Materialism and appearances permeate throughout our lives, from childhood, to adolescence all the way up into adulthood and old age. As kids we judge each other based on the ‘cool’ things we have or how we look, as teenagers in high school that becomes even more prominent. How do you dress? Are you popular? Do you have the newest iPhone? Do girls/boys like you? We are inherently judged and placed in a social hierarchy. And when we grow up, it’s the same thing albeit on a slightly less obvious level.
If it’s tough blending in with the crowd as a ‘normal’ kid, how would life be if you were 1 in 50,000 people. One of a handful of people who have a rare genetic disorder that alters your facial features.
Here is the story of Jono Lancaster who overcame Treacher Collins syndrome to become an inspiration and hero to many children and grown-ups alike.
Treacher Collins syndrome is a rare genetic disorder that leaves individuals missing certain facial bones and almost always hearing loss. But to hear Jono talk is both inspiring and motivational: “I have no cheekbones, and so my eyes dip down. I love my little ears, they don’t get cold at night. But I do need hearing aids.”
Jono’s positive attitude is prevalent in everything he does. He considers himself one of the lucky few since most severely inflicted individuals with Treacher Collins need help with eating and breathing. He’s met children who have gone through over 70 surgeries to make their lives a little easier.
He was abandoned by his parents 30 hours after being born. When his mother Jean saw Jono she immediately fell in love. Throughout the years, Jean and Social Services did everything in their power to reconnect with Jono’s birth parents but to no avail.
Jean played the role of mom and dad perfectly. At age 7, Jono realized he wasn’t like the other kids. Jono said: “They’d pull their eyes down, or run away, yelling that they’d catch my disease. I’d ask Jean why they did that, and she’d cry. Then I felt guilty that I’d made my mom cry.”
As he grew older, the bullying got worse. He began to resent his appearance and avoid anything that would show his reflection. He revolted, rebelled and hated his birth parents for leaving him, his ‘friends’ for berating him and most of all himself for looking like that.
The turning point came when he began working at a bar. He thought the customers were laughing at him so hard that they couldn’t even order their drinks. The next day Ben told him to ‘suck it up, and get back in the bar.’ Things slowly began to change.
A skinhead walked into the bar. He asked Jono why he looked like that and Jono explained his condition and mentioned he needed a hearing aid. The man joked about how lucky Jono was because his own wife wouldn’t stop ‘yakking.’ Jono experienced a shared laughter, not one that was directed at him. He began to focus on the positive.
Now, Jono travels the world to spread a positive message to those diagnosed with Treacher Collins. “My parents still want nothing to do with me,” he said in a speech, “What’s changed is my attitude, and that’s so powerful. […] I wouldn’t change any of it. My attitude was more disabling than anything. With the right attitude, you can achieve anything.”