love suffers. And it’s hard to be the one suffering. There’s no manual on how to handle it. It was very important to me to try to convey the messy and complicated parts of our experiences. It isn’t having surgery, returning home from the hospital, and then everyone is fine. It’s years of trauma responses and struggles with mental health. 

I’ve been pretty vocal about wanting my memoir to be honest and raw, and not be focused on inspiration porn. I didn’t want people to read my book and walk away thinking Zan and I are so inspirational simply because we’re different. So from a craft perspective, I allowed myself to be okay with there being some loose ends and less straightforward conclusions because that’s life. There aren’t always answers. The writing itself is a testament to the impact of trauma—the almost essay-like structure of the chapters was my way of showing how trauma impacts everything from the bond I had with my sister to how I communicate. 

In writing A Face for Picasso, I relied on my own memory, my family’s memory, Zan’s memory, and our journals. I also interviewed friends and went through medical records. When it came to writing Zan, I kept going back to wanting her to be real. There is absolutely a shared empathy between twins, which was extremely helpful when writing because I felt like it was easy to get in her head. Because Yes, Zan is my twin sister but in a lot of ways, she was also my purpose. There were times when I wanted to give up. The way I was viewed and treated left me with overwhelming hopelessness. But my relationship with Zan, and how much I love my sister, was my reason to fight and push forward. So I tried to lean into those memories a lot. 

I also think it’s important to note though that while the cool thing about being a twin is that it’s like this other human who feels like an extension of you, Zan is her own person and I’ve really wanted to honor that her thoughts, feelings, and experiences were her own. As are mine. I did my best to portray things accurately but I also tried to show how identical twins can go through something together and yet handle things differently or experience things differently. There were a lot of overlapping feelings and experiences, but I wanted to make it clear that while I tried very hard to portray my sister’s story and her truth, it is ultimately her truth and our story through my eyes. It’s my perspective. And this perspective—my watching her go through operations and recovery—is something I fell back on a lot while writing. 

One of my favorite scenes in the book was when you talked about receiving an achievement award and being dismayed that you felt you and Zan were given this award just for “being inspiring” because you have a facial disfigurement. Why was this a pivotal moment for you and how does it compare to another moment later in the book where you describe finally getting awards that recognize you for your actual achievements and not just your facial difference?

Everything about my life felt tied to my appearance. I understood that people were rewarded for beauty and meeting societal expectations, but I felt like I was being “rewarded” for my ugliness. It felt like I was receiving an award because people felt bad for me. I know the intention behind the award was good, but it felt very patronizing and demeaning. I wanted to be seen for who I was—including what I had been through—without being defined by it. The “Most Inspirational” award felt like I was being held up as a token to inspire others, but ultimately it felt empty. 

When I received scholarship awards at the end of the book, they came from people who didn’t know me or what I looked like. I won the awards for doing community service and starting a mentoring program, not because anyone felt bad for me or pitied me for having to go through life with an asymmetrical face. For me, it felt like a message that things could get better. That I didn’t always have to be limited by or defined by my physical appearance. I was more than what I looked like. 

You mention many times how important visibility and representation would have been for you and Zan, how you were the only people you knew with facial disfigurements, and how popular media often made people’s discrimination worse. What would it have meant to you two as children to have varied, positive representations of facial differences in the media you had available to you?

It would have meant everything to me. Living with a facial difference has made me very aware of what it means to be unrepresented. I grew up never seeing anyone like Zan and me. It has also forced me to really think about who gets to tell what stories, and how the stories that are told impact real people. Language matters. Seeing ourselves represented matters. It tells us we matter. That we’re not alone. That things can get better. It gives us hope and meaning, and the courage to be ourselves. I spent a long time hating myself because I didn’t know I could be myself and be happy and thrive. 

You wrote about the magic of childhood with such nuance, the excitement of the new custom house your dad built after your first home burned down, and your close relationships with neighboring kids. Why was this an important aspect of the book for you, to show that although you and Zan experienced so much difficulty, in many ways, you had the same family and childhood as everyone else? 

I really wanted to normalize my childhood—to show that regardless of how ‘different’ I may have appeared, Zan and I were just like other kids. We had friends and played sports. We simply had slightly different appearances and medical experiences! 

There’s this idea that being different and having a craniofacial condition automatically means having a lower quality of life. But having Crouzon syndrome was never the issue. Surgeries weren’t fun, of course, but I wanted readers to understand that it was the ableism and discrimination I was constantly subjected to that made me internalize the toxic beauty standards women are measured against. When I was with my family or friends, or people who loved and accepted me, I didn’t hate myself or what I looked like. It was only when I realized I was supposed to dislike my different appearance that I began to internalize the hateful comments people made about me. Otherwise, I was just a normal kid.

A Face for Picasso does an excellent job of showing your emotions and the physical toll of medical trauma from so many surgeries and procedures as a result of being born with Crouzon syndrome. How did you balance writing about the more emotionally difficult parts of this, such as wanting to stop having surgeries, with the humor? I really loved a lot of the disability-related humor in this book, it was very familiar to me and probably is to anyone who spent a lot of time in medical settings growing up. 

I tried to tap into the person I was at the various ages I write about in the book, and humor was definitely a coping skill that I used to get through everything. So incorporating that felt natural because that’s how it was for us. Anger was also a key part of my experience. This is where my journals and notes came in handy. I felt strongly about showing readers the complicated nature of my experiences because even something as terrible as surgery and being in the hospital wasn’t all bad. I was surrounded by love and my family made the best of everything. I genuinely loved my doctors and nurses. 

But to answer your question about balancing writing about the emotionally difficult parts with humor, I didn’t want readers to read my book and walk away feeling heavy and sad like they were experiencing second-hand trauma just from reading my story. Incorporating humor and funny stories helped balance out the darker side of the narrative, just like it helped soften my own experiences as they were happening. It felt very natural and authentic to do it this way.  

What were some of your favorite scenes to write in this book?

I had a lot of fun writing about the tooth in my nose in Chapter 4 because it allowed me to tap into the playful, yet serious dynamic between my family. Everything from my parent’s interaction to my brother’s comments had me giggling. 

If you could design your dream panel to promote this book, what would the panel be about? Who else would be on it with you?

I am actually doing a SXSW panel on normalizing visible differences with Maria Luisa Mendiola and Nathalia Freitas this Spring, and I am so excited about it. I will get to talk about A Face for Picasso and facial difference and I think it’s going to be great! 

What other books (memoirs but also fiction) do you think A Face for Picasso is in conversation with? And do you have any recommendations for published or forthcoming YA?

A Face for Picasso touches on so many different topics like facial difference, disability, ableism, beauty, and trauma. I would say it is in conversation with books like Sitting Pretty by Rebekah Taussig; Golem Girl by Riva Lehrer; Her: A Memoir by Christa Parravani; and Autobiography of a Face by Lucy Grealy. 

My recommendation for published and/or forthcoming YA would be to avoid inspiration porn. Don’t use disfigurement as a symbol of evil or tragedy. Normalize disability and facial differences. It is a physical characteristic, not a whole personality. That’s not to say that certain aspects of a person’s personality aren’t dictated by their disability or facial difference, but there is so much more to people than what they look like. People with disabilities are complex and diverse just like non-disabled individuals. 

What’s one question you wish you were asked more often (and the answer)?

I don’t get asked much about my doctors and surgeons, who I write about a lot in my memoir. My lead surgeon, who I wrote about in the book, recently passed away unexpectedly, and mourning him has had me reflecting on my relationship with him and my other doctors a lot. 

There was a time when I was angry about everything I’d been through, and my appearance was a source of shame. It was a reminder of all the ways I didn’t measure up. But now when I look in the mirror, I see the work of my surgeons—my heroes—and I feel proud of what I look like and who I am. I am very much at peace with who I am and I have so much gratitude and love for every doctor and nurse that has helped me.