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A Face for Picasso

Coming of Age with Crouzon Syndrome

Audiobook
2 of 2 copies available
2 of 2 copies available
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.
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  • Reviews

    • Publisher's Weekly

      October 4, 2021
      Using the life and work of Picasso as a framing device, debut memoirist Henley—a white woman born with Crouzon syndrome, a rare “craniofacial condition where the bones in the head don’t grow”—writes about “beauty through a lens of disfigurement.” After Henley and her twin sister were both born with the syndrome, a series of life-saving and aesthetic surgeries performed throughout their California childhood drastically altered their appearances, leaving Ariel feeling alienated from both her body and a society that others people with facial disfigurements. Exploring experiences of discrimination, emotional turmoil, and an eating disorder, her observations—especially concerning Picasso’s misogyny and ableism, the way the two attitudes intersect, and the ways she’s seen them mirrored in society—are complex and searing. She acknowledges in the prologue that beauty standards are not only ableist but racist, and discusses extensively how fatphobia exacerbated the prejudice she faced. This smart, richly detailed memoir is a compelling meditation on identity as well as a much-needed challenge to an ableist system. Ages 12–up.

Formats

  • OverDrive Listen audiobook

Languages

  • English

Levels

  • Lexile® Measure:880
  • Text Difficulty:4-5

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