Youth Spotlight: Ian Bibler

“Have empathy for others, as you do not know what they have gone through.” -Ian Bibler

This month's Youth Spotlight is Ian Bibler. He would like to share his story because he believes it will raise awareness about the fact that being seen reduces isolation and builds community. His story might help others heal and find solutions! He’s been speaking to fourth and fifth graders across the country when they finish reading the book 'Wonder' as part of the Be Kind campaign and curriculum attached to 'Wonder.' Read more about Ian in his own words...

"Hi Everyone! My name is Ian Bibler. I was born with Treacher-Collins Syndrome, or TCS. Treacher-Collins Syndrome is a rare facial birth defect. It only affects one in 60,000 babies born. You can look at me and see that I look different, especially around my eyes. Everyone looks different, of course, but what is not as obvious, is what you don’t see.

I don’t let people see my deformed ears. Yes, my hair is FIRE, but I’m afraid to let my peers see my tiny, closed ears, or that because of their malformation, I have two implanted rods to connect my hearing devices. My hearing devices are amazing, but without them I am profoundly hearing impaired. I also don’t like to do things when I can’t wear them, which includes any water activities with friends.

What you also can’t see, is that my condition includes an airway issue. I currently burn all of my calories to breathe, and I stop breathing multiple times in my sleep. The result of this is the need to have a very serious surgery every few years to grow the bone and expand my jaw. I have traveled to Ohio throughout my whole life to be seen by my craniofacial surgeon. The differences that you see are not just aesthetics, appearance, or looks. This means that there is depth and layers of TCS. This requires others to have empathy, to put themselves in someone else’s shoes, to try to understand that a person can go through much more than what we are able to see at a glance.

I’ve had 27 surgeries in 16 years. Other kids living with TCS, who are born with more severe presentation, may have gone through 50 or more surgeries by now. I have learned that there is always someone who has a harder struggle. So even I need to have empathy towards others.

Empathy is the avenger to selfishness. As teenagers, we are commonly selfish. But that doesn’t have to be the “normal.” Empathy spreads love, kindness, and confidence. By receiving empathy in each town that I have lived, I have received all of these gifts.

Receiving empathy has given me the courage to share my story today.

I challenge everyone who is listening to live with an empathic heart and mind towards others, whether they look different or sound different. If you do this, you will be a difference-maker one person at a time. I have more major surgeries to go. I also have more confidence to gain, but I am not anxious about my future. I am able to ignore the many stares when I go to new places because I have been filled with empathy and acceptance by others. I am Ian and this is my story!"