Kelsey © Courtesy of AboutFace
When you look at me, what do you see? This is a question that resonates deeply within the facial difference community.
Despite including relatively common conditions such as cleft lip and palate and Bell’s palsy, facial differences remain widely misunderstood. People with facial differences continue to regularly encounter barriers and misconceptions in a world that is still learning to see beyond the surface.
Understanding Facial Differences
Facial differences can be congenital (conditions or syndromes from birth); episodic (coming and going, such as acne or other skin conditions); or acquired (including from accidents, burns or illness).
While the language has thankfully moved away from terms such as “deformity” or “disfigurement,” a shift in language is just one part of the larger issue. People with facial differences remain underrepresented and often excluded from workplace and human rights protections.
But the movement for change is gaining steam. AboutFace, a national charity, works with a network of volunteers across the country to build inclusive spaces and promote greater equity for the facial difference community.
Kelsey’s Story: Amplifying Important Voices
Kelsey, Communications Officer at AboutFace, was born with Moebius syndrome, a condition causing facial paralysis, among other complications. She has a lifetime of experience with the reactions of others. “People whisper, stare, or ask intrusive questions like, ‘what’s wrong with your face?’” she shared.
Despite Kelsey’s master’s degree, misconceptions about her abilities are a recurring theme. Growing up, her teachers often didn’t know the best way to support her and would assume she had a cognitive disability. Even if perfect on paper for a job, interviewers often can’t hide their surprise when she walks into the room.
Navigating a world filled with roadblocks has shaped Kelsey’s passion for advocacy. She went into communications because “I feel like the stories of people with differences aren’t told enough. Social media is a powerful platform to introduce voices from this lesser-known community,” she said.
Alec’s Story: The Power of Community
At 12 years old, Alec is already making a big impact as a member of AboutFace’s Youth Advisory Committee. Alec has Goldenhar syndrome, a congenital condition characterized by abnormal development of the eye, ear and spine.
Alec attends Camp Trailblazers, which operates in several provinces thanks to camp partnerships and the AboutFace Training & Camp Bursary Fund.
Connecting with kids who have varying conditions but who share the unique challenges—both medical and emotional—of growing up with a facial difference has been a game-changer for Alec.
“It was a revelation to meet so many others with facial differences,” said Alec’s mother.
Alec quickly corrected her: “I think you mean revolution.” And perhaps he’s right.
A Path to Breaking the Stigma: Education and Advocacy
Recognizing that education is key, AboutFace has an ever-expanding library of resources and educational programs for the facial difference community and their families, as well as for organizations and the broader public.
“Support for the facial difference community goes beyond telling people to just ‘be kind,’” said Kelsey. “It’s about implementing tangible policies and procedures to protect rights and ensure equal access to opportunities. And it’s about education, because education leads to understanding and acceptance.”
Learn more and get involved at aboutface.ca
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AboutFace’s vision is the elimination of the stigma and discrimination encountered by individuals with a facial difference.