Book of the Month: Facial Disfigurement

When I first met with Cassandra from the US, she immediately struck me as someone who was very energetic, social, and funny. As we spoke, I learned about her experiences within and beyond the Human Library. Being born with a facial disfigurement, diagnosed with Proteus Syndrome, with only 300 cases in the world, her appearance is the first thing people notice when meeting her. 

Choosing Awesome

Cassandra when she was 3 years old.

Usually, people stare at her without asking questions. Although that’s something she can’t escape, she says, “Since this has been my whole life, I don’t know any different until COVID. When we all slapped on masks, and I finally got to see what it was like to be like the rest of you. But I kind of missed it. Nobody paid attention to me, and I love attention.” 

When she was younger, she realized that people were always going to stare, so she chose whether she would make people remember her for her looks or the choices she made in her life. In that moment, she chose that people should remember her for being funny. 

Cassandra points out that nowadays, it’s easy to hide from everyone in our society: we can work from home, order food online to our doors, and never see any people. Though she’s a people person, a life without being social and in the spotlight is a life very far away from hers.

Being an Open Book

Since 2021, Cassandra has been active in her local community as a Book. There, she worked with the publishing team for a while and actively participated in events. Later in 2022, she also joined the Human Library Online. 

Even people in her personal life can be hesitant to ask questions. They may be curious, but they often hold back. With the Human Library, strangers from all over the world have a chance to ask questions that her friends won’t even ask, even though they wonder. It’s something she wishes people in her life would apply, and that everybody would be open to asking questions.

Having a background in teaching, Cassandra values the opportunity to share knowledge drawn from lived experience rather than textbooks. Readers want to learn from her experiences, and together with them, she can find out what they want to know.  

Different questions, new perspectives

As she’s also active on Human Library Online, where she gets to meet people from different professional backgrounds who are interested in learning more about her experience to strengthen their knowledge.

Cassandra points out that “I would say the online sessions are different [from the in-person events]. I’ve noticed, especially recently, that my readers are joining me as part of work training or their education, so they often come with more specific questions. I think that in one of my recent online readings, someone was a speech therapist, so speaking to me was a really interesting thing for her as part of her job.”

With online Readers signing up to read her specifically, Cassandra finds that they often come with something particular in mind. Their curiosity guides the conversation, often leading her into topics she hasn’t reflected on before.

This stands in contrast to her in-person experiences. Having mostly attended events close to her home in the US, she often meets people with similar perspectives. Online, however, she connects with Readers from across the world, bringing fresh questions and new ways of seeing her story.

Cassandra on the beach with her family.

Either way, “I love that it’s a give and take.” Cassandra says. “Instead of me presenting my experience, it quickly becomes a conversation. Unlike with real books, which are really just one-way. Human Books it truly is a conversation.” With the possibility of having an open dialogue, she, as a Human Book, opens up for mutual understanding and new perspectives to both parties.

After our interview, I found myself thinking about how I could be “choosing awesome”. With Cassandra’s perspective, and through her life and the Human Library, she chooses to share with others how to make a conscious choice not to be afraid of others. She invites others to be curious about her story, in their exchange, something could shift for the Reader – not only in how they see her but how they see the world around them.

You can read Cassandra online and support the Human Library at the same time. Click HERE for more.