By: Maria Luisa Mendiola
In honor of September being Craniofacial Awareness month, I want to introduce you to Ariel Henley, equal parts writer and activist for the disfigurement community.
Ariel has crouzon syndrome, a rare craniofacial disorder where the bones in the head fuse prematurely. Knowing her advocacy work, I decided to jump in and ask how she handles when strangers stare at her. “I try to be patient and understanding,” recognizing that sometimes it is not about her facial difference, but other times when the staring is incessant, she asks them “I am sorry, can I help you?”
“I don’t owe anyone an explanation,” she rightfully ascertains. Yet Ariel was not always this confident in her stance. Growing up her parents usually did the heavy work when they would go to public spaces and people would stare. “My dad would make a joke and wave at them and say Hi!” She also remembers how her twin sister and her had a code phrase, “feeling like a celebrity” and when they would say it, immediately, her parents would understand that they did not feel safe and should leave. Ariel has a point; people that look differently are three times more likely to experience assault.
It was not until recently that Ariel realized that while their parents were able to ignore some of the staring, they were constantly getting questions from her classmates’ parents. “My mom was on crouzon-syndrome awareness 24/7.” She regrets that her mom had to go through that and now puts the onus on parents, whether they have experience or not with disfigurement, to educate their children on this topic.
When asked if her parents fall in the overtly protective or the laid back camp, she admits that both of them belong to the later. Her parents never hid them away, quite the opposite Ariel and her sister were always encouraged to live their truth. She remembers a childhood filled with ballet practice and swim lessons. Ariel does remember, however, her mom and sisters’ effort in dressing her twin sister and her like little dolls. “I guess in a way they wanted us to look over-the-top adorable to distract from the facial differences.”
When asked when she knew she was different, Ariel admits she doesn’t know. She doesn’t remember a time when her parents sat her down to discuss her diagnosis. “I wonder if my condition wasn’t as visible, if it would have been different,” she admits. “I knew I was different, but I didn’t feel different.” When her mother recently asked her if while growing up she ever felt unwanted or unloved, Ariel unequivocally replied no but added that if anything, her difference just wasn’t addressed enough. In an effort to normalize their children’s experience, her parents didn’t understand that their daughters were part of a different group altogether, a marginalized group. This is a common occurrence in households where the majority doesn’t have disfigurement.
Ariel and her sister, Alixandria, went through more than 50 surgeries by the time they were 18 years old. When asked how they would prepare for the big day, she remembers going out to dinner with her family or her parents preparing their favorite meal. She remembers asking anesthesiologists and surgeons alike, all kinds of detailed questions about the procedures, regardless of how graphic their responses were. “This was my parent’s and our doctors’ way of giving us control in situations that were not optional,” she concludes.
Undergoing multiple invasive surgeries at such a young age, makes me think that I am interviewing a superhuman. Surely, these surgeries have made her a risk-taker and positioned her to live her life to the fullest. Ariel has now taken the biggest risk yet, writing a book about her experiences. In essence, reliving her past and taking not only her twin sister and herself for a ride, but her entire family. One person taking apart memory by memory, untangling the trauma and healing her family in the process. That to me is the definition of a #migamuse.
Ariel Henley’s memoir, A FACE FOR PiCASSO, will be published by FSG/Macmillan in Winter 2021.
Great article about my new pal onFB.