Filmmaker Drew Xanthopoulos talks about the human drama behind The Sensitives 

In The Sensitives, filmmaker Drew Xanthopoulos tells a fascinating cinema verite story about people with such severe chemical and electrical sensitivities that they are forced to live apart from society. There's Joe, who spends his time in an insulated, sanitized room that looks like the inside of a spaceship, and his wife, Lanie, who has become his full-time caregiver. There's Susie, a woman living in Snowflake, Arizona, who's become an advocate and social worker for a community of "sensitives." And there's Karen and her sons Sam and Nathan Akers, who have all been living inside a quarantined house for 20 years. The twins write songs and play guitar while lying in bed. On the rare occasion they leave the house, they wear high-quality face masks.

Xanthopoulos, a Dillon, Montana, native who got his film degree from University of Texas-Austin, spent three years embedded with his subjects. In advance of the film's Missoula screening, we talked with him about the experience.

How embedded were you?

DX: Completely. I lived with them. Joe was super sensitive to everything so I stayed in an airbnb in Kansas when I was filming with them that was fragrance-free. I had a separate set of work clothes, too, that I prepared a special way when I worked with them. With Susie, I stayed in her house. She had a little cot she put out for me and she started calling it "Drew's Wing," so at night I would sleep in a sleeping bag in a cot in her extra computer room. With the Akers I camped on their property because nobody had entered their house for years. I shot through their windows. Every moment of them, aside from [a few brief moments when they left the house], is filmed through a threshold of some kind of window or a screen.

The Akerses were the most fascinating to me, partly because of how isolated they are, but also because of how musical the twins are. They felt very ethereal to me, not of this world.

DX: Right. And they literally aren't of this world—they haven't lived in this world since they were boys. It's been 20 years I think since they had been chronically fatigued, in bed all the time. They'd been sensitive their whole lives, but it accelerated after they hit puberty, is my impression. They've lived in the same house and room for most of their lives, completely isolated. They have pen pals—there's one scene where you see them get mail from somebody who sends them a birthday card. They listen to the radio—they're not as electrically sensitive as Joe is. They get TV, so they watch Austin City Limits and they love it. They know more about modern music than I do. They would give me lists of musicians to look up. They have great taste.

What was it like to film them from outside?

DX: My first day there when I was filming with them it was super tricky. I felt like a voyeur—it was awkward. I wanted to candidly film their cycles of the day, and they wake up kind of late, so they would leave their curtains open for me to film through their windows. So imagine looking at your neighbor's house and seeing this kind of creep wandering around filming through the windows. I was that guy.

When did you decide to use the twins' music for the soundtrack?

DX: On day one I noticed there was a guitar in the background, and so I asked them, "Do you guys play that?" And they're like, "Oh yeah." And I asked them if they play covers and they said, "No, we write our own music." It was the most incredible thing to me. This is why I chose everybody who was in the film: They all had an aspect of their humanity that they'd held onto—a recognizable self—and the twins' was beautifully expressed in their music. And in the film, Sam says it so well. He says, "What's more interesting, the cage or the prisoner?" And I think that question embodies what I tried to do with the film.

click to enlarge The Sensitives documents the lives of several people with chemical and electrical sensitivies, including Sam and Nathan Akers, above.
  • The Sensitives documents the lives of several people with chemical and electrical sensitivies, including Sam and Nathan Akers, above.

At one point in the film, Lanie has this intense and heartbreaking discussion with Joe about how his illness is adversely affecting her. What was it like to film that moment?

DX: It was tough. I thought for a long time I was going to be filming the unraveling of their family, and I was not happy about that. I was very conflicted about it. The film, I think, is an objective look at how this illness affects people's lives. That said, I'm rooting for everyone to get better and for their relationships to hold together. But there's an interesting catharsis that happens filming people who are that vulnerable. I think me being there with them, having someone witness what was happening, lent validation that their efforts mattered, that someone cares what happens. And they let me film them because they thought that getting their story out there would make people like them feel less lonely.

There are frustrating moments in the film where, as a viewer, you want to judge people for not trying harder to get better, but it's so easy to say that as a person who isn't experiencing it. Did you struggle with that kind of judgment?

DX: The big blow-up that happens between Lanie and Joe in the film, the whole time I was filming I wanted to say to Joe, "Just say you're sorry, just say you're sorry, just say you're sorry." In the same sense that I'm rooting for everybody, there are moments where it seems like the choice is very easy, but for them it isn't. In terms of judging them, my producer David H. put it so succinctly. He said the director's job in the field is just to witness.

You don't get into the medical side of these illnesses in the film, but did you read up on the clinical aspects of it?

Absolutely. It was interesting. Compared to things like HIV or cancer or multiple sclerosis, this is a grossly understudied illness. Harvard is now in the beginnings of the first comprehensive study of this, and there are treatments out there, but there isn't one treatment that works for everybody. I decided early on that there are already other films that really focus on the sensitivities. But I hadn't seen a film that tried to tackle the idea that empathy is the greatest advocacy.

What other questions do people ask you about this film?

People will often ask in audiences, and very genuinely: "Do you think it's in their heads? Do you think it's a mental thing?" And my answer is always, "I think that's the wrong question to be asking in this situation." Before we understood how they worked, multiple sclerosis meant you were a hysterical woman. PTSD meant you were a man of weak constitution. With HIV, you were gay. What those have in common is that the blame is inadvertently put on the person who is sick: It's your own fault. And I think people with chemical and electrical sensitivities fall into that same pattern. My hope is that you see enough of yourself in these people—musicians, spouses, dog lovers, social workers—so that you ask why these people are allowed to be on the fringes of society. That's all I'm trying to do. I'm trying to show you someone who isn't so different from you.

The Sensitives screens as part of the Big Sky Film series at the MCT Performing Arts Center Wed., Sept. 6, at 7 PM.

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