POV: In your own words, what would you say Sun Kissed is about? How would you describe your film?
Maya Stark: Sun Kissed is about a Navajo couple, Dorey and Yolanda. who have two kids who have a rare genetic disorder called XP. XP basically means that you can't be exposed to any sunlight or any UV light. Even though it's such a rare disease that their kids have, they learned that there are actually more kids on the reservation who have the same disorder. They go on a journey to find out why. And ultimately they unravel a link between XP and America's colonialist past.
POV: Tell us a little bit about XP and how it manifests itself.
Adi Lavy: It's a genetic disorder which prevents you from being exposed to daylight — also halogen light and fluorescent lighting. If you do get exposed, you very, very quickly you get second or third degree burns, within about ten minutes. And so the more burns you get the more likely you're going to get skin cancer. So a lot of these children at a very young age go through a lot of surgeries to remove growths from mainly their faces. And when they do go out, they have to wear protective gear. There are seven variants of XP, and the Nez children have the harshest one, which is neurodegenerative. Basically that means they're sensitive to light more than the other XP variants. Plus with the years, they degenerate neurologically.
POV: How did two filmmakers from Israel end up on the res? How did you meet the Nez family and how did you get interested in this subject?
Lavy: Well I met the Nez family at Camp Sundown. It's a camp in upstate New York. It's a summer camp for children who have XP and their families. Children with XP are already secluded because it's so hard for them to go outdoors. So, usually they go during the night. They live such a different lifestyle. And for a long time, I was trying to photograph them, and it was really hard. There are so many layers to this story and so many different story paths. It was just impossible. But they stayed with me, their story was so strong.
Stark: When Adi came back from Camp Sundown, she told me about Dorey and Yolanda. She told me that she met this amazing couple who has this amazing story. But really what caught my attention was the fact that they told her that they thought it relates to their tribal history. That's when we both realized that this could be part of a much larger historical narrative with the potential of exposing the lasting effects of colonialism on their tribe.
POV: What is it that they discover in terms of the links between American history and Native American history and this genetic disorder?
Stark: They discovered that the reason their kids have a recessive genetic disorder is because of a genetic bottleneck that happened during the time of the Long Walk. They didn't really know much about the Long Walk. They realized that somehow genetically they were part of this legacy, but they were not really sure how. It was a parallel process of learning about what happened during the Long Walk and also learning how genetically the Long Walk manifested XP into much larger numbers than in the general population.
POV: And was this something that they uncovered or that scientists knew about already?
Stark: Geneticists did find out that there are other genetic disorders on the Navajo reservation that have a high occurrence because of the genetic bottleneck. They were figuring out how XP was related to that and if it was part of that. There was a research out there done on other genetic diseases, but not specifically on XP.
Lavy: XP is so rare that, during our research, a lot of the doctors we spoke to on the reservation had no idea that there were so many cases. They just didn't know. They were shocked to hear it.
POV: When they go into their community and into the older generations of Navajo, who have a closer connection to the Long Walk, they're met with silence. Talk about why there's sort of a taboo against talking about the Long Walk and this negative experience in Navajo history.
Stark: In my experience, it has to do with the dead. You don't want to talk about the dead because in a way you're wishing it back on you. Something bad is going to happen to you. It's really important for me to say that as outsiders and filmmakers, we came into this community, and in no way we're trying to talk about something that the Navajo Nation doesn't want to bring up. But this was Yolanda and Dorey's journey, and it was their discovery. They were trying to learn about their history and at the same time they were trying to find a relationship to that history in a way that redefines who they are as modern day Navajos.
Lavy: There's also a sense that maybe the community is a little post-traumatic and a lot of times when we really wanted to the traditional side of the Navajos, it was very hard to reach medicine men. Leanndra had a medicine man. It's not in the film because we never got to shoot it. They just wouldn't agree to it. So we did have amazing access to the Navajo community, and Dorey and Yolanda and their families invited us into their lives, but there were aspects that we weren't allowed to approach.
POV: You address it in the film — the struggle that Yolanda and Dorey go through in terms of balancing a more traditional interpretation of what has happened to them and embracing a more scientific, I guess "modern" approach. Can you talk a little bit about that struggle?
Stark: Dorey explained it in the most beautiful way. It's not in the film, unfortunately, but Dorey called himself the juggler. He said that he has three balls. One is Christianity, one is tradition, and one is western medicine. And he has to constantly juggle to figure out what's going to work best for his kids at a certain point in time. I think that to me that was very revealing because they would try anything. They would take their kids to Western doctors. But they would also try to help them with Navajo traditional healing ways. It really is very different from one person to another. Yolanda was more accepting of the traditional healing ways and Dorey was more, not that he wasn't accepting, but he was keeping his guard and he didn't believe that that could help his kids as much as Western medicine, because of the tangibility of it. In the movie, you can see Dorey telling us about the ants and how he creates war again, sort of his way of saying that he doesn't believe in that. But I think it actually goes much deeper with Dorey. He's constantly trying to define and redefine who he is by how he's helping his kids
POV: There's another scene towards the end of the film after Leanndra dies, where Dorey is in his kitchen and it is this incredible, emotional, sort of cathartic release. Can you talk a little bit about that scene and why you chose to include it.
Stark: That scene starts with Dorey at home drinking beer, American beer, and completely, completely crushed, really trying to get himself together and understand why is this happening to him. It starts with this very heartfelt sarcasm of: this is American beer. This is American this. He's pointing out his anger towards what he had just felt and his understanding of his journey. In the beginning, we thought this is where Dorey's journey ends. But well into the editing we realized that this is where everything ends. This is the combination of everything.
POV: You clearly have a very close and intimate relationship with the Nez family. Did you feel like there were times when you had to distance yourself from the emotions that are running through their experience? How do you function as a filmmaker documenting something like that?
Lavy: Well, during the filming of this specific scene, it was so intense that I kept thinking we need to stop shooting. But, Dorey kept telling us to keep shooting. He's the one who told us keep shooting and he wanted this on camera. I do think in general you get so close and so intimate with your subjects that you have to take a distance sometimes. It actually did work for us, because they're in New Mexico and we're in New York. We would fly every one month or two, sometimes every three, four months — whenever we could we flew out there. But we had the few months to look over the footage, think about what happened, kind of see where it fit in the film and ask where are we going from here. But we got really, really close to them and at some points it kind of became more than filmmaker and subject. It was more intense and they kept saying "you're our family" or...how did Dorey say? Sister from another mother?
POV: This film, as you mentioned, is very complex. There are so many different angles, so many different layers to it. This is also a really personal and intimate look into this family. I'm interested in knowing what did it take to convince them or did they know what they were getting into when you started filming them?
Stark: So we have been joking about that with them in the last couple of years. After Adi came back to New York from Camp Sundown, and we decided that we wanted to approach them, we wrote them an email and we asked, "can we come visit you with a camera?" Little did they know that four years later their lives are just like completely exposed. Now with all seriousness, Dorey and Yolanda have been so amazing with us, and so incredibly generous to let us into their lives and their family's lives. They have gone through such hard, unimaginable hardship with first their son dying and then two years into the filming, Leanndra passed away. And really what was so important for us, because we felt so humbled by being part of that process, was to create this environment where anything is okay. You can say anything, you can do anything. You can be whoever you want to be and that would be fine. There is no judgment, there's no criticism. And I think that really allowed them and later us, to create this very close, very intimate relationship with them that made this film what it is.
POV: Now you mentioned that Leanndra died two years into the film. And the cameras are there while that's happening. With this kind of access also comes responsibility. What are your thoughts about what is your responsibility A, to your subjects and B, to your viewers?
Stark: It's been such a struggle for us, especially in the editing because when you're shooting, you can shoot anything. We ended up 350 hours worth of footage, and then you walk into the edit room and now you have to make sense of that and make sure that you tell the most accurate story with the most respect to Yolanda and Dorey. And this is our responsibility to our audiences I think as well — to tell the most accurate story. Something I think we've tried to do in the film is not really have any answers, but bring questions, hopefully to get people to start thinking about these issues and start you know discussions around it. This is also something that I think we feel responsible for — not to hit somebody in the head and say, this is what you did, this is how you should feel about it. This is the life on the Navajo reservation right now. This is Dorey and Yolanda and their kids. It's your job to figure out what you think of it and how you feel about it.
POV: Can you talk a little bit about the stylistic and aesthetic choices that you made when shooting the film and editing the film? What were your goals?
Stark: Our main goal was to really represent in the shooting and the editing of Navajo life, the Navajo lifestyle which is much slower in pace, much less hectic, much more accepting of what comes, very attuned to nature and their surrounding, and very much in dialogue with nature. I think that also in the editing later on then, it was like a guideline for us to let a shot run longer and only cut when we really feel like we need to cut and if there is a little bit of unfocus or you see the cameraman just trying to find the focus or moving a little bit, that's fine.
Lavy: It was a stark difference between the inside, where the children and Dorey were, to the outside which is the middle of the desert in New Mexico — it's hot, the sun is scorching. All the windows are blocked with UV protection and blankets, and so we tried to play off of how dark it is indoors and actuality of living with XP and the light outdoors.
POV: Where are Dorey and Yolanda now? Can you give me some updates?
Stark: They've lost two children and they're still trying to figure out what the next steps are. Yolanda is still an advocate. She wants to become a genetic counselor. She is very much an advocate of genetic testing on the reservation and I think Dorey, because he had stayed at home for so long and kind of shunned himself from the world for so long just to take care of his children, I think for him it's a little bit harder to figure out what he wants to do. His purpose as a main caretaker is done. So I think he's still trying to figure that out.
One of the things that we really hope to do with this film is to create awareness about the disease on the reservation. It's been something that has been so important to Dorey and Yolanda, as they were finding more and more families, we heard more and more stories of families who were being persecuted by social services and blamed of burning their children. It is such a horrible experience to know your child is sick, and you don't know what to do. You take them to a doctor and then they're blaming you for hurting them. It is one of the major reasons why they agreed to participate in the film — firstly, to create awareness and to make this disease recognized on the Navajo Nation and secondly, to say that it is okay to talk about, there is a community of families here, you can get information. You can contact Yolanda, you can contact your doctor, you can tell them about this disease. There's different ways of coming out with it and I think that that's a big part of what they were trying to do. I think that this would be great if it actually happens.