In teen romantic comedy Midnight Sun, Bella Thorne plays Katie, a recent high school grad who’s been pining for a handsome young man (Patrick Schwarzenegger) who doesn’t even know she exists. They’ve yet to cross paths because Katie lives with a one-in-a-million genetic disorder called xeroderma pigmentosum (XP for short), which prevents her from ever coming into contact with direct sunlight. Her father (Rob Riggle) has devoted his lift to keeping her safe, but when she finally draws the attention of her crush, she decides to risk her health to live her life on her own terms.
In a roundtable interview, Thorne, Schwarzenegger, and director Scott Speer spoke to PopMatters about the significance of representing those living with XP on the big screen, getting comfortable with the idea of death, and how the movie has helped bring awareness to the XP community.
Bella Thorne in Midnight Sun (Photo by Ed Araquel) (IMDB)
Scott: From the beginning, we talked about how this wasn’t going to be a movie about a sickness or a sick girl. When you talk to the people who have XP, they’re so normal. It’s like Katie says in the movie, they don’t want to be a disease. They want to live their lives. They’re awkward around boys… they’re everything all of us are. Nobody wants to be defined by the hand they were dealt. You don’t have any control over that. What you can control is what you’re going to do about it.
It’s an idea that’s emphasized a lot throughout the movie. Has that idea resonated with some of the people you spoken to who have seen the movie?
Bella: Once you have a “thing” about you, everyone treats you so differently, like you’re this battered fruit. You’re bruised. I think that’s a big part of my character, is feeling just like that. Almost everyone does. I feel like that’s why people keep so many secrets and skeletons in the closet, because you’re so afraid people will look at you so differently and treat you like whatever thing you’re hiding. We made it very clear from our first meeting (for the film) that we would make that one of the points of the movie. It’s important, especially for everyone with XP. You don’t want them to watch this movie and think, “I feel like everyone in the audience is looking at me now.”
Scott: Yeah, like, “I’m even more of a freak now than when we started.” Everyone has their [own set of challenges].
How did you research the disease?
Scott: Meeting people [with XP] in real life is difficult for obvious reasons…
Patrick: But this week [people with XP] are coming to the premiere. A bunch of people who have the disease reached out to us. A girl messaged us, saying, “thanks for making the movie, it’s brought awareness to the subject.” And we just got a tweet from the biggest XP non-profit organization an hour ago, saying that in the last 24 hours, they got over 100,000 site views. We could’ve never thought this would happen. It’s a one in a million disease — I’m sure you didn’t know about it going into the movie, because we didn’t. The fact that they’re getting all of this awareness means we were successful.
What drew you to your role, Bella?
Bella: I love the relationship between Katie and her father, Jack [played by Rob Riggle]. I’ve always wanted a relationship like that. I grew up with a single mom, so I completely feel where these two characters are coming from and how much pressure [the disease] puts on their relationship. Jack has pretty much given up his whole life to keep Katie safe. I met Scott and… you never know. You could have a great script but not a great director, or a great director and not a great editor. I think you get fucked that way. But I met Scott and he was so lovely and we agreed on so many of the key points in the movie. You could look at the script and say, this is clearly a movie about a sick girl. But we really didn’t want to do that.
Underrepresentation for minorities has been a major topic in Hollywood as of late, and in this movie, you’re representing the extreme minority of those living with XP. And I think it’s key to not make whatever puts a character into a minority group–whether it be a disease, a disability, or the color of their skin — their defining characteristic in your story.
Scott: Yeah. This is a movie about a girl who happens to have a sickness. I think the purpose of movies is to bring us together and to remind us that we are so much more alike than we are different. In that way, it wouldn’t serve anyone in the XP community to make a movie in which Katie is this sad, strange girl. I had questions from the make-up department, “Should we make her skin chalky white? Should we make her look weird?” And it’s like, no, she’s a teenage girl. Make her look like a teenage girl.
You’ve said this film is like a fairy tale.
Scott: One hundred percent. This [story] is for anyone who’s felt trapped in a tower and has to watch life go by. Everyone has felt that way in some form or another at some point in their lives.
Katie has a grasp on the concept of mortality and death in a way a lot of us don’t. What was it like getting in that mindset? Was that something you could wrap your head around?
Bella: Absolutely. Ever since I was little, I’ve barely had any family that was still alive. A lot of my family has passed away. I was raised around death. I watch a lot of horror films. What I have wondered is, why. Why me? Why this situation? But then I think, stop being so selfish. Why not you?
I like that about Katie. She’s so wide-eyed and genuine and maleable. And yet she has this older presence about her because she’s raised with the idea of death. Every day could be her last. It’s a question of when, not if. I think about that every day. I’ve had so many things happen to me. One day, you have something, the next, it’s taken away. You’re never going to be so happy unless you’re living your life. It’s quality over quantity.