COLLINGWOOD - It takes courage to face some days, and more than courage every day when people don’t see past your face.
Jillian Barnes lives her life with what's termed a 'facial difference.' People stare, they make comments, they cringe, and they offer unsolicited and unscientific advice.
“We place so much value on appearance,” she said in a video called Beyond My Face, published by a Canadian charity offering support to those with facial differences. “It’s very hard to believe someone is going to give me a chance.”
But she hopes to help change that through understanding, and with courage.
She is part of a group of people encouraging others to look beyond their faces and give them a chance.
Barnes was born with Sturge-Weber Syndrome, which, for her, is a combination of a port wine stain (birthmark) covering much of her face and glaucoma in both eyes.
It is superficial, except for some loss of vision from the glaucoma.
It is not contagious, as people have worried aloud. It is not something that can clear up “with a cream” as others have offered. And it is not the result of a violent accident, as total strangers have asked in a grocery store.
Sometimes, people have associated neurological problems such as seizures, but Barnes’ brain is unaffected, despite the assumptions people have made.
“In high school and grade school you’re always kind of put in the b-group,” she said. “Maybe I was a b-group student, but maybe it’s also because when people say you’re not that bright, you start to believe it.”
At restaurants, people have asked her dining companions what she would like to eat for dinner, as if she didn’t have the mental capacity to order her own food.
“A lot of people see me in the community and they make assumptions: ‘You look different, therefore you’re developmentally delayed or you’re mentally handicapped,’” said Barnes.
She has a masters degree in nursing.
She was prepared to pursue a PhD, and had several phone calls and email exchanges with a mentor professor as she prepared her essays and paperwork. However, at the first and only in-person meeting, the professor told Barnes she couldn’t work with her.
Barnes said the professor was extremely uncomfortable, and wouldn’t shake her hand. She gave a list of reasons for not mentoring Barnes, none of which had come up as issues before.
“That was such a heartbreaking loss,” said Barnes.
Though she can’t be sure her facial difference was the reason she lost her PhD mentor, she imagines the greatest obstacle was her appearance. Likewise, she expects it's the reason she doesn’t get a position or a job she knows she’s a strong candidate for.
“I could be wrong, but it’s always the reason I attribute it to,” said Barnes. “There’s definitely been people I’ve encountered in my life that just can’t get over it. They just can’t see past it.”
When the high school kids, her friends in grade school, closed the circle, or ran the other way when she walked down the hall, she figured it was because of her birthmark.
She said it’s hard to make friends, which is an isolating, sometimes lonely feeling. But it’s not all bad.
“I have had a great life and I have a wonderful family, as well as a small group of fantastic friends,” she said.
She’s been a nurse at Collingwood General and Marine Hospital since 2007 where she works on the surgical floor.
At work, she’ll take time when introducing herself to a new patient to focus on a task like checking blood pressure while allowing the patient to stare a little as she pretends not to notice.
“I know it’s awkward and it’s different for people,” she said. “For the most part, patients are really good about it and don’t seem to have an issue … I can hear people talk about it when I’m outside the room … which is awkward. If they don’t ask, I don’t want to discuss it.”
But, sometimes people do ask.
She’ll get questions like “what happened to you?” coming from disgusted expressions.
“I think it would be nice if people … treat people with respect and give them a chance. Don’t make assumptions about people and don’t jump to conclusions,” she said. “Treat me how you would want to be treated if you were in my shoes.”
In Barnes’ life, the way people treat her has, in part, formed her character. She’s quiet and introverted.
“It’s certainly shaped my personality,” she said. “It just makes everything challenging in its own way. If I’m going to the grocery store, I think, ‘Okay, what am I going to encounter?’”
A line up of children at the YMCA puts a little panic into her chest as she worries what the kids, famously filterless beings, will say or do. Will they make a scene?
But having people vocalize or imply things about her because of her looks has also helped her build resilience and inner strength.
“While living with a facial difference creates challenges, it has not stopped me from living my life,” she said. “It‘s something I live with and I’m okay with it, so it would be nice if other people were okay with it too.”
She started her post-secondary school career with a culinary management diploma.
“I didn’t think I was smart enough to go to university,” she said. “It was only after I graduated culinary school that I realized I was actually pretty intelligent.”
She did well in her university nursing program and earned her master's degree. She also taught nursing at Georgian College for a time.
“I thought I wasn’t bright at all, and then I realized, I can do this,” she said. “People need to grow up and learn their strengths and believe they can accomplish things they may think are not possible.”
AboutFace, the organization behind the video, 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.
Barnes’ advice to children and youth with facial differences is to stand up for themselves and to know their strengths and abilities.
“Don’t let people treat you like you are mentally handicapped because of it,” she said. “There’s always this assumption that you are, and then you believe it.”
And to those who encounter people with facial differences, she urges respect.
“Whether it’s me, or somebody in a wheelchair, or somebody with any kind of difference, you just have to treat them with the respect they are entitled to,” she said.
Her life, while maybe not what she expected as a child, has brought opportunities with the challenges.
“I have had many amazing experiences in my lifetime and I look forward to many more,” said Barnes.
The Beyond My Face video is available online here.
Barnes is one of seven Canadians featured in the video, which is aimed at bringing awareness and understanding to the public about facial differences and the stigma, and even cruelty, those living with them face.
AboutFace is the only Canadian charity providing help to people of all ages with any type of facial difference. They offer support to families through camps, retreats, education, support groups, and public awareness.