Disability Reads: Ariel Henley's "A Face For Picasso" A Revelation For Those in the Facial Difference Community

By Kara Jackman

I waited two years to read this book. 

Two.

I avoided reading this book because I knew how close to home it was going to hit – a cannonball to the solar plexus. It was all going to be all too much, so I had to be ready for it. 

I was as ready as I would ever be this summer, and I am happy to report I enjoyed every bit of the book, “A Face For Picasso,” written by Ariel Henley. 

She spoke directly to the way many of us feel in and out of the hospital. Ariel Henley is a twin. She and her sister, Zan, were born with Crouzon syndrome. Not only did she experience these surgeries, she also had to watch her sister go through them as well. They were part of a large family with three older siblings, and a mother and father that loved and fought for them all along the way. 

This exquisitely written book chronicles Ariel’s life in beautiful prose filled with wit, love, and revelations that were very meaningful to me as a fellow craniofacial-affected person. The book is organized into three sections: Before, Finding My Voice, and Healing. She gets into the surgeries, watching her twin experience surgeries, addressing her time in therapy, school, and as a cheerleader. In between, she talks about art history with regard to Pablo Picasso. Her ability to fold in the research she did on Picasso was seamless, and easy to understand. If you are not an art history buff, be assured you will find this approachable. I certainly learned a lot about the man behind the paintings, and I was not impressed, which is why Henley titles the book “A Face For Picasso.” This framing is a way to talk back to his misogyny and the rules of art that govern beauty such as symmetry.

Ariel deftly named so many things that we all experience, but often are not able to explain. Often we chalk it up to trauma, but never explore the root cause of that trauma. Her descriptions of agency and bodily autonomy are truly where the rubber hits the road. She writes, on page 184 of the book: 

“When you grow up in a hospital, you learn that bodily autonomy is a myth. My body was not my own. It did not belong to me. It belonged to the doctors and nurses who shaped every part of me. It belonged to the hospital personnel and to my parents, who signed waivers, consenting to strangers touching, breaking, molding, the very essence of who I was. This was what I hated the most about surgery. It wasn’t the idea of my body being cut open or the pain I experienced when I woke up. It wasn’t even the terror I knew I’d experience during recovery. It was the oblivion. It was fading off into total nothingness. It was waking up and realizing I had no idea what had been done to me. I didn’t know who saw me, who helped me, who touched me. I was helpless. I had no control over my own body.” 

After reading this paragraph, I gasped, my jaw gaped, and I felt seen. Actually, Ariel saw right through me to my soul. The precipitating event that brought on this bit of introspection by Ariel was trying to figure out where her underwear went after a surgery… it had to be removed for the catheter. Her mother kindly reminded her. This very same thing that had happened to me, and has scarred me to this day. So many of us speak of this experience of having to remove our underwear during surgery and it feeling particularly violating. Only recently, have I been able to reconcile this feeling in my own life. 

Another part that stuck out to me was the positive and negative interactions she had with classmates. Usually this kind of book will focus on the negative interactions, but this book shared the special bond she had with friends at school, even allowing them to come visit her while recovering from surgery.

There was some trepidation in allowing her friends to see her recovering, but once it happened, it deepened their connection. After receiving some water and an ice pack a friend brought Ariel after one of these surgeries, she reflects, “I couldn’t show this side of my life to the kids at school. I couldn’t tell them about what my experiences were really like. That was how I knew Nina and Victoria weren’t like our other friends. They never made Zan and I feel like we were different.” This moment, and others like it, detailed in the book, warm my heart.  

There is so much in this book to unpack, issues of control over one’s body; all the unpredictability of planning surgeries only to have them fail or not happen at all; school, college, and figuring out one's identity as one’s face and body change from year to year. Then, there are the triumphant episodes that family and friends of Zan and Ariel have around homecoming court and cheerleading which gave me great hope for society. I even appreciated when Ariel chirped back to her parents about things she hated about her life and experiences. Though I don’t believe I could ever do that to my parents, I am sure I did.

“A Face for Picasso” has something for everyone. Please pick it up and read it, or listen to sweet Ariel read the audiobook version (Oh my, yes! She also read her words for the audiobook version.) Again impressed is not a strong enough word to describe Ariel. Explore the many layers that she examines, and feel validated by this book, an authentic and relatable read. 

  

Ariel is currently conducting research for her next book. I look forward to it and anything else she plans on writing. I am a fan for life. And I am forever sorry that it took me so very long to pick up this excellent read. Fear and trauma are such tricksters. Thankfully, I seemingly always have the last word in their defeat.