Boy: You don’t have to be my friend.
Boy: What’s the deal with your face?
Boy: Shut up.
Boy: YOU shut up!
Girl: Why don’t we ALL shut up?!
Girl: You’re the toughest kid in that school. Show them!
Boy: You’re the best, dude!
Women: Whew...I’ve got to be cool.
Girl: You don’t like my costume?
Boy: You look like a zombie princess.
MELISSA: The film, “Wonder,” with Jacob Tremblay, Owen Wilson and Julia Roberts, follows Auggie, a young boy with Treacher Collins Syndrome (TCS), a rare condition that affects the development of bones and facial tissues. It occurs in 1 in 50,000 births. Jacob Tremblay, who plays Auggie in the film, does not have Treacher Collins Syndrome (TCS) in real life. We reached out to Asusena Vanzandt, a Deaf woman who has TCS to get her perspective on the film. First, she shares what TCS is.
ASUSENA: It’s an unusual facial syndrome, it has undeveloped muscles, tissue, bones, for instance, no cheeks, no chin, no ears, and so forth.
MELISSA: How do you personally feel when seeing a normal actor being made up to have the syndrome for the movie “Wonder”?
ASUSENA: When I first saw the short clip, admittedly, I was excited because the movie was about TCS, and is educating everyone what our community is about, and what we struggle with on a daily basis in our lives. Secondly, I felt uneasy because that actor was wearing stage makeup. I felt like this was unnecessary because they had the ability to hire and search for other children who had TCS. There are millions of us out there. Why not give them a chance to really experience being an actor? And how often do we get a chance to be in a film? I just really hope that this film has a positive message and educates everyone to be kind to others and not judge someone by their appearances.
MELISSA: Why is it important to have authentic representation among disability in Hollywood?
ASUSENA: I just hope it sends a positive message. I hope people learn from this film. I hope people are more educated about our community, what we struggle with through everyday life. Because life is not easy. Remember, people, be kind. Much love.
MELISSA: Thank you for sharing with us. Do you think they should’ve went with an actor with Treacher Collins Syndrome? Share your thoughts.