Alec Saunter-Williams is an open book – one filled with adventure, fantasy, heroes, and mythical creatures.
The eight-year-old has a personality that would shine through a vault door, dreams enough to fuel eight lifetimes, and a message for the world.
“See beyond my face.”
Alec was born with Goldenhar Syndrome, which is a congenital condition characterized by abnormal development of the eye, ear and spine.
Alec has one ear, but a fully functioning cochlea (inner ear), so he uses an external device to hear on that side. His jaw, neck, and eyes are also impacted. He is among a group of children and adults with facial differences who have become advocates for and clients of a national charity called AboutFace.
Recently, he was in a video campaign with five other children, each of whom asked others to see beyond their face and their difference.
“I think it will be very influential,” said the eight-year-old from Everett, ON.
He started connecting with AboutFace last winter, and this summer participated in every week of the virtual summer camp called Camp Trailblazers, where he met many other kids from all over Canada with facial differences.
His mom, Patricia Williams, said it was a revelation to meet so many others with facial differences.
“I think you mean revolution,” said Alec, correcting his mom’s word choice.
The Grade 3 student could very well be revolutionary.
“It was really nice to see other people with differences, but I don’t believe in differences,” he said. “I believe it’s only the inside that matters, not the outside.”
From the inside, Alec’s dreams and goals pour out. He loves dinosaurs, Scooby-Doo movies, and Harry Potter (the books and the films).
The fictional world created around child wizards by JK Rowling, might be the best way to describe Alec.
Were he one of the characters in the book who undergoes the house sorting on his first day of school, the old sorting hat might have some trouble. Alec could fit in any of the four houses of Hogwarts.
If he could choose his own house, it would be Gryffindor. Its members are the brave ones who always save the day, but get in trouble along the way.
He would find a place among the bold, outgoing Gryffindors, who value friendship and any opportunity for laughter.
He is, undoubtedly, a brave child who faces regular questions about his missing ear.
“Once every two months, at least, someone is mean,” he said. “Little kids in Kindergarten have a lot of imagination about what might have happened … one asked if my mom cut off my ear.”
He tells them, simply, he was born that way. Sometimes, if it’s the “50th time” he gets asked that day, he’ll shrug and walk away.
He’ll return to his closest friends – the “three brothers,” who share no blood relation, but are “first place in the friendship list.”
Alec is intelligent and curious like a Ravenclaw. His life in and out of Sick Kids hospital for procedures taught him many things about medical procedures. He craves knowledge about things like dinosaurs, Egyptology, and Greek mythology.
“I love dinosaurs … I just like learning about the facts and how they might have looked,” he said. “I still get a bit sad sometimes that dinosaurs are extinct.”
In house Slytherin, among the most resourceful students, Alec would fit in for his ambition and his leadership.
At eight years old he has set his sights on a career as a film director. He writes, acts, and directs his own Scooby-Doo films. One day, he’d like to deliver his school announcements, and make a film called Scooby-Doo and the Egyptian Curse of the Dino Mummy.
"I know, it's crazy!" he said, admitting that might be too many things for just one movie.
As a member of Hufflepuff house, Alec’ kindness and dedication would shine through. He has faced meanness, he has known the loyalty of others, and both have made him a good friend.
“It makes you kinder to people,” said Alec. “Sometimes it can actually make people sad to have a question asked if it’s too personal. It might be good to have a friend who has gone through a lot of stuff like you have … If I didn’t have a facial difference, I would not be feeling this way today.”
AboutFace’s executive director, Danielle Griffin, said a lack of public acceptance of facial differences still prevails.
“Year after year in our surveys, community members report their experiences of stares, exclusion, bullying and barriers to opportunities,” said Griffin in a news release from AboutFace. “The misconceptions and stereotypes about people with a facial difference are persistence.”
Last year, Jillian Barnes, a nurse at Collingwood General and Marine Hospital, also participated in an AboutFace campaign video. She shared her experience of a lifetime of strangers staring, asking deeply personal questions, and assuming she had an intellectual disability because of her facial difference.
Like Alec, she is intelligent, observant, and ambitious. And she too encourages others to see beyond people’s faces to the person they are on the inside.
AboutFace reports there are more than two million Canadians living with facial differences, which includes anyone whose appearance, from the neck and above, has been affected by a congenital, acquired, or episodic condition or syndrome.
Alec said it was easy to say yes to an appearance in the AboutFace Beyond my Face video and campaign. Not only would it “look good on his resume,” it would remind people “we’re all the same on the inside.”
“It doesn’t matter about the outside, only the inside matters,” he said.
You can watch the Beyond My Face video featuring Alec and five other children with facial differences online here.