STAND IN THE PLACE WHERE YOU LIVE: "I love the word 'upstander.' For me, it means when you experience an injustice like someone being bullied, you take a stand to make it right. When you see someone sitting alone in the lunchroom, you choose to sit with them. When you see a child being picked on, you take that child out of the situation and ask if they would like to walk to class with you."

How I Found My Voice

BY DINA ZUCKERBERG

As I stood before a crowd of 100 middle school students presenting my talk, I felt a range of emotions: Elated. Vulnerable. Nervous. Apprehensive.

I openly shared my story of growing up with a craniofacial condition and all the struggles that came with it, especially at school. I talked about how I sat alone on the school bus and in the cafeteria. I revealed how I was teased and picked last for team sports in gym class. The kids said I had "cooties." I shared how I wished I had upstanders in my life, people who stood up for me.

As the Director of Family Programs at myFace, I had come to this school to talk to the students. At that point in my career, I had just begun to visit schools and share my experiences with students.

However, if anyone had told me then that I would be revealing my past to these particular students and loving it, I would have said, "no way, you're crazy." Especially since I had been a student at this very school from kindergarten through the ninth grade. And I was describing how I was treated at this very place. I was born with a cleft lip, hearing loss, and no vision from my small left eye. From the time I was three, I wore a hearing aid. I also had six surgeries, years of orthodontics and speech therapy. Although I had challenges, through my unwavering determination and support of my parents, I continue to be unstoppable. I can drive a car, ski, ride a bicycle, play the piano, and more.

The pull to visit schools and present my story came after reading the young adult novel Wonder, by R.J. Palacio. The book centers around Auggie Pullman, a ten-year-old boy born with Treacher Collins syndrome who is homeschooled until the fifth grade. "I won't tell you what I look like, but whatever you are thinking it's probably worse," says Auggie. Throughout the book, Auggie grows to experience his own power as his life transforms.

I so deeply connect with Auggie when I think of my own middle school experience. The more my voice was silenced in school, the more powerless I felt. That caused me to discredit what I had to share and I withdrew.

Yet, sharing my stories with the students has helped me transform and find my voice. I feel so strongly that I never want any child to experience what I did growing up. I have grown to understand how I needed to use my voice to educate others. And the more comfortable I have become to divulge how my voice was silenced, the more I can make a difference.

When I visit schools, I share how I wish I had an upstander. I love the word "upstander." For me, it means when you experience an injustice like someone being bullied, you take a stand to make it right. When you see someone sitting alone in the lunchroom, you choose to sit with them. When you see a child being picked on, you take that child out of the situation and ask if they would like to walk to class with you. If you see someone standing alone, a simple smile and "hello" can make all the difference.

UPSTANDER: (Clockwise, from top left) Dina held by her older brother; Delivering her inspiring message to students during a myFace event; and with myFace patient Anibel, who was born with a condition called Nager's Syndrome, a very rare syndrome related to Treacher Collins Syndrome.

Since that school visit, I have shared my story in over 150 schools, reaching more than 35,000 students through myFace. A non-profit that supports children with craniofacial differences, for 70 years myFace has worked with patients and families to provide comprehensive critical team care. Every day, we work to deliver support, education and raise public awareness.

Many times, after presenting my speech, the students cheer and give me a standing ovation. And I think of Auggie's wise words, "Everyone in the world should get a standing ovation at least once in their life because we all overcometh the world." Sometimes I still can't believe that I am sharing my deeply personal story and the message of choosing kind and what it means to be an upstander. AND I continue to love it. Yet here I am, wanting to visit more and more schools and connect with students because I love seeing the impact that I have on them. As much as I teach them, they teach me so much too.

In fact, myFace even designed a whole program, The Wonder Project, which we can make available to schools. It includes an anti-bullying virtual assembly, activities and lessons centered around compassion and empathy, along with inspiring stories from kids with craniofacial differences. Also, I look forward to the opportunity to virtually visit your school. "Courage. Kindness. Friendship. Character," writes Palacio in Wonder. "These are the qualities that define us as human beings, and propel us, on occasion, to greatness." I think of the journey that I have taken so far and how it embodies so many of those qualities. In the process, I have learned so much about myself and grown in ways I could never imagine.

Looking back, I wish that kids didn't tease and exclude me when I was growing up. I wish that I didn't need to have surgeries. I wish that things weren't so hard. But if not for those experiences, I wouldn't be the person who I am today. And then I think, maybe I am exactly where I was meant to be. •

To learn more about the myFace Wonder Project, please visit myface.org/wonder

ABOUT THE AUTHOR:

As Director of Family Programs at myFace, Dina Zuckerberg brings her life experience growing up with a craniofacial difference to the programs she helps implement for the individuals and families they serve. Whether it's through their emotional support groups, online educational series, family networking events, or public awareness initiatives, her goal is to advocate for the craniofacial community and make sure their voices are heard. She wants everyone with a facial difference to know that they are not alone.