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Visible Difference & Disfigurement in the Arts

In the wake of the 2023 awards season which was almost entirely devoid of positive, accurate, authentic representation of people with disfigurements and visible differences, we’re calling upon the entertainment industry to prevent further marginalization of the visible and facial difference community.

An open letter

Face Equality International, together with a team of experts, has put together a Position Paper and Open Letter to challenge the absence or misrepresentation of the visible and facial difference community in film, TV and the arts. 

  • Disfigurement has historically been used as a character device, often through use of prosthetics to indicate immorality or vulnerability. 
  • There are four damaging tropes that dominate the entertainment industry. People who look different are largely portrayed as victims, villains, vigilantes or outcasts, causing real-life harm to this neglected community. From discrimination in the workplace to bullying in schools, these stereotypes lead to real-life abuse of people with disfigurements. 
  • Using the American Film Institute’s list of 100 Greatest Heroes and Villains, researchers at the University of Texas found that 60% of the all-time top 10 American film villains have skin conditions including alopecia, facial scars, verruca vulgaris, and bulbous noses. In contrast, 0% of the top 10 heroes have similar conditions. 
  • In 2021, Changing Faces research conducted by Savanta ComRes found that three quarters of respondents (74%) thought popular culture was changing to be more inclusive, but that people with visible differences were being left behind. The same survey also reported the long-term impact of the lack of representation on people with visible differences, with a third having low levels of confidence and 2 in 10 having low self-esteem. 
View the Open Letter & Download the Position Paper
“Media representation can truly shape societal attitudes for the better; when harnessed correctly. The facial difference community deserve to have their true, multi-faceted, real-life stories told. This is a critical issue for Face Equality International, and so we will do all we can to turn the tide on the disproportionately negative representation of facial difference; something we currently see all too often.”

Phyllida Swift, CEO of Face Equality International


Written by: Niki Averton

In this comprehensive guide, you'll receive ten tips to help avoid the common mistakes often made when writing to craft a compelling character with scars.

International Media Standard on disfigurement

Developed by: Face Equality International

The International Media Standard supports responsible media organizations and professionals to show respect and care for individuals who live with a facial difference or disfigurement.

“Today, the world’s great storytellers aren’t always telling the story of the survivors I have had the pleasure to know. ... Survivors, as we know them, have great strength, compassion, and a sense of community that the world needs to have more insight into. They need a bigger platform to show the great things they are doing and see them for the people they are — not the villains sometimes portrayed in film, literature, or television.”

Amy Acton, CEO of Phoenix Society for Burn Survivors


Written by: Michelle Lauren Anderson

She stared at me and stated, “You look like you are from a horror movie.”

It was the first day of burn camp for young burn survivors. She was a burn survivor camper. I was a burn survivor counselor. She had scars, just like me, but seeing the scars on someone else was still scary and suspicious.

Until this point, the only identification of scars this young survivor had was what she had seen in the media. She genuinely believed that scars made you a villain, a monster, or evil.

The Phantom, Darth Vader, and Me

Written by: Dr. Lise Deguire

I was 20 when Return of the Jedi came out. Not a big Star Wars fan, I still went along with my friends, who were clamoring to go. Darth Vader scared me with his creepy labored breathing and his impassive black mask. As the film reached its climax, Luke Skywalker removed Darth Vader’s mask. The theater audience gasped in horror as Darth Vader was revealed as… a burn victim.

“The media representation of disability centers a concern for the presence of disabled characters in mainstream entertainment narratives. Media participation demands particular attention to the lack of opportunities for disabled people to ultimately acquire equal access to resources needed to produce media independent of, and particularly within, the mainstream media industry. Such access can directly influence our capacity to overcome stigmatization and acquire the cultural, social, and material capital needed to become fully liberated.”

Extract from Redefining Disability, Jaz Gray, Professor and FD Activist

Sign the face equality pledge to show your support.

You can join the movement by signing the face equality pledge here. Have questions or want to get more involved? Contact Face Equality International.