Crystal was 18 when bone cancer changed her face. On top of chemotherapy and operations, she had to deal with other painful realities too.
She told Sky News: “Pre-cancer, and everything that happened I wasn’t aware how people who had facial differences were villainised or victimised.
“Experiencing that, seeing the trauma, I’ve been so affected by people staring at me in the street, and hate comments about my appearance.”
She believes part of the problem is the screen portrayal of visibly different characters: “There’s a narrative in Hollywood, especially that’s been going on for years, that people are not addressing and seeing that these are real people.”
Refusing to let her differences keep her from pursuing her dreams, Crystal studied acting at LAMDA, one of the UK’s top drama schools.
Now a professional actress, she knows her appearance will always be judged.
“[My visible difference] is on my face. I can’t really hide anything. Every time I talk or enter a room, it’s not like anyone’s fault, I just know that people have that first perception or viewpoint of me.”
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With aspirations to one day appear in a Marvel movie, she hopes her drive to perform will help others in the future.
“I didn’t have anyone who looked like me as a role model… It would have just been so much better if I’d had that one person to look up to, to be inspired by.”
Lack of representation is not the only problem. When visible difference does make it onto the screen, misrepresentations and negative overtones often reinforce stigma.
Nearly one in five people in the UK self-identifying as having a visible difference, such as a mark, scar or condition, according to charity Changing Faces.
New research they conducted into the way disfigurement is portrayed on screen found that people with visible differences were over twice as likely to be shown as a victim or a villain than as a love interest.
Film and television have used scars, burns and birthmarks as a shorthand for villainy across the genres for years. From Bond to Batman and Star Wars, to more family-friendly productions such as The Lion King.
And while visibly different characters aren’t common on screen, a woman with a physical difference in film or TV is even rarer.
Author and entertainment journalist Kristen Lopez says it’s because women’s value on screen is so tied up with their sexuality.
The author of Popcorn Disabilities: The Highs and Lows of Disabled Representation in the Movies has even come up with a term to describe the industry’s attempt to keep their leading ladies “sexy and beautiful”.
“You often see what I call ‘pretty disabilities’. It’s a disability that is not going to affect the physical perfection of the actress. And it will also allow for an A-list, usually non-disabled actress, to continue to play the character.”
Lopez says for that reason, films are more comfortable with portraying blind or visually impaired women, deaf women, or non-verbal women, because their disability “doesn’t mar the face”.
Speaking from her own experience of growing up with brittle bone disease, she says: “I worry about the next generation of disabled girls – what are they seeing? Do they feel represented?
“How do you navigate adolescence if you don’t see anybody that looks like you doing the things that every other young person is doing?”
Romeo Olukotun was just one year old when an accident left him with second and third-degree burns on his torso, chest and neck.
With his accident not spoken about at home, he admits, “I just kind of had to deal with that on my own”.
He did find some flashes of inspiration, including from singer Seal.
“I loved how even though he had a visible difference and scarring on his face, he wasn’t looked down because of that. He was seen for his talent.”
With his confidence taking a hit due to his scars while at secondary school and university, he rebuilt his self-esteem as an adult through cheerleading.
Later spotted at a music video shoot he’d gone along to with a friend, he’s now an actor and model. But his visible differences have, at times, affected his casting.
Romeo told Sky News: “Because my scar on my neck looks like I’ve been stabbed, I would often be asked to ‘Try this [performance] like a thug or someone who’s on the streets’. And I didn’t like being labelled as that. I’m someone who is much more than my scars.”
He’s now a man on a mission: “I want to be someone who shows other people with a visible difference that they can be anything. They can play the romantic lead, they can play a villain if they want to. They can be a hero, not just be labelled as someone sinister and evil, Machiavellian.”
While the film and TV industries might be slow to change, LAMDA vice principal Dr Philippa Strandberg-Long is hopeful for the future.
“We have to make our students aware of the industry that they are going into and not, I guess, create a utopia where they’re not aware of the industry they’re going into. However, we can change it from how we educate our students that come out.
“Things won’t change overnight, but it will change over time. So, we have to put in the work at the grassroots, which is here.”
Changing Faces is the UK’s leading charity for anyone with a visible difference. They have a confidential support and information line for anyone dealing with the impact of visible difference.
