A Face for Picasso: Coming of Age with Crouzon Syndrome

Written by Ariel Henley

Narrated by Ariel Henley

There was danger in the kind of beauty I was desperate to achieve.

At only eight months old, identical twin sisters Ariel and Zan Henley 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 medical procedures to keep them alive. Doctors expanded the twins’ skulls and broke bones to make room for their growing organs. After each surgery, the sisters felt like strangers to each
other, unable to recognize themselves in the mirror. Their case attracted international attention. A French fashion magazine said Ariel and Zan “resembled the works of Picasso,” as if they were abstract paintings, not girls just trying to survive.

Later, plastic surgeons cut and trimmed and tugged their faces toward a tenuous aesthetic ideal. The girls dreamed of appearing “beautiful” but would settle for “normal.”

Fighting for acceptance was a daily chore. Between besting middle school bullies, becoming a cheerleader in high school, and finding her literary voice in college, Ariel learned to navigate a beauty-obsessed world with a facial disfigurement to
become the woman she is today.

From a resonant new voice, here is an unforgettable young adult memoir about beauty, sisterhood, and the strength it takes to put your life—and yourself—back together, time and time again.

• Language: English
• Publisher: Recorded Books, Inc.
• Release date: Nov 2, 2021
• ISBN: 9781705040546

Ariel Henley

Ariel Henley is a writer from Northern California with a B.A. in English and Political Science from the University of Vermont. She is passionate about writing as a form of activism, and hopes to use her story to promote mainstream inclusion for individuals with physical differences. Her work has appeared in The New York Times, The Atlantic, The Washington Post, and Narratively. A Face for Picasso is her debut novel.

Reviews for A Face for Picasso

[electrascaife · Rating: 4 out of 5 stars]

A memoir that recounts the author's childhood through her college years as she and her twin sister struggled through myriad surgeries to 'correct' their faces, which were misshapen as a result of being born with Crouzon syndrome.

I generally enjoy this type of middle grade/teen (this one's more on the teen side) book for how they expose readers to lives that are very likely different from their own - and for how they represent other readers who can find themselves in their pages. This one, though, felt a little counterproductive on that front. I hesitate to criticize memoirs on any level, because I think their authors are a particular kind of brave and should be praised for having the stamina and courage to open up their lives to others in such a way. So I don't say this lightly and I'm also not claiming that there isn't value in the book in a lot of respects. It just didn't quite work for me overall. Henley seems to focus too heavily on her struggles for it to be an inspirational story; I was left wondering who this story was intended for. Also, the parallels Henley tries to draw between herself and Picasso are strained and in places trite, and in the end it reads like a forced comparison in a first year composition paper.

[akblanchard_1 · Rating: 4 out of 5 stars]

Author Ariel Henley and her twin sister Zan were born with Cruzon syndrome, a genetic condition that results in unusual, distinctive facial features. As children the two girls were teased mercilessly by their peers and subjected to painful surgeries to "normalize" their appearance. Although they were blessed with a loving family as well as access to therapists and world-class plastic surgeons, no one ever seemed to tell Ariel and Zan that they were enough the way they were. As a result, the sisters ended up being very angry and crying a lot, seemingly on every page. Oddly, they never meet anyone else with issues similar to their own.

This 378 pages of raw memoir could have used some judicious trimming. Some plot points are over-indulged (such as endless dwelling on the politics of 7th grade cheerleading), while other, more important issues (such as the author's eating disorder) are given short shrift. Still, I liked the author's use of Picasso's biography, especially his treatment of women, to illuminate her own.

Memoirs by people with craniofacial issues are few and far between. This one, although flawed, deserves to be read by those interested in the topic.