A Face for Picasso by Ariel Henley *****

A Face for Picasso by Ariel Henley is a memoir about coming of age with Crouzon Syndrome- a rare craniofacial disorder that deformed Ariel’s face. In the author’s words, she was “ugly.” The book is an emotional roller coaster from the heights where the author overcomes her medical and social challenges, to the depths where I was so angry at the insensitivity and cruelty of children and adults. Much of the book is about seventh grade, not the best of times for most of us, but most harrowing for an “ugly” girl. Nothing is sugar-coated. In between reliving the author’s trials are many insightful observations on beauty in our society. Highly recommended.

At twelve years old, I was already used to people identifying my flaws and commenting on my ugliness. It comes with the territory of being born with a facial difference as a result of Crouzon syndrome—a rare craniofacial disorder where the bones in the head fuse prematurely. My eyes were too far apart and too crooked, my nose too big. My jaw was too far back, my ears too low.

As I read this book, I thought of Black Lives Matter. Before BLM, many people, including myself, imagined that the United States had made progress since MLK, but thanks to BLM we had our eyes opened. In the same way, I had thought that all the talk of anti-bullying campaigns in the schools had helped, this memoir shows that the bullies continue, and even worse they are still aided and abetted by the adults who should know better.

Crouzon’s Syndrome might be rare (1 in 60,000 births or 60 cases annually in the US), but this memoir has an important lesson for anyone seeking healthcare. Self-advocacy is required. You know your situation much better than anyone else. The author’s mother knew her twin daughters had a serious condition, but she had to see many doctors over the period of a year before she got the proper diagnosis. Many of those doctors denied there was a problem. First, they thought we were epileptic. Then they thought we had Down syndrome. Then they suggested a host of other conditions, but none of them explained our symptoms. Later they had to fly to France for a consultation. For any condition, self-advocacy is important and this book is an excellent practical example.

This book also talks about the challenges faced by women in a world where external appearances are the first thing that anyone sees, and often the only thing.

Summary: If you are interested in feminism, medicine, equity, or simply living at peace with others, this book has a lesson for you.

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