A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley (2021)

What is beauty? Who gets to decide who is beautiful and who is not? If someone can be “disfigured”, who decides who is “figured”?

For Ariel Henley, growing up with Crouzon Syndrome, a genetic disorder where bones of the skull are prematurely fused, she regularly asked herself these questions. Unlike typical children, the bones in her skull did not grow with her and she had to have several risky surgeries that saved her life but led to long, painful recoveries. And her face didn’t look like other children’s faces. After she had to have another surgery at the beginning of seventh grade, a procedure where doctors broke her facial bones to move them around, her face didn’t even look like her own face.

In this memoir, Ariel doesn’t shy away from the awful reality of growing up with a visible disability. She was horribly bullied by classmates and teachers alike. People made assumptions about her based solely on her appearance. It’s a moving and evocative story that deserves a wide audience. If you’ve read or taught the book Wonder by RJ Palaccio, you should definitely give Ariel’s memoir a read. It’s written for teens and appropriate for middle schoolers and older students, but I got a lot out of it as an adult reader, too.

If you enjoy this book or if you’re interested in more disability stories written by people who have disabilities, check out: