Heart Series: Ariel Henley - A Face for Picasso

In this month's issue of our beloved Heart Series, we interviewed Ariel Henley –the author of A Face for Picasso. A book that narrates the story of the author and her twin sister and their lives with Crouzon Syndrome. It is undeniably true that our appearance determines how we will navigate the world in life. From the day we are born, our experiences will be shaped in our social circles, career, relationships, etc. Inevitably, our appearance shapes who we are at first encounters. In the social media world, as we progressively build conversations around what “normal” means, we are also learning that “normal” is just an idea. It is a hypothetical idea that does nothing besides create gaps between people. However, we are here to build bridges between us, and Ariel has just built one of her own. For herself and the surrounding community.

"A Face for Picasso is about the story of my twin sister and I, growing up with Crouzon Syndrome, which is a condition where the bones in the head fuse prematurely. Nobody in my family had it, so it took a while for them to figure out what we had. At the age of eight months old, we started having surgeries in our head and face, and it changed what we looked like. I grew up never really having a clear understanding of it."

If we lived in a society where everybody had Crouzon Syndrome, the ones who lacked that condition would be considered different. They would suffer all kinds of discrimination and uneasy approaches from those who aren't familiar with their distinct looks. Which is exactly what happens in today's society towards people with not only Crouzon Syndrome, but people with all sorts of physical differences and disabilities. What we consider normal doesn't exist anywhere else but in our minds only. 

"Growing up with a face that looks different, that is constantly being judged by. Everything was because of my face. And so, there was no permission, no room to be bad at something, to learn something. I always felt like I had to be better than everyone else just to be considered equal. Because of the way I looked, I always had to compensate."

From a place of accountability, we all share the responsibility of learning from each other's differences, of how to treat people equally in spite of their appearance. However, is it possible to also share the burden of living life without asking permission every time to walk into places without the unspoken obligation to explain why we look the way we look? If I enter a room filled with people and, somehow, they seem uncomfortable with my appearance, why is it always my job to explain my existence in order to make them less uncomfortable? Can it be the other way around? Can the people in the room have the responsibility and do the work of making me feel welcome and equal? After all, aren't we all different?

“You look at people and what you look like is what you are.", Ariel observes.

When we encounter something that doesn't look like what we have learned as “normal”, there is an urgency to categorize it, so it doesn't look as unfamiliar anymore. We need to connect right away, to fill the gap between the known and the unknown. Earlier in their lives, Ariel says that she and her sister were interviewed by the French edition of Marie Claire. What, at first, sounded like an incredible opportunity turned out to be an issue.   

"When this article came out, there was a line in there that said that our faces resembled the work of Picasso." 

The comparison with Picasso's asymmetrical face paintings landed painfully. Even though they didn't fully understand what that meant, they knew they didn't like it, Ariel recalls.

As kids, we haven't developed yet the emotional tools to understand what is going on. How was that for you?

The journalist wanted to meet with us, and for that interview, to associate it with something the readers would be able to relate to was understandable. It wasn't understandable at that time though, no. I was mad. And that's another thing that is not explored a lot.

We don't talk enough about mental health issues. We don't talk enough about the importance of holding space for all sorts of feelings. Being angry, or sad, or scared is all part of the same process: healing begins with acknowledgement. Ariel not only had to face her own experience, but also witnessed her twin sister go through the same surgeries and major changes. 

How is your relationship with your twin sister?

It was really hard to watch someone you love, someone you feel like it's the other part of you especially when you are an identical twin, go through something like this was horrible. I think that was actually worse than experiencing it because there is nothing you can do. We had surgeries at the same time a lot, we would wake up from surgeries and ask about each other first thing. She was very supportive of me writing. We are very close."

As a child, Ariel recollects she couldn't develop a sense of self because her face was always changing.

"It was hard to connect to a face that was always changing. I lived in denial a lot. I think a big part of why the Picasso painting for example made me so upset was because it acknowledged something I really didn't want to acknowledge. I could talk about surgeries but, to talk about how I was fundamentally different from other people made me very upset because I was not ready to confront it. I did not understand it. Mental health care in general has come a long way since I was a little kid going through surgeries and having my face change. The mental and the emotional aspects were not really addressed."

Our body is our nest, we have to live in it. We must love it. It is the only house in which our mind will reside. Although mental health plays a crucial role when it comes to self-love and self-acceptance, we don't talk about it enough. The path to self-knowledge is also the path to healing.

"The more that I have learned, the more I stopped apologizing for who I am.", Ariel concludes.

Ariel just finished her novel— A Face for Picasso, a title her editor suggested, and the author embraced it. Her book will come out this November, but it is already available for pre-order. The book centers around two major surgeries that the twin sisters had the summer before seventh grade that changed their look  a bit again. 

Screen Shot 2021-04-25 at 8.20.27 PM.png

How did the idea to write A Face for Picasso come to life?

I knew that I wanted to write this book and I have been working on it since I was twelve. Writing it is the one thing that got me through life up until this point. 

The entire process of creating art is art. Is it the role of art to provide as entertainment only or, is it the role of art to deliver the entire story behind someone's creation? When we see the artist's final product, a bridge presents itself. This bridge may connect us into the world of a detailed life that we, the audience, are not aware of yet. If we allow ourselves to learn the whole story behind a piece of art, we can actually cross the bridge from enjoying a piece of art to experiencing it.

"I wanted to make my story more palatable. Physical difference and disability are something that is not explored a lot and people are not comfortable with it. There is this pressure to, even when you are different, to seem as normal as possible still."

In a world predominantly normal (gigantic quotation marks in the air around the word normal), to find a community we can relate to is key. That is how we realize that, after all, we are not alone in this. A Face for Picasso is not only a compilation of Ariel's lifetime creative writing work, but also sheds light on one of the greatest truths in life: representation matters. The author recalls growing up not knowing that there were other people with the same condition as she and her sister. When she found community, she also found herself.

"The more I learned about other people's life stories and their experiences and met other people with other craniofacial conditions even, I found a community and an acceptance that I didn't know it was there. It made me sad that I had spent so many years and that other people spent so many years thinking that they are alone when they are not."

The legacy of a writer often reflects what they have acquired in life. A sense of belonging, relationships, challenges, answered and unanswered questions. Ariel brings to life A Face for Picasso as a result of her own journey of deep searching for something bigger than life. She would hope, during her creative writing process, that we would find something great in our own journeys, too.   

"I learned a lot about myself. I feel like I couldn't rest until I was done with it. I have wanted to write this for so long and I have wanted for people, especially younger people with craniofacial conditions or with Crouzon Syndrome, to have a story that they could relate to, too. Hopefully in some ways. I hope other people's journeys are positive."

After going through all these experiences in life, who are you?

I'm still working through that a little. I have got to the terms of not being what I look like, I have always known that I am a person, not a face, and now I am trying to start to embrace that, and I hope that continues. I am passionate and outspoken, and I get angry, but I'm learning that it's ok to be angry. It's ok to get mad when things are wrong in the world, to get mad about injustice whether it is toward yourself or someone else. It is ok to say what you need and what you deserve and to know that you are a valuable person, and you deserve to take up space and if other people want to make you feel bad or want to shame you for something, that shame is not yours to carry."

What would you say to a younger person with Crouzon Syndrome?

There is nothing wrong with you. If other people want to make you feel bad or want to say that there is something wrong with you, that is not your problem. As hard as it is right now, you will come out of this.

They say the eyes are the window to the soul. During the entire interview, Ariel's eyes expressed kindness. The type of kindness that moves every soul into purpose. As a writer, it is quite wonderful to watch someone building a legacy for others with such devotion and generosity. Ariel's written work enables us to look within ourselves and search for answers and meaning. It teaches us that we must embrace the journey we are in and move forward. One page at a time.