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Beauty

Book Review: "A Face For Picasso" and the Meaning of Beauty

This memoir is the representation I needed growing up with facial disfigurement.

Key points

  • Ariel Henley's new memoir about growing up with Crouzon syndrome explores disfigurement, beauty, identity, and trauma.
  • Henley and her twin sister were born with Crouzon syndrome, a rare craniofacial disorder in which the skull bones fuse too early.
  • Henley points to a need for health and mental health care providers to recognize the psychological impact of facial disfigurement.

Ariel Henley and her identical twin sister, Zan, were born with Crouzon syndrome, a rare craniofacial disorder that means the bones in the skull fuse too early, affecting its growth. As is frequently the case for people with rare diseases, they went undiagnosed for several years while her parents sought medical opinion after opinion. Getting a proper diagnosis meant that they could have life-saving surgery; it also meant that their appearances would be forever changed (and changing). As their brains continued to grow and develop, their skulls would not expand to fit. Without a series of skull-expanding surgeries, they would have experienced brain damage. The condition itself causes pain and disfigurement, and so does the treatment. These surgeries involved cutting open parts of the skull and facial bones to expand them, inserting metal plates and screws, then subsequently turning the screws to expand their faces.

Kathleen Bogart
Kathleen Bogart holding "A Face for Picasso"
Source: Kathleen Bogart

Trauma of Others' Reactions

A Face for Picasso, Ariel Henley's new memoir, emphasizes that others’ reactions to the various incarnations of her appearance were the most traumatizing aspect of her condition, causing her to deeply question the meaning of identity and beauty. With each life-saving surgery the Henley sisters endured, their appearances changed drastically. They didn’t recognize themselves in the mirror or each other. Idiosyncrasies of the surgeries and healing also caused the once-identical twins to look increasingly different from each other. Although they were the same people, the way they looked to themselves, each other, and the rest of the world was in flux during a crucial time in identity development.

Henley's middle school teacher gave her feedback that she might have a future as a writer. In an interview, she said,

I held onto that comment for years, and that is when I decided I want to write a memoir and share my story. After that, even when I didn’t want to do something, or I was feeling anxious about an event, I would tell myself, "No, it’s a story for the book." It helped me focus on something bigger than myself and gave me the courage to show up, to participate in life even when I was scared all the time. People made me feel like I didn’t belong anywhere, so this was a way to take ownership of my story.

As a person who was born with another rare craniofacial condition, Moebius syndrome, I longed for narratives that represented my own experience growing up. I only wish I could have read A Face for Picasso sooner, during my YA years. Like Henley, I discovered writing in middle school as a means of self-expression when it seemed that few others understood me, and when I could not find people like me in books. We also share the same passion for activism through representation of people with disabilities.

Focus on Young Adults

A Face for Picasso is marketed to YA audiences, which surprised me, because it reads like an adult memoir; Henley’s writing is mature and wise. However, as Henley notes, young adulthood is a particularly difficult time for people with disfigurement, in which beauty, identity, and fitting in feel of utmost importance. I have found in my research and personal experience that this is an especially challenging developmental period to have disfigurement. The memoir focuses on this period in her own life and, by doing so, provides the representation many young adults with disfigurements need at that time in their lives.

The title A Face for Picasso refers to an article written about the Henley children in a major magazine that compared their faces to Picasso’s cubist paintings. Henley ponders this stigmatizing label over the course of the book, and it frames her inquisition of beauty, pain, and trauma. Henley describes Picasso’s history of abusing and objectifying women. His cubism was meant to shock people into considering the underlying meaning of beauty and pain. In this way, she drew parallels between Picasso’s objectification and abuse of women with her own experience in the world:

Zan and I were in an abusive relationship with the world around us. We were mocked and humiliated and put down…and like with many abusers, we were made to believe it was our fault.

Henley and her sister were targets of numerous instances of bullying, discrimination, and ableism. Often, the bullying was enacted by children, but several times it was engendered or supported by adults as well. Henley missed a substantial amount of class during middle school while recovering from a necessary surgery, and, despite keeping up with lessons the best she could, she was noticeably behind when she returned. Observing Henley struggling in his class, one teacher falsely assumed that she was unintelligent because of her appearance.

Disability Spread

This phenomenon is called disability spread, and it happens frequently to people with disfigurement and disability. When people notice a disability, they may erroneously assume that the disability has a more widespread impact on the person than it does. For example, someone may speak loudly to a blind person as if the blind person is also hard of hearing. People with facial disfigurement are often misinterpreted as having intellectual disability as well. Sadly, this happens to many children with disabilities who must miss school because of flares or medical appointments: “I just wanted to stop being punished for having the surgeries I needed to keep me alive.” Finally, after years of advocacy, Henley’s family discovered that the school system could provide a tutor to help the sisters stay on track while healing from medical procedures.

Psychological Implications

Henley’s trauma resulted from physical pain and fear for herself and her sister, combined with the pain of society’s rejection. Despite having a supportive family and access to excellent doctors, these adults lacked a complete understanding of the psychological impact of her experiences. Even some mental health professionals did not seem to grasp how to support her. Unfortunately, this is all too common because there is little training for mental health professionals on facial disfigurement.

Fortunately, she recounted helpful experiences with mental health professionals as well. One therapist offered a useful metaphor for trauma as a mug filled to the brim with hot coffee. If a person walks around with trauma built up inside, it may spill out and hurt the person and those around them. Henley realized her whole family was walking around with overflowing coffee cups while simultaneously trying to help each other. She notes that writing this book helped her to process and make meaning in her trauma, dumping out her coffee cup to make room for the rest of her life.

This memoir is the representation I needed growing up with facial disfigurement. But it's not just for people like me. Anyone who has felt pressure to conform to unrealistic beauty standards—that is, everyone—should read it. My hope is that Henley’s memoir will start a conversation about beauty and facial equality that will make society a less traumatizing place for people who are limited by beauty standards.

References

Henley, A. (2021). A Face for Picasso: Coming of Age With Crouzon Syndrome. Farrar, Straus and Giroux.

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