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A Face for Picasso: Coming of Age with Crouzon Syndrome

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I am ugly. There's a mathematical equation to prove it. At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome -- a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would br I am ugly. There's a mathematical equation to prove it. At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome -- a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement. Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.


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I am ugly. There's a mathematical equation to prove it. At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome -- a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would br I am ugly. There's a mathematical equation to prove it. At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome -- a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement. Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.

30 review for A Face for Picasso: Coming of Age with Crouzon Syndrome

  1. 4 out of 5

    Emily Ladau

    I've long admired Ariel's writing. She strikes the perfect balance between pushing you to reconsider your views while making it feel as though you're reading a letter from a friend. Her book is a masterclass in this style. There was so much nuance and depth in how Ariel conveyed her past that it unearthed some of my own deep-seated memories as a physically disabled woman. I found myself aching right alongside Ariel as she reflected on her past, remembering my own similar experiences with physical I've long admired Ariel's writing. She strikes the perfect balance between pushing you to reconsider your views while making it feel as though you're reading a letter from a friend. Her book is a masterclass in this style. There was so much nuance and depth in how Ariel conveyed her past that it unearthed some of my own deep-seated memories as a physically disabled woman. I found myself aching right alongside Ariel as she reflected on her past, remembering my own similar experiences with physical and emotional pain. And when she reflected on hard-won moments of joy, I actually cheered out loud. Our world is so fixated on narratives of overcoming that are tied up neatly with a bow--the kind you see as inspirational stories on the evening news--but Ariel doesn't play that game. She is raw and real, and gives readers the kind of honest look at physical differences that I wish more people would take the time to read and understand. I specifically appreciated how Ariel framed her story through the lens of Picasso's art and the women he created so cruelly. The way she interweaves her learning about his story with her own really sets this book apart from other disability/difference-related memoirs I've read, because it adds a layer of cultural context, highlighting that society's perceptions of what's "beautiful" have complicated historical roots. People made such a fuss about "Wonder," both the film and the movie, as being a good teaching tool, but honestly, I'd like to see every copy of "Wonder" replaced with "A Face for Picasso" instead. Ariel's words have the power to make truly meaningful change.

  2. 4 out of 5

    Bill Khaemba

    Henley approaches her story with such raw honesty, re-examining and reflecting on beauty through the problematic life of Picasso, gruesome surgical procedures that shadowed parts of her childhood, mental strain at the ever-shifting self-image that takes a toll on her family and worldview. Infused with such empathy, this journey of self-acceptance was a wonder to experience.

  3. 5 out of 5

    Toria

    I've never known about Crouzon Syndrome before listening to this memoir and I'm glad I learned about it in this format. Very emotional, educational and fascinating memoir that was heard to stop listening to. I loved the way she told her story That made it feel like the most honest and unique memoir I've ever read. From explaining the way looking different has shaped her life, to operations and to using Picasso's paintings to tell her story it's not something I'll soon forget I've never known about Crouzon Syndrome before listening to this memoir and I'm glad I learned about it in this format. Very emotional, educational and fascinating memoir that was heard to stop listening to. I loved the way she told her story That made it feel like the most honest and unique memoir I've ever read. From explaining the way looking different has shaped her life, to operations and to using Picasso's paintings to tell her story it's not something I'll soon forget

  4. 4 out of 5

    Teagan Sturmer

    I am lucky enough to know the author and was able to read this incredible book thanks to her. First of all, Ariel pens words that ring so beautifully and so true you can't help but feel every single moment of this story. She gracefully balances pain, truth, magic, and beauty through the weaving of her words. The power that this story and its words evoke is the deepest magic of this book. I can't count how many times I was affected by it. Tears, laughter, hope, I felt everything because Ariel has I am lucky enough to know the author and was able to read this incredible book thanks to her. First of all, Ariel pens words that ring so beautifully and so true you can't help but feel every single moment of this story. She gracefully balances pain, truth, magic, and beauty through the weaving of her words. The power that this story and its words evoke is the deepest magic of this book. I can't count how many times I was affected by it. Tears, laughter, hope, I felt everything because Ariel has mastered the art of storytelling and baring her soul on the page. I believe this story will resonate with everyone who picks it up and is lucky enough to listen and receive the truth amongst its pages. It is a story of bravery, of courage, of pain, of discovering the power and strength in one's self. Congratulations, dearest Ariel. Your words hold power.

  5. 5 out of 5

    Shannon (It Starts At Midnight)

    You can find the full review and all the fancy and/or randomness that accompanies it at It Starts at Midnight When I started A Face For Picasso, I wondered "how exactly can I review someone's life?". Which, valid, right? But it turns out that it isn't so hard when what you plan to say about the book can be summarized as "I recommend this to all people everywhere". More than recommend, I wish I could require this book for all people everywhere. It's beautifully written, and the story itself is ab You can find the full review and all the fancy and/or randomness that accompanies it at It Starts at Midnight When I started A Face For Picasso, I wondered "how exactly can I review someone's life?". Which, valid, right? But it turns out that it isn't so hard when what you plan to say about the book can be summarized as "I recommend this to all people everywhere". More than recommend, I wish I could require this book for all people everywhere. It's beautifully written, and the story itself is absolutely heartfelt. You can tell that the author poured her soul into telling the world her story, and I wish I could properly express how much it moved me. The author does a tremendous job of writing her story in a way that is beyond engaging. Add to it, she is such a fantastic storyteller that I felt immersed in each moment she tells us about, each feeling she's experiencing. I bought this book as soon as it was released, to share with my whole family. For my son with a craniofacial syndrome of his own, and for my daughter who is often unsympathetic to his struggles. The book also made me realize how imperative it is that I am my son's advocate. That I follow his lead when it comes to surgical procedures, that I always, always keep lines of communication open. As you read Ariel's story, you'll be enraged at how she and her sister were treated, far too often. People can be cruel- not just kids, people, because make no mistake, there are many adults who let these women down along the way. I also loved how insightful the author was- not just about the world around her, but her own traits that she needed to work on. Truly, this story blew me away, and I am so, so thankful to have read it- and to be able to share it with my kids. Bottom Line: Every single human should read this book, full stop. Truly the best memoir I have ever read, by a large margin. P.S.: Did you know that Picasso was the worst? Cause wow, that guy was the worst. Thanks to the author for all of the info so I can properly hate that dude.

  6. 4 out of 5

    mel

    Format: audiobook Author: Ariel Henley ~ Title: A Face for Picasso ~ Narrator: Ariel Henley Content: 5 stars ~ Narration: 5 stars Complete audiobook review I don’t read a lot of memoirs. But when I saw this, I knew I had to read it. I listened to the audiobook version. Here the author, Ariel Henley, is also the narrator. A Face for Picasso is a coming-of-age story of twins: Ariel and Zan, two girls born with Crouzon syndrome. This is a rare condition where a person needs multiple face surgeries at di Format: audiobook Author: Ariel Henley ~ Title: A Face for Picasso ~ Narrator: Ariel Henley Content: 5 stars ~ Narration: 5 stars Complete audiobook review I don’t read a lot of memoirs. But when I saw this, I knew I had to read it. I listened to the audiobook version. Here the author, Ariel Henley, is also the narrator. A Face for Picasso is a coming-of-age story of twins: Ariel and Zan, two girls born with Crouzon syndrome. This is a rare condition where a person needs multiple face surgeries at different stages of childhood. Most of us can’t imagine what they went through. Especially in today’s world, so obsessed with beauty. And what is today’s perception of beauty? Who is beautiful? For most, this is a person with a symmetrical face and some standard body features. Throughout this memoir, we read about their life, operations, and school years. In addition, we learn about the psychological burden of being different, especially in their teen years. Ariel is very open about her childhood memories. She speaks honestly about the negative side, too. The author also explores beauty standards. Her reflections on art and Picasso contribute a lot to the story. The narration speed was faster than usual, but for me, it was perfect. I also like the fact that Ariel narrates her own memoir. Thanks to Recorded Books for the ARC and the opportunity to listen to this! All opinions are my own.

  7. 5 out of 5

    Hannah

    I was not expecting this to be as riveting as it was, but I read the entire thing in a single day. Even as someone whose main reading diet consists of YA, memoir is not an area I'm ever particularly excited about in that vertical, as I think a lot of authors have trouble figuring out what voice, approach, and focus is appropriate for the genre and they either come off as obnoxiously all-knowing or very remedial and patronizing. Henley is a fantastic writer, and I think she successfully focused t I was not expecting this to be as riveting as it was, but I read the entire thing in a single day. Even as someone whose main reading diet consists of YA, memoir is not an area I'm ever particularly excited about in that vertical, as I think a lot of authors have trouble figuring out what voice, approach, and focus is appropriate for the genre and they either come off as obnoxiously all-knowing or very remedial and patronizing. Henley is a fantastic writer, and I think she successfully focused the narrative through her teen mind while still being the sort of older sister adult guiding the reader through, and I really appreciated how she managed things she didn't understand at the time but does now--things that gen Z does already understand, because they are just more comfortable with calling out racism, sexism, prejudice, internalized stereotypes, and more, while Henley, though a few years younger than I am, is a millennial, and we were not given that freedom. That perspective, I think, is one of the reasons I felt so engaged--reassessing your memories with a new understanding but not punishing, hating, or holding your past self to a standard she couldn't possibly have reached is hard! I think the Picasso thread is also amazingly well rendered. I think readers will (and she sets her readers up to) expect the reference to end after (view spoiler)[the mention in the magazine, but she shows how much that single offhand comment really impacted her, not just in a "that hurt my feelings kind of way" but in a "that gave me a lifelong preoccupation and now I have some really high-level, astute things to say about it, so fuck you very much, shut up, and take some knowledge" way that I am very much here for. (By the way, fuck Picasso. You will hate Picasso by the end of this and that is 10000% okay; thank you for taking down an over-celebrated white dude, Ariel.) Another cool thing? No photos. I think adult readers in particular might pick up a book like this and expect to be able to do some sadist trauma tourism or something, but they won't get the chance here. No sensationalism, no "look how bad it was/look how bad it wasn't!" The story is in the text. (hide spoiler)]

  8. 5 out of 5

    Ellen Ladau

    As a person with a visible physical disability, so much of Henley's book hit home. Her post-op descriptions especially brought to mind some of my own experiences such as my eyes being swollen shut from a surgical procedure. On each page, in this beautifully written memoir, you feel her pain (and that of her twin sister) whether they are in physical pain from their extensive surgeries to make their faces more "normal" or when they are being bullied at school. The relationship she had to the art As a person with a visible physical disability, so much of Henley's book hit home. Her post-op descriptions especially brought to mind some of my own experiences such as my eyes being swollen shut from a surgical procedure. On each page, in this beautifully written memoir, you feel her pain (and that of her twin sister) whether they are in physical pain from their extensive surgeries to make their faces more "normal" or when they are being bullied at school. The relationship she had to the art and meaning of Picasso's catalog of work and his abysmal behavior toward women complimented her writing so well and added depth to her story. Highly recommend this book to anyone struggling with body image and/or to anyone who needs to be reminded that there is no normal when it comes to appearance or functional abilities

  9. 4 out of 5

    Librariann

    **I received an Advance copy of this from the publisher, because I am a librarian and librarians are awesome** In my town, 8th graders have an assignment to read a memoir, so I'm always on the lookout for titles that may be suitable for that. Good news: this is a very suitable title. Easy to read, with a strong focus on the author's middle school experience, without any of the simpering "people with disabilities are so inspirational" context. Even better, she talks about the challenges in craftin **I received an Advance copy of this from the publisher, because I am a librarian and librarians are awesome** In my town, 8th graders have an assignment to read a memoir, so I'm always on the lookout for titles that may be suitable for that. Good news: this is a very suitable title. Easy to read, with a strong focus on the author's middle school experience, without any of the simpering "people with disabilities are so inspirational" context. Even better, she talks about the challenges in crafting a memoir when memories and available documentation don't always match. Her depiction of her experiences with her cheerleading team were vividly written, and her experiences with incompetent/biased teachers will be especially poignant for middle schoolers. She also spared no punches when it came to the PTSD and anger she suffered from as a result of her surgeries and the way she was treated day-to-day by adults and her peers. Bad news: the author's attempts to integrate Picasso in the memoir read like a stilted undergrad paper. And while body image struggles and disordered eating was discussed through the narrative, the label "bulimia" was only abruptly mentioned 95% through the narrative, when she was in college. I read it in an afternoon, and I'd definitely buy it for my library and give it to a kid working on the memoir project. But in the end, I wish the writing were a little more polished.

  10. 4 out of 5

    Sage

    4.5 stars. This book was absolutely beautiful. Really really stunning. Incredible writing, and I love how she weaved art history and Picasso (I knew nothing about him but he sounds like an absolute TRASH CAN human) alongside her surgery journey and struggle to fit in and be “normal” in a world that is so cruel to any deviation. Kids are so mean sometimes, my god. It’s not the same, but both my siblings have medical challenges as well (one more severe) and the blatant stares we’d get as children 4.5 stars. This book was absolutely beautiful. Really really stunning. Incredible writing, and I love how she weaved art history and Picasso (I knew nothing about him but he sounds like an absolute TRASH CAN human) alongside her surgery journey and struggle to fit in and be “normal” in a world that is so cruel to any deviation. Kids are so mean sometimes, my god. It’s not the same, but both my siblings have medical challenges as well (one more severe) and the blatant stares we’d get as children (and even now) are just so obnoxious and make me want to fight people. I think it’s how I developed my best stink eye lol like LEAVE MY SIBLINGS ALONE, PEOPLE, and don’t be dicks. The way she writes about her physical and emotional trauma, and that of her twin sister, Zan, was just heartbreaking. I wouldn’t wish for anyone to go through what they have gone through, but I am glad that they had each other to really go through this with, as well as the support of their close-knit family. I really did appreciate the art history bits, as I felt they gave more of a cultural context on what society has typically seen as “beautiful” through the ages, and all of the baggage and complicated historical roots that come with that. This memoir is a deep reflection on what it means to be “normal/typically beautiful,” societal expectations, and one woman’s journey toward self-love and acceptance and making a life for herself.

  11. 5 out of 5

    Her Bookish Obsession

    This book is just fantastic. Ariel Henley is a gifted writer, and A Face for Picasso exemplifies the elegance of her work. She discusses her facial difference, as well as her emotional and medical struggles, in a very open and honest manner. The book, on the other hand, is brimming with emotion. Throughout the novel, I found myself crying and unable to put the book down. Her writing about her trauma emanates maturity. It’s what she calls it. She doesn’t declare she’s “over it,” but she does commu This book is just fantastic. Ariel Henley is a gifted writer, and A Face for Picasso exemplifies the elegance of her work. She discusses her facial difference, as well as her emotional and medical struggles, in a very open and honest manner. The book, on the other hand, is brimming with emotion. Throughout the novel, I found myself crying and unable to put the book down. Her writing about her trauma emanates maturity. It’s what she calls it. She doesn’t declare she’s “over it,” but she does communicate a sense of assurance that the reader can understand where she is on her path as a woman with a facial difference who has been through a lot. Finally, she expertly crafted a piece about herself and her sister. I loved this book and I’m just so happy I was able to experience it.

  12. 5 out of 5

    Jenny Kattlove

    I LOVE this book. Ariel Henley is an incredibly talented writer, and the beauty of her writing shines in A Face for Picasso. She takes a very honest, straightforward approach to her facial difference and her emotional and medical experiences. Yet, the book is full of feeling. I found myself crying throughout the book but also not wanting to put it down. Her writing exudes a maturity about her trauma. She calls it what it is. She is not saying that she is "over it," but she conveys a confidence t I LOVE this book. Ariel Henley is an incredibly talented writer, and the beauty of her writing shines in A Face for Picasso. She takes a very honest, straightforward approach to her facial difference and her emotional and medical experiences. Yet, the book is full of feeling. I found myself crying throughout the book but also not wanting to put it down. Her writing exudes a maturity about her trauma. She calls it what it is. She is not saying that she is "over it," but she conveys a confidence that lets the reader know where she is in her journey as a woman with a facial difference who has experienced an inordinate amount of trauma. Finally, in writing about her and her sister, she expertly balances sharing her own feelings and experiences as separate from those of her sister's. The reader is able to see them as individuals but also as twins (and what is shared between twins). In reading A Face for Picasso I learned so much - and I felt so much. I highly recommend this book for those interested in gaining a unique perspective on the human condition and issues of equity. Thank you, Ariel Henley, for sharing your story.

  13. 4 out of 5

    Samantha

    Thank you to Macmillan Children's Publishing for a free review copy of this book. All thoughts and opinions expressed in this review are my own. A Face For Picasso is one of the most beautiful books I've ever read. Throughout the book we travel through Ariel's journey with her sister Zan who also has Crouzon Syndrome through Ariel's perspective. We learn of what she hoped for, what she was afraid of and the struggles that made her who she is today. I was drawn into this book with its captivating Thank you to Macmillan Children's Publishing for a free review copy of this book. All thoughts and opinions expressed in this review are my own. A Face For Picasso is one of the most beautiful books I've ever read. Throughout the book we travel through Ariel's journey with her sister Zan who also has Crouzon Syndrome through Ariel's perspective. We learn of what she hoped for, what she was afraid of and the struggles that made her who she is today. I was drawn into this book with its captivating writing and heart warming story. I found it read like fiction in the best way. I was completely captivated by this story of two loving sisters dealing with this horrible condition and they had no one to understand what they were dealing with but each other. I can honestly say I have never loved a memoir the way I love this one. There are so many reasons to read this book. There is so much hope and strength held within its pages despite all the pain and suffering Ariel and Zan suffered through. If you only read one nonfiction book this year, I recommend it be this one.

  14. 5 out of 5

    Renee

    "In that moment I rephrased the line that haunted me."- From A Face for Picasso 5 stars Easily one of the best memoirs I have read this year. I loved how she told her story through the lens of Picasso's art and history of mistreatment of woman. She was honest and had a way of sharing her story in a way that made you feel like you were living it with her. I started crying early, (while on my commute on the T) at the fact she kept apologizing in kindergarden for being ugly. There were many sucker pu "In that moment I rephrased the line that haunted me."- From A Face for Picasso 5 stars Easily one of the best memoirs I have read this year. I loved how she told her story through the lens of Picasso's art and history of mistreatment of woman. She was honest and had a way of sharing her story in a way that made you feel like you were living it with her. I started crying early, (while on my commute on the T) at the fact she kept apologizing in kindergarden for being ugly. There were many sucker punches just like that. I wished this book had existed while I was in school still, and it should definitely be required reading. Thank you to the author, publisher, and NetGalley for a copy in exchange for an honest review.

  15. 5 out of 5

    Samantha

    If you want to know what life is like with a facial difference, read this instead of "Wonder." Henley does such a good job talking about her life with Crouzon Syndrome, what it was like to have different surgeries, how cruel people could/can be. I appreciate that Henley mentions she is in recovery with an eating disorder but she couldn't find a way to write about it that wasn't triggering for her or for others. It also discusses our fascination with Picasso and his jerkiness really well. If you want to know what life is like with a facial difference, read this instead of "Wonder." Henley does such a good job talking about her life with Crouzon Syndrome, what it was like to have different surgeries, how cruel people could/can be. I appreciate that Henley mentions she is in recovery with an eating disorder but she couldn't find a way to write about it that wasn't triggering for her or for others. It also discusses our fascination with Picasso and his jerkiness really well.

  16. 4 out of 5

    Wesley

    Thank you to Teen Ink and the publisher for providing me with an ARC in exchange for an honest review. Unflinching and insightful, Ariel Henley’s A Face for Picasso weaves a memoir of beauty, identity, and pain unlike any I have read before. Born with Crouzon syndrome, a condition where the bones of the head fuse prematurely, Ariel and her twin sister grow up with a twofold burden: the ceaseless hostility of a society with strict and rigid beauty standards, and the never-ending stream of facial Thank you to Teen Ink and the publisher for providing me with an ARC in exchange for an honest review. Unflinching and insightful, Ariel Henley’s A Face for Picasso weaves a memoir of beauty, identity, and pain unlike any I have read before. Born with Crouzon syndrome, a condition where the bones of the head fuse prematurely, Ariel and her twin sister grow up with a twofold burden: the ceaseless hostility of a society with strict and rigid beauty standards, and the never-ending stream of facial surgeries necessary just to keep them alive. Told in three segments, the memoir follows Ariel from her vague understanding of the impact of her condition in early childhood to a middle school experience marked by cruelty and trauma as well as resilience, and finally to later teenage years and college as she begins to take control of the influence it has over her life. With the theme of Picasso a unifying thread through it all, Henley explores the immense societal importance of striving toward unreachable female beauty standards and the very real consequences for those who fall so short as to be considered disfigured. The book also touches on eating disorders, PTSD, and anger issues. Henley’s experiences are truly not ones that the majority of readers will understand before reading this book, and they are recalled with striking candor. The physical realities of the major surgeries Ariel and her sister had to undergo every few years – immense pain, long recoveries, reactions to medications – are laid bare in matter-of-fact detail, and she is equally open about the emotional pain and trauma this leads to over the years. Though the novel certainly deals with heavy themes, the reading experience is neither overdramatized nor depressing – though Ariel and her sister have to deal with hardships their peers simply never will, they still navigate the same triumphs and challenges of growing up. Certainly, though, Henley’s is a life the genre of memoir is designed for. As she mentions in the introduction, there are very few – if any – stories about people with extreme facial differences by people with extreme facial differences, who have lived through and understand just how thoroughly it impacts one’s life. The pairing of Crouzon syndrome and western beauty standards for women ensures that there is no part of Ariel’s life unaffected by her appearance, and whether at school, in another country, or walking down the street, there is no reprieve from the difference in treatment. A Face for Picasso also manages to adapt the messiness of life gracefully to the format of a novel. It can be difficult to make a memoir feel coherent and follow a satisfying pacing, but Ariel’s story is thoughtfully centered and organized by the recurring theme of Picasso, the ideas of beauty and ugliness in his works, and the way his life reflects social values around beauty and art. With this underlying thread, A Face for Picasso fits into a beginning, middle, and end without feeling forced. Striking and honest, A Face for Picasso does what memoir is meant to do: provide a vivid glimpse into a life truly unlike the reader’s own and give voice to a narrative missing from the public eye. With astute analysis of the way beauty standards shape the most basic social values and a fascinating coming-of-age story, Ariel Henley’s memoir is not to be missed.

  17. 5 out of 5

    Anais (atrailofpages)

    Wow this book was a lot to take in. Very well written. This is about Ariel Henley who, along with her twin Zan, were born with Crouzon syndrome - a rare condition where the bones in the head fuse prematurely. This book is in three parts. It first talks about when she was born, and her first early years when they had to undergo many surgeries to save their lives and their recovery. Second part is more focused on middle school to high school years and what they experienced going to school and how Wow this book was a lot to take in. Very well written. This is about Ariel Henley who, along with her twin Zan, were born with Crouzon syndrome - a rare condition where the bones in the head fuse prematurely. This book is in three parts. It first talks about when she was born, and her first early years when they had to undergo many surgeries to save their lives and their recovery. Second part is more focused on middle school to high school years and what they experienced going to school and how people treated them. Then the third part was life after high school. This is a heart wrenching story. I did not know about this syndrome until I read this, and I feel a lot more educated about it. It not only talked about the syndrome the girls were born with, but it also talked a lot about people and their views, about body image, and what others think beauty and ugly is. It even talked a lot of about Picasso and the kind of person he really was and how distorted his view was of beauty and women. Reading this took me back to my childhood and when I went to school. Kids are mean, and I had my fair share of bullying and how much everyone viewed beauty as the norm. It’s sad to read this and remember when I was kid how focused everyone is on body image and beauty. And if you’re ugly(to them) then you’re frowned upon. I could never imagine what these girls exactly went through or how they felt, but I do understand how someone may judge someone by their looks rather than the person they are. I don’t think I’ve ever truly recovered from school and how I thought I needed to look because others thought something or someone was ugly or beautiful. It’s sad that people do that. No one should judge a book by its cover. And I think Ariel’s story really emphasizes that and I’m glad I got the opportunity to read this book. Thank you to NetGalley and the author for a free digital copy to read and review.

  18. 4 out of 5

    Brooke

    I was born with Pfeiffer syndrome which is incredibly similar to Crouzon syndrome. When I first found ariel in 2016 on social media, I was so excited to find a gal around my age with a similar looking facial structure and similar experiences. Then a couple of years later when she told me she was writing a memoir, I had no idea how impactful it would be for me. A Face for Picasso spoke to me in a way no other book has done. I had the pleasure of reading all about ariel’s life and experiences whil I was born with Pfeiffer syndrome which is incredibly similar to Crouzon syndrome. When I first found ariel in 2016 on social media, I was so excited to find a gal around my age with a similar looking facial structure and similar experiences. Then a couple of years later when she told me she was writing a memoir, I had no idea how impactful it would be for me. A Face for Picasso spoke to me in a way no other book has done. I had the pleasure of reading all about ariel’s life and experiences while she lives with a visible facial difference. I have never relayed to a memoir more, and reading it was an emotional rollercoaster. To know someone who endured the same struggles as myself, there isn’t a feeling to describe it. A fantastic read! This feels like a book for people like us, the outcasts, and for people who are curious to know what it’s like to live in a world that favors the beautiful when we appear far from it. Thank you, Ariel. I felt so beautiful, unique, heard and understood after I finished the last page.

  19. 5 out of 5

    Saloni Porwal

    As toddlers, Ariel and Zan were diagnosed with Crouzon syndrome- a condition where the bones of the skull fuse permanently. They were the first known twins to survive it. Due to this, they had repetitive surgeries to enlarge their skulls, which largely alerted their appearance. The procedures were physically painful, but this suffering was nothing compared to the emotional pain of being ridiculed for disfigured faces. Thanks to NetGalley and Macmillan Children's Publishing Group for providing thi As toddlers, Ariel and Zan were diagnosed with Crouzon syndrome- a condition where the bones of the skull fuse permanently. They were the first known twins to survive it. Due to this, they had repetitive surgeries to enlarge their skulls, which largely alerted their appearance. The procedures were physically painful, but this suffering was nothing compared to the emotional pain of being ridiculed for disfigured faces. Thanks to NetGalley and Macmillan Children's Publishing Group for providing this e-ARC in exchange for an honest review. When I first requested this book, I didn't realize that this was a memoir (a genre that I enjoy). Before reading, I had a vague idea that this would be a sob story about all the struggles faced by the author, but the book exceeded my expectations. I got hooked on the first chapter, and I loved every bit of the book. The story starts from when they were diagnosed and the impact it had on their loved ones. One of my favorite lines from this book goes, "What hurts more than going through the surgeries yourself is seeing someone you love go through it." The family and friend aspect and makes it more touching and oddly relatable. Unlike some other autobiographies, this one does not portray the writer as a perfect person. Ariel was not understanding and patient with the pain. She was angry, confused, fed up, and said things she didn't mean. This is what I loved about her writing. Her honesty when she wrote how messed up and at times lonely her life was, and how it could have been better with a little more acceptance and a little less judgment. The book is not inspiring because it's about trauma (and neither was it marketed that way). It is inspiring because it's relatable, fun, and nostalgic. Although the twins had their struggles, they tried to laugh at them, show others that it was okay to laugh with them, blend in with others. This read is one of the best and most impactful autobiographies ever. Parts of it can be disturbing for readers below 10, but most readers will love it. Even if you are not a fan of this genre, I think this is worth a read. Note on Picasso- I wish I could give this a five-star rating, but this is where Ariel's writing drooped. The book is named so because of an incident in her childhood that impacted Ariel greatly, but it doesn't have a significant connection with him. There are references to him made throughout the book, which were educational regarding Picasso, but felt very out of place. Rating- 4/5

  20. 4 out of 5

    Kara Ayers

    This is one of those books I'm so grateful it was written and I had the chance to read it. After only about 25 pgs in, I sent my mom a copy. She's an art teacher and I knew she'd enjoy sharing the journey of reading this intersection of growing up with a disability with an overlaying analysis of art (most focused on Picasso). Henley's writing is magnificent. The feelings she evokes-even in a memoir-are deep and real. I felt her anger, frustration, and at times hopelessness with our cruel world. A This is one of those books I'm so grateful it was written and I had the chance to read it. After only about 25 pgs in, I sent my mom a copy. She's an art teacher and I knew she'd enjoy sharing the journey of reading this intersection of growing up with a disability with an overlaying analysis of art (most focused on Picasso). Henley's writing is magnificent. The feelings she evokes-even in a memoir-are deep and real. I felt her anger, frustration, and at times hopelessness with our cruel world. As I listened to her description of facing anesthesia as a child, I found my heart pounding and realized I was holding my breath-just as I did no matter how hard I tried not to as I also went under anesthesia multiple times as a child. I also resonated with her hard-to-explain descriptors of subtle but painful exclusion from certain aspects of growing up or peer acceptance. There's this experience-before you even have words for it-where people will discuss things, like marrying someday or having children someday, and they awkwardly pass over you in these discussions. Sometimes the intention is kindness. They don't know examples of disabled adults who embody these roles and often we, as the disabled kids, don't either. There aren't easy answers or solutions to many of the complex situations Henley faced. As she said, her parents did the best they could in making hard medical decisions for/with her. I hope Henley also deeply knows that she also did the best she could. Her vulnerability and courage to share her own darker moments are admirable. I sometimes wondered if she was a harsher critic of herself than others who had caused her such pain. While I'm sure I related deeply to this book because of our shared coming of age as visibly disabled women, I wish everyone would read this book. I couldn't agree more with Emily Ladau's review that THIS is the book our world, our children need-more so than Wonder, which de-centers the disabled character and mostly exists to make nondisabled people feel good. I hope Henley follows with another memoir about her later adulthood. She's a powerful storyteller and I can't wait to see where she goes from here.

  21. 5 out of 5

    Jessie

    I read Ariel Henley’s writing the first time in Disability Visibility. Her essay “There’s a Mathematical Equation That Proves I’m Ugly — Or So I Learned in My Seventh-Grade Art Class” spoke to an experience I am all too familiar with. People are horrific when it comes to appearance, but even more so when it’s linked to disability. When I got an email saying she wrote a memoir, I immediately bought it. She wrote about her childhood and young adulthood experiences with Crouzon syndrome. Her and he I read Ariel Henley’s writing the first time in Disability Visibility. Her essay “There’s a Mathematical Equation That Proves I’m Ugly — Or So I Learned in My Seventh-Grade Art Class” spoke to an experience I am all too familiar with. People are horrific when it comes to appearance, but even more so when it’s linked to disability. When I got an email saying she wrote a memoir, I immediately bought it. She wrote about her childhood and young adulthood experiences with Crouzon syndrome. Her and her twin sister had over sixty surgeries to expand their skulls or to make cosmetic corrections because their bones fused too quickly as infants. The author recounts a lot of the trauma she experienced from multiple surgeries and bullying due to her appearance. She shared how her trauma transformed into PTSD and bulimia. Throughout her memoir, she connects it back to an article that was published about her and her sister as small children in a French Marie Claire magazine, saying they have faces of a Picasso piece. Ariel Henley takes us through the examination of who Picasso was as a person, his abusive relationships with women, and how he truly felt about the disfigured faces he painted. It’s definitely more of a YA style, but one I think everyone should read. Ariel Henley’s story is so valuable and as a young adult going through the physical changes that came with my rare condition, I wish this existed when I was a teenager.

  22. 4 out of 5

    Julie Anna

    ⭐⭐⭐⭐⭐ Thank you to FierceReads for providing me with an e-ARC and finished copy in exchange for an honest review. All opinions are my own. I don’t usually finish books in a sitting or two, but I could not put A Face for Picasso down. It follows the early life of Ariel Henley and her twin sister growing up with Crouzon syndrome, which causes facial disfigurement. After reading her work in Disability Visibility and hearing that she was writing this memoir, I knew I had to read it. I can’t praise Henl ⭐⭐⭐⭐⭐ Thank you to FierceReads for providing me with an e-ARC and finished copy in exchange for an honest review. All opinions are my own. I don’t usually finish books in a sitting or two, but I could not put A Face for Picasso down. It follows the early life of Ariel Henley and her twin sister growing up with Crouzon syndrome, which causes facial disfigurement. After reading her work in Disability Visibility and hearing that she was writing this memoir, I knew I had to read it. I can’t praise Henley’s writing enough. Her voice is so powerful in this memoir that it’s hard not to feel a range of emotions while reading A Face for Picasso - and with that, emotions that will lead to meaningful change about how we view appearance and treat people with visual disabilities. There’s so much brought to light in this book that many people, such as myself, have not experienced, such as only seeing the media portraying characters with facial disfigurements as villains, being denied opportunities from our looks, or having less trust in our intelligence and skillsets - all because of how we look. I found myself angered when she was treated poorly, saddened when she was bullied, but also uplifted when she founded Girl Talk. There’s a lot to take away from A Face for Picasso and a lot to think on well after reading it. Her journey with her relationship with the artist Picasso was another element to the story that added so much. These chapters do so much to emphasize the experiences Henley has, what she’s felt throughout these experiences, and showed how she’s grown from them too. In conclusion, I can’t recommend this memoir enough! Henley has such a talent for telling stories, and her story is one that more people should know about. You can find more reviews on my blog: www.julieannasbooks.com 🖤

  23. 4 out of 5

    Carin

    Ariel and her identical twin sister Zan are the only ever twins with Crouzon syndrome who have survived. This means that when they were babies, their skulls fused together prematurely. This left no room for their brains or eyeballs or for anything to grow. Throughout their childhoods and adolescences, they had to have surgeries where the bones in their face were repeatedly broken, so their eyes, noses, and other features could me moved closer to where they’d normally be, if their heads had grown Ariel and her identical twin sister Zan are the only ever twins with Crouzon syndrome who have survived. This means that when they were babies, their skulls fused together prematurely. This left no room for their brains or eyeballs or for anything to grow. Throughout their childhoods and adolescences, they had to have surgeries where the bones in their face were repeatedly broken, so their eyes, noses, and other features could me moved closer to where they’d normally be, if their heads had grown. Naturally, doctors are not as good at this as Mother Nature, so the results aren’t perfect. And there are prolonged, agonizing recoveries, and then as they keep growing. their faces get out of kilter again. You can imagine the horrific teasing and bullying they go through in school. They react differently. Ariel is more angry, whereas Zan is more appeasing. Zan’s surgeries have also been more successful and she’s considered “the pretty one.” Kids–and adult!– stare and point and say things to them. They\’re assumed to be mentally deficient. In one article, written about them in a French magazine when they were still quite little, they were appalling compared to the art of Picasso. When Ariel read this article as a tween, it stuck with her. in art class, she was drawn to learn more about Picasso and his art. She was horrified to discover how he abused the women in his life, and a lot of his art was geared towards dismantling them as women, as humans, and taking away the little power they might have had, as beauties. The book is structured around a particularly bad year in 7th grade when their surgeries were devastating. They both suffered greatly in their recovery, and didn’t have satisfying results. It changed both girls permanently. After, Ariel was determined to have more say-so in her own life. Her parents were impressive–working their butts off at hard jobs to afford all of this. They almost never said no (one time their father did, their mother took them to France for a surgical consultation anyway since that’s what the twins wanted.) They never considered the cost or difficulty when deciding what to do for their girls. They were incredibly supportive, as were the girls’ older siblings. An interesting aspect that Ariel contemplates is whether it’s worse to be the sister who got a surgery first or second. Was it worse to see what was looming for you next, or better to know what the surgery held? Was it better to not know what you were up against, or to be able to be more of a support to your sister since you weren’t in recovery yourself yet? What tragic questions to be able to ask. This YA memoir will show kids not only a massive amount of empathy as you never know what others might be going through, but also how giant hurdles can be overcome, and there is light on the other side. Also that kids who are going through issues with disabilities, are still regular kids on the inside. They’re not monsters, and they’re not saints. Sometimes they just want to be cheerleaders and go to college. Very eye-opening.

  24. 4 out of 5

    Karen (kmo.reads)

    Let's face it. Growing up is hard. Middle school years are usually the toughest for any kid,but imagine being a kid with Crouzon syndrome which affects how you look! Crouzon Syndrome is a rare genetic disorder which causes premature fusion of the skull bones. A Face for Picasso is a powerfully written memoir by Ariel Henley. It's about the setbacks, ridicule, bullying and trauma that she and her twin sister, Zan, faced growing up and trying to live a normal life. For me it solidified what I have Let's face it. Growing up is hard. Middle school years are usually the toughest for any kid,but imagine being a kid with Crouzon syndrome which affects how you look! Crouzon Syndrome is a rare genetic disorder which causes premature fusion of the skull bones. A Face for Picasso is a powerfully written memoir by Ariel Henley. It's about the setbacks, ridicule, bullying and trauma that she and her twin sister, Zan, faced growing up and trying to live a normal life. For me it solidified what I have always known - that kids are mean! It also made me look at how disfigurement is portrayed in the media and in Hollywood. It made me think about how we are conditioned to believe that beauty is a certain image and anything outside of that is perceived to be ugly. It is also a reminder for those with any kind of medical situation to make sure they have an advocate. I was intrigued by the Picasso theme and his life throughout the book. When Ariel was in Middle school she felt drawn to Picasso's work. It was there that she learned how he mistreated women and often painted distorted faces. She felt like his art symbolized her disfigured face. I highly recommend this book and think it is one everyone should read! Thank you to Macmillan Children's Publishing Group, Fierce Reads and NetGalley for the #gifted copy of the book.

  25. 5 out of 5

    Katherine Steimle

    A beautifully written memoir. I loved reading about Ariel’s life living with Crouzon syndrome. The connection to Picasso was intertwined throughout the story. This memoir is real, honest, and inspiring. Life and people can be so incredibly cruel and this is her story of navigating through those issues while “continuing to love a world even when it didn’t always love her back”. I highly recommend this book.

  26. 5 out of 5

    Lauren

    All I ever wanted was permission to take up space. To be seen fully. I've never really thought about Picasso and cubism in the context of ableism. I've honestly never spent much time thinking about Picasso in general, but this wasn't a privilege Henley had growing up with Crouzon Syndrome. This memoir goes through Henley's young adult life, from the trauma of numerous surgeries to the struggle with societal expectations of beauty to the cruelty she experienced from both children and adults. This w All I ever wanted was permission to take up space. To be seen fully. I've never really thought about Picasso and cubism in the context of ableism. I've honestly never spent much time thinking about Picasso in general, but this wasn't a privilege Henley had growing up with Crouzon Syndrome. This memoir goes through Henley's young adult life, from the trauma of numerous surgeries to the struggle with societal expectations of beauty to the cruelty she experienced from both children and adults. This was beautifully written and heartbreakingly honest. I don't think my words can do justice to how eloquently Henley writes about her trauma. I recommend the audiobook, which was narrated by the author herself. Thanks to NetGalley for this ARC!

  27. 4 out of 5

    Katelyn

    I don’t know where to begin besides saying thank you to Ariel for a copy of this book, and for writing it. Thank you for educating the world on Crouzon Syndrome (a genetic disorder that causes premature fusion of facial bones), & for sharing your trauma, heartache, and barriers with us so we can do and be better. As Ariel points out in this book, facial differences are rarely discussed. Rather, most people focus on the facial standards that are set by society that are often unrealistic and have I don’t know where to begin besides saying thank you to Ariel for a copy of this book, and for writing it. Thank you for educating the world on Crouzon Syndrome (a genetic disorder that causes premature fusion of facial bones), & for sharing your trauma, heartache, and barriers with us so we can do and be better. As Ariel points out in this book, facial differences are rarely discussed. Rather, most people focus on the facial standards that are set by society that are often unrealistic and have damaging effects to people. As the world becomes more aesthetic-focused, this topic seems more and more relevant especially to young woman as they develop their self esteem and understand body image. 💗 If you’re going to pick up a memoir this year, or next year, or ever, pick this one.

  28. 4 out of 5

    Cassandra Bland

    I absolutely loved this book! It should be mandatory reading for high school students. This was the first time I learned about Crouzon Syndrome and Picasso. I knew of Picasso's art but not his abusiveness. What an interesting comparison Ariel makes between how she feels about her facial appearance and the art of Picasso. I feel the pain Ariel and Zan go through with the surgeries and the remarks from people who see them. I also feel the joyous moments when Ariel receives great news about college I absolutely loved this book! It should be mandatory reading for high school students. This was the first time I learned about Crouzon Syndrome and Picasso. I knew of Picasso's art but not his abusiveness. What an interesting comparison Ariel makes between how she feels about her facial appearance and the art of Picasso. I feel the pain Ariel and Zan go through with the surgeries and the remarks from people who see them. I also feel the joyous moments when Ariel receives great news about college. It is clear the Henley family is very loving and supportive of one another. I think Ariel would be a great author to have present at schools to share her story of strength and perseverance.

  29. 5 out of 5

    Jacqueline

    Many of the disability and chronic illness memoirs that I have read seem inauthentic at best. The author always paints themselves as either a saint with a few tantrums to make them relatable, or a "too fragile for this life" tragic heroine. Ariel Henley is one of the few authors who seems like she's recounting the experiences of an actual human. If I was in 7th grade having major surgeries and dealing with intense bullying from kids and adults then I'd be a bit prickly as well. I'm so glad she l Many of the disability and chronic illness memoirs that I have read seem inauthentic at best. The author always paints themselves as either a saint with a few tantrums to make them relatable, or a "too fragile for this life" tragic heroine. Ariel Henley is one of the few authors who seems like she's recounting the experiences of an actual human. If I was in 7th grade having major surgeries and dealing with intense bullying from kids and adults then I'd be a bit prickly as well. I'm so glad she left in the parts where she was misdirecting her anger. I'm glad that she left her anger in general. This book was amazing and I highly recommend it. Also fuck that shop teacher AND Picasso.

  30. 5 out of 5

    Sharon

    A Face for Picasso is a poignant, heart hitting memoir. Ariel Henley and her twin were born with Crouzon syndrome, which meant a lot of facial and cranial surgeries. It also meant a lot of heartbreak as they realized their differences did not measure up to societal standards of beauty. Henley shares her raw physical and emotional pain, her love for her family, and her sadness (and at times anger) about how others treated her in a manner that will help teens build empathy for others. I appreciated A Face for Picasso is a poignant, heart hitting memoir. Ariel Henley and her twin were born with Crouzon syndrome, which meant a lot of facial and cranial surgeries. It also meant a lot of heartbreak as they realized their differences did not measure up to societal standards of beauty. Henley shares her raw physical and emotional pain, her love for her family, and her sadness (and at times anger) about how others treated her in a manner that will help teens build empathy for others. I appreciated the way Henley wove stories of Picasso (and his treatment and depictions of the women in his life) into her exploration of societal beauty standards as compared to her physical appearance. This provided another layer to her very personal story that would help others relate more. This would be a great book for students to read in book club groups. There are many aspects for them to compare thinking and reactions, connect to their own experiences, and discuss how they might be upstanders for others. Thank you to Macmillan Children's Publishing Group, Farrar, Straus and Giroux (BYR), Netgalley, and the author for early access to this book.

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