Although A Face for Picasso: Coming of Age with Crouzon Syndrome, published yesterday by FSG for Young Readers, the debut memoir by Ariel Henley, is ostensibly targeted toward young adults, the truths within highlight some of the darkest, ugliest aspects of our appearance-obsessed society.
Henley’s story centers on the harrowing physical, mental and emotional trauma she and her identical twin sister Zan experienced growing up with Crouzon syndrome, an obscure craniofacial condition that causes the bones in the head to fuse prematurely. From birth, the sisters endured over sixty surgeries, a grueling process that familiarized them with intense physical pain and the concept of mortality, all before they were even five years old.
Henley recounts how growing up with an appearance constantly in flux created an unstable sense of identity for her. As a child, she was unable to fully process the physical pain of the surgeries, but the emotional pain was often much worse. The constant stares and whispers, the laughter and the grimaces, being shouted at and ridiculed by children as well as by adults—all of it stoked Henley’s drive to share her story.
Henley’s writing has appeared in the New York Times, The Atlantic, the Washington Post, The Rumpus, and Narratively. She can be found on Twitter at @ariel_henley9, where she shares her writing and engages with the vocal community of anti-ableist and facial equality activists that has arisen there.
I was delighted to talk to Henley about her debut, which received a starred review from Booklist. We spoke over the phone about growing up with a facial disfigurement, sifting through painful memories to access the past, and how writing helped her speak her truth—and face it.
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The Rumpus: How did this book come to be?
Ariel Henley: Growing up with Crouzon syndrome, I was in and out of the hospital. My identical twin sister and I had a lot of surgeries, so from a very young age we were exposed to really hard things that we did not have the ability to process. For me, even in elementary school, writing was a way to be honest with myself. I had to compartmentalize my experiences a lot, so when I wrote I could really process things and be honest about what I was feeling and thinking.
The summer before seventh grade, my sister and I had two major surgeries—the ones focused on primarily in the book—that completely changed what we looked like. It was a very traumatic experience; physically painful and emotionally and psychologically damaging in a lot of ways. So, when we went back to school looking completely different while having to deal with kids being kind of terrible to us, I turned to writing as an outlet. That year, my teacher gave us an assignment to write a short story. I found that even when I was writing fiction, it was still my story. I still had that burning desire to write about what I was going through because I never saw or read about people like me.
When I turned in my story, my teacher was super positive about it and told me I might have a future as short story writer. I held onto that comment for years, and that is when I decided I want to write a memoir and share my story. After that, even when I didn’t want to do something, or I was feeling anxious about an event, I would tell myself, No, it’s a story for the book. It helped me focus on something bigger than myself and gave me the courage to show up, to participate in life even when I was scared all the time. People made me feel like I didn’t belong anywhere, so this was a way to take ownership of my story.
Rumpus: Was A Face for Picasso originally targeted toward young adults, or did that come later?
Henley: I don’t think I ever thought about one specific age group when I first started writing, but then my agent asked me, what age group did we want to target? Getting feedback from people saying it was more of a YA memoir was really eye-opening because yes, I absolutely wanted to write for a young adult audience because I didn’t have these stories growing up and I wanted people to be able to relate to a story like mine, especially if they have a craniofacial condition, or a medical condition or just a facial difference of some kind. I hadn’t known young adult memoirs were a thing, but once I did, it just felt right.
Rumpus: Were there any major cuts or changes made once it was decided the book would be YA?
Henley: I do think it was watered down for young adult audiences, but I think it would have needed to be watered down anyway because I didn’t want people to pick up my book and get secondhand trauma. I wanted to share my story—I didn’t want to traumatize people in the process. So, there were definitely things that were taken out, reworked, and reworded, but I don’t necessarily know that it was because of the age group. It was more for the purpose of the story; there were ways to do it without being too graphic. I think writing this really made me think about what I wanted the reader to take away and what stories would get that message across.
Rumpus: And what was that message?
Henley: For every chapter, I really wanted readers to walk away with an understanding of what facial difference is and what that experience is like, what it means to be different, especially as a woman in an appearance-based society. But more than that, I really wanted readers to walk away with a deep understanding of trauma and what that trauma looks like in just day-to-day life. That, for me, was very important because of the lack of awareness when we were younger around the mental, emotional, and psychological impact these surgeries had as well as the trauma of looking different and not being able to identify with what you look like. I felt like, growing up, if there had been a deeper understanding and awareness of that, I would have turned out very differently.
So, even the structure of the book, the way it’s almost like a series of small essays—that was my way of showing how trauma alters the brain. It literally changes how we think, write, communicate. It was my way of trying to help readers better understand trauma and how it affects things like communication, relationships, and the ability to regulate emotions.
I also really wanted people to walk away with an understanding of ableism, to understand that just because people look different doesn’t mean they are different. We’re all human. The role of beauty in our society is so damaging and to judge people by their appearance is extremely harmful. There are lot of little themes and messages in there, so I hope that everyone who reads the book takes something away from it. It might be different things, but I think that’s ok.
Rumpus: Looking again at the structure of the book, what made you decide to frame certain chapters with your thoughts on Picasso and historical details about the artist, Cubism, and perceptions of his work?
Henley: When I was in seventh grade, my sister and I found an article from the French edition of Marie Claire that compared our faces to Picasso’s paintings. I remember finding it after having these big surgeries that totally changed what I looked like, and I had no connection to what I looked like. I was completely traumatized—I just couldn’t process anything. And then to find this article felt super insulting because on one hand, I understood that they were comparing our faces to cubism and having asymmetrical faces—with an eye over here, a mouth over there, and feeling like, ok, that’s rude. But also, I had a deep understanding from the time I was little that you are what you look like, so to be compared to a Picasso painting felt like I was being compared to the man himself. Because in my mind, everything someone does is an extension of them—that is how I’ve always been treated.
This experience really framed how I viewed and felt about and interpreted all my experiences up until that point and afterwards. Because Picasso was not a great person. He was very abusive and cruel and, in painting the women in his life, he would disfigure their faces to show how he felt about them. It was very toxic, very abusive, and so I drew a connection between the way he abused the women in his life and the way society abused Zan and me. Picasso, in my mind, is a symbol of the toxic beauty standards we deal with every day and the way society pits women against each other constantly, making them feel like they have to live up to these standards to be liked and beautiful and worthy.
It’s a complex comparison in my mind and one that took a lot of processing to deal with because it was very ingrained. I had to really work on addressing my anger. There had been times when I felt like I was an abuser like Picasso because I was angry, and it took a lot to realize it’s ok to be angry about being mistreated. That doesn’t make you an abusive person.
Rumpus: Aside from that Marie Claire article, what was it like to revisit your entire traumatic history, going through your old journals, interviewing family and friends, and poring through ancient medical records?
Henley: It was very hard. It was emotionally and mentally exhausting, but it was also cool in a way. I felt like I got to know myself and my sister and my family and our story through a different lens. I have my memories and I know how things felt and how things happened from my perspective, but for many of the surgeries I was on a lot of medication, so my version of the truth is going to be different from my mom’s or my sister’s, even though we were there for the exact same things.
To go back and look at my old journals and really sit and remember how I felt at that time was hard because it was still very raw and real. Going into the writing process, I definitely told myself I was over this stuff, that I’d worked through it, and I absolutely had not. So, it was sort of like my own version of trauma therapy. My twin sister was very kind and generous to let me read a lot of her old journals and interview her. It was a bonding experience for us. To be on the other side of it at 30 years old, to have the lives we always wanted for ourselves but never thought possible, it was all very emotional. And to go back and reconnect with our childhood selves was sad.
During the process, I also got to look over a thousand pages of medical records and really dig deep into what surgeries happened when and what they actually did. My sister and I had over sixty surgical procedures, some when we were very little, some as teenagers and young adults, and it was shocking to me how little I knew about my own experiences. I was also able to reconnect with old friends with whom I’d lost touch or had fallings out. There was a lot of healing involved.
Rumpus: Were there any self-care strategies you used during the writing process—meditation, yoga, therapy, exercise—to keep those traumatic memories from becoming overwhelming?
Henley: I went back to therapy. I found a trauma therapist. I got back into watercolor painting. I would go on walks. I’ll be honest: I was not the best version of myself while writing this book. In a lot of ways, it took me back to that place and it made me realize, again, that I had a lot of work to do on myself to unlearn some of the harmful coping mechanisms that I used and continue to use. So, I just tried to connect with people. My boyfriend got me a dog, so I would take him on walks. He’s completely blind, his name is Patrick, he’s a longhaired dachshund. He’s my heart.
Rumpus: When you did sit down to write, were there any specific books that served as touchstones of outstanding memoir writing for you?
Henley: I absolutely loved Lucy Grealy’s Autobiography of a Face. I wish she was alive today so I could tell her I’m her biggest fan. I read it when I was in college, and it was so powerful to me. It was the first time I really felt seen on a deeper level. Another I loved, a more recent book, is Educated by Tara Westover. I thought that was so powerfully done, especially the way she addressed the inconsistencies of memory and the truth. And then, of course, Life with Picasso by Françoise Gilot, which I wrote about in my book. It’s an inside look at Picasso and Gilot’s relationship with him. I read it a couple years after finding that article comparing Zan and me to a Picasso painting, so I was totally intrigued.
Another is Truth & Beauty by Anne Patchett, which I’ve been thinking about this week with that story that’s been going around Twitter, “the kidney story,” as it’s being called. I think the New York Times article poses an interesting question, which is: Who gets to tell what stories? Patchett was writing about her friend Lucy Grealy after she passed away, so it’s interesting because I think the book was so good and so well-written, but I know Lucy’s sister was not happy about it. It really makes me stop and ask that same question of who gets to tell what stories.
Rumpus: So, in your opinion, should Anne Patchett have written that story?
Henley: I don’t know. It’s hard because I love the book, but I just assumed that she had the blessing to write it. I don’t want to suggest people need permission to write, but I do think it’s important to recognize who is impacted by the stories we tell. And when stories about a marginalized group are amplified, in my opinion, they really should be written by people from that community. If there were books about this topic by people with facial differences and they were just as mainstream as able-bodied writers, cool, let’s all write whatever we want to. But until people with facial differences are given the same exposure and opportunities, I don’t necessarily think able-bodied writers should prioritize their own experiences of the disabled and their own voices.
Rumpus: Looking to the publishing world, can you recount your own “How I Got Published” story?
Henley: I wrote for The Cynic, the University of Vermont’s student newspaper, and I had a blog throughout college, but I would say my publishing journey really started in 2016 while I was working as a caregiver for an elderly woman in the Bay Area. She was ninety-seven and had spent years writing for a paper in San Francisco. We talked about writing a lot, and she knew I wanted to write a book, so whenever she wanted to take a nap, she would tell me to go write. I ended up enrolling in a virtual writing workshop with author Yelizaveta Renfro through UCLA’s extension program to pass the time and improve my work.
During that time, I wrote an essay about growing up with Crouzon syndrome and beauty and learning about the golden ratio in art class. I got so much amazing feedback, I decided to pitch it to Narratively, which published it in July 2016. After that, I started getting emails from people within the craniofacial community thanking me for writing a story they could relate to, and from editors who wanted to publish more stories about facial difference and disability. That fall, I started hearing from agents who were interested in possibly representing me. When they asked to read my book proposal, I panicked because I had no idea what that was. But writing the book proposal forced me to get even more serious about it.
Throughout my writing process, I was adamant about not wanting my book to come off as inspiration porn. I didn’t want people to come away with the idea that I’m an inspiration simply because I am different and have Crouzon syndrome. After being approached by thirteen literary agents and kindly rejected, in 2018 I ended up with two incredible agents who were offering to represent me. I decided to sign with Rachel Letofsky at CookeMcDermid. In April 2019, my book finally went on submission. Within a couple of days, I had a call with Grace Kendall at Farrar, Straus & Giroux BYR. It felt like she really got me and my story, and I immediately knew she was the perfect editor for this. Luckily, she thought so, too.
Rumpus: Now that you have a first book under your belt, what’s next for you?
Henley: It’s so wild to think about what comes after A Face for Picasso, because I’ve spent my whole life dreaming of this book being out in the world. Now that the time is here, I just have to pinch myself because it’s so amazing. It doesn’t feel real. I think after my book tour, I’m just going to get back to writing. I am currently working on two books: One is a young adult novel and the other is a gothic mystery. Both incorporate characters with facial differences, because at the end of the day, I still feel called to continue trying to normalize disability and craniofacial conditions. I’m still in the early stages of writing, but it’s been a lot of fun.
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Photograph of Ariel Henley by Paul Ngo.
