CAM 2023 Press Release: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

For Immediate Release
August 9. 2023
Children's Craniofacial Association 

CAM 2023: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

Children's Craniofacial Association celebrates its 19th Annual Craniofacial Acceptance Month this year and we want to highlight how looking different is a human rights issue. From FaceEqualityInternational.org: “Discrimination and indignities are a daily occurrence for the facial difference community. This is a hidden community that has continued to be marginalized, abused and neglected, throughout history. To this day we do not believe the injustice experienced by this unique community has been adequately recognized or addressed by global society.”

This year our theme is “The Future is Inclusive.” We have asked the world to jump on board the #ChooseKind movement, but we want to be clear: being kind is not enough. We want our world to be inclusive.

Understanding our differences is the first step toward acceptance and building empathy for one another. Many of our kids and adults have shared their stories in schools, churches, and civic groups across the country. This year we hope to broaden these opportunities to meet people on playgrounds, in grocery lines, and even behind computer screens–because advocacy is everywhere! We want to end discrimination and bullying based on visible differences through awareness and adopting the language of other disability advocates. To that end, please help us this month by setting aside a segment on your local radio or television news program for a story about a local child or adult with a facial difference or craniofacial condition. We can help connect you with an advocate near you! If you’ve ever been bullied or teased, you can find an empathetic friend in our community. Together, we can end bullying and discrimination, and teach the world how to truly be inclusive. It is not just enough to be friendly, our families want to be included in local activities, social campaigns, find representation in the media, and be accepted for who they are, not what they look like. 

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 5,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.To request free educational curriculum and additional resources, visithttp://www.ccakids.org.

To learn more about CCA Kids and Craniofacial Acceptance Month, local picnics, and other happenings, go to our CAM website for details. 

Disability Reads: "Love, Love" by Victoria Chang

By Kara Jackman

I took Victoria Chang’s “Love, Love” on my trip to Annual Retreat in 2022. (Yup, that was last year, and I am just getting around to writing about it this year.) I also brought my Kindle library along with me, too. I don’t know what I was thinking. When would I have time to read? Well, I thought, this was written in verse form, so how long would it take, right? Second, I always like to have a bunch of books around me for comfort when I am away from home. They are like my adult stuffies!

The story is about an Asian-American family told through the perspective of 10-year old Frances Chen. Her sister, Clara, mysteriously begins losing her hair. Her parents focus most of their time on the protagonist's sister, trying to give her vegetables and teas, purchase wigs, and otherwise keep up appearances as Asian Americans living in the midwest United States. This leaves Nancy Drew-loving, and worried, Frances to solve the mystery of why Clara is losing her hair.

Frances has her challenges, too. At school she is bullied, her friend stops spending time with her. She feels very different and very much "the other" in her mostly white elementary school. While times are tough for Frances, she does have one saving grace: tennis. She loves to play, and is quite good. A friend’s coach recognizes her talent, and she begins practicing at the bubble. Soon she must tell her parents about her interest in the game, after being offered an opportunity to play in a local tournament.

While all this is happening, Frances takes lunch in the school library, and begins reading with her friend about hair. They learn all about it, the science of it, what it is made of, and how it grows. At home, she keeps tabs on her sister, Clara, and eventually ventures into her room to learn, discover, and solve the mystery of Clara’s hair loss.

If you don’t want me to spoil the ending of the book, please stop reading here. Frances discovers that Clara has trichotillomania, by reading her diary. Trichotillomania, or hair-pulling falls under the umbrella of obsessive compulsive mental disorders. I, and many like me, some of whom are in our community, struggle with the compulsion to pull our hair. I have had many one-on-one conversations about my lifelong struggle around this issue. I feel this book is a great way to begin some dialogue about it among people in our community.

Frances handles learning about Clara’s trichotillomania in such a beautiful way, without words, but signing letters to her across the table, proving and demonstrating a way Clara can constructively use her body for connection, and to be seen. Frances signs “I K-N-O-W/ Y-O-U/ P-U-L-L O-U-T/ Y-O-U-R/ H-A-I-R.” Clara responds by telling her not to tell her parents. The last page of the book sums everything up nicely. “I still don’t know why Clara/pulls her hair out/I still don’t know/if she will tell my parents/but somehow/I know/it’s not/my secret to/tell/somehow I know that/not even the snow can/bruise us anymore/because somehow/we know/we are each no longer/fully alone.”

In this book, there is so much suffering in silence, and extreme feelings of isolation despite living and being around people. We in the CCA community know how this feels when we are in our home communities, or at school among our so-called peers. Yet, when we are together at Retreat, let’s say, we experience what it feels like to be seen for who we truly are inside, and to know we will never be alone again. This is the message of this beautiful book by poet Victoria Chang. Perhaps, there is no coincidence in me packing this book for retreat last year after all.

Chang grew up in the midwest, too. Though she admits not being very good at tennis, she feels her experiences growing up were similar to Frances. As she writes in her dedication, “To all the bullied kids in the world: I see you. To all the kids who suffer: I see you.” Chang wrote a tremendously beautiful story in verse, about mental illness, family, and belonging. I am so grateful to have read it. I encourage you to do the same.

Many thanks to my colleague at Boston University, Megan Sullivan, for suggesting this book through a syllabus her sister created for a class at University of New Hampshire. You both are truly "my people!"