A face for Picasso Coming of age with Crouzon syndrome

Ariel Henley, 1992-

Book - 2021

"A YA nonfiction story about Ariel and her twin sister's experience living with Crouzon Syndrome"--

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Subjects
Genres
Young adult nonfiction
Autobiographies
Published
New York : Farrar Straus Giroux 2021.
Language
English
Main Author
Ariel Henley, 1992- (author)
Edition
First edition
Physical Description
378 pages ; 22 cm
Audience
Ages 12-18
Grades 10-12
Bibliography
Includes bibliographical references.
ISBN
9780374314071
Contents unavailable.
Review by Booklist Review

ldquo;Their faces resembled the work of Picasso." This line, from a French magazine article written about Ariel Henley and her twin sister, Zan, haunts Ariel throughout her affecting and unflinchingly honest memoir. The book is an exploration of -Ariel's--and by extension, her sister Zan's--childhood, up through the start of college, and the discrimination and ableism they experienced as a result of having a facial disfigurement. Ariel and Zan were born with a rare condition called Crouzon syndrome, which meant they spent their childhoods having recurring invasive, and often life-saving, facial surgeries. Ariel's first-person perspective, separated into three sections (Before, After, and Healing), is expertly crafted, infused with emotional resonance and populated with flawed characters who grow and change as the story unfolds. Ariel's richly detailed perspective allows the reader to deeply understand the trauma of experiencing so many difficult medical procedures, as well as the lifelong impact of bullying and discrimination. Society's obsession with traditional beauty standards and thinness causes Ariel to struggle with an eating disorder and to oscillate between shame about her appearance and defiant confidence in the face of blatant ableism. Her exploration of how these experiences shaped her is empowering without veering into corny, and the Healing section feels earned after so many chapters of watching her develop into a young woman who refuses to be defined solely by her facial difference. Instead of allowing an early comparison to Picasso to continue to haunt her, Ariel reclaims her narrative and, in doing so, writes a memoir that sets her free. A must-read on self-love, beauty, disability, visibility, and community.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

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. (Nov.)

(c) Copyright PWxyz, LLC. All rights reserved
Review by School Library Journal Review

Gr 8 Up--Henley weaves a memoir of a journey to finding one's identity, while dealing with a life of raw physical and emotional pain. Born with Crouzon syndrome, a condition where the bones of the head fuse prematurely, Ariel and her twin sister, Zan, grew up under an umbrella of burden: the perpetual hostility of a society with strict beauty standards and the endless stream of life-saving facial surgeries. Told in segments, this memoir moves readers through Ariel's early childhood into the overwhelming middle school experience, which is marked by trauma but also resiliency, and then into her late-teen early college years, where she finally allows herself to break from the mold of external influence. Henley effortlessly explores the immense societal importance of striving toward unobtainable beauty standards and the authentic consequences for those who seemingly fall short of it. The book also touches on eating disorders, post-traumatic stress disorders, and anger issues. With a perceptive analysis of the way beauty standards shape the most basic social values and a fascinating coming-of-age story told from a unique perspective, Henley's memoir is not to be missed. VERDICT Captivating, unflinching, and insightful, this title is highly recommend.--Jessica Manafi Brits

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

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. (author's note, sources, reading list) (Memoir. 12-18) Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.