A FACE FOR PICASSO

This memoir of a young White woman with Crouzon syndrome explores growing up with facial differences in an ableist, beauty-obsessed society.

Ariel and her twin sister, Zan, were born with a rare condition that affected the growth of their skull bones. Crouzon syndrome not only has medical repercussions—Zan and Ariel have seizures and problems with breathing, hearing, and vision—but a profound influence on the way the sisters look. From infancy, they were treated by physicians who were excited at the chance to work with such a rare condition and who sometimes couldn’t distinguish between aesthetic and medical motivations. As Ariel shows in her narration of the story of their childhood and adolescence, every milestone was touched not just by health difficulties and prejudice, but by the constant, ongoing surgeries the twins underwent beginning when they were 8 months old. In Ariel’s thoughtful and poignant telling, her own emerging awareness of and realizations about Western beauty standards didn’t change how she wanted to be perceived by the world; internalized fatphobia may seem almost mundane amid all this trauma, but the mistreatment resulting from “being fat and disfigured” ends up causing just as real a crisis. Though many events feel only loosely connected and the work reads almost like a series of essays, a narrative about Pablo Picasso and cubism ties together many otherwise fragmentary episodes.

Memoir as recovery: deeply thoughtful and eschewing too-tidy conclusions.