New documentary from Hopkins filmmaker offers an intimate look at surgical breast cancer interventions

Bernadette Wegenstein, a Johns Hopkins professor of media studies and filmmaker, recalls working on her new documentary, The Good Breast, and feeling a bit hesitant to put too much of herself into the film.

Image caption: Bernadette Wegenstein

Yes, her voice is heard asking questions, since she's the director. And her considerable research shaped The Good Breast, which is a deep dive into understanding surgical breast cancer interventions in a cultural context. But could she also be more of an onscreen presence shaping the cinematic experience?

"My editor, who is a wonderful, experienced filmmaker, asked me, 'Look, do you think Werner Herzog asks himself this question?'" Wegenstein recalls during an interview in her office on the Homewood campus. "The problem is that for female documentary directors, there isn't really a history of female participation in their own works in the documentary canon in which to easily inscribe myself. Most women in documentary like to remain unnoticed. So I do have these questions—Do I have the right to do that?"

With The Good Breast and her current project, Devoti Tutti, Wegenstein sees herself slowly putting more of her fingerprints in her films in different ways.

The Good Breast follows two surgeons—Lauren Schnaper, director of the Sandra and Malcolm Berman Comprehensive Breast Care Center at the Greater Baltimore Medical Center; and Sheri Slezak, the chief of plastic surgery at the University of Maryland—and four women undergoing breast cancer treatments. It's an in-depth portrait of contemporary breast cancer interventions, as Wegenstein and her cameras follow these women into operating rooms for procedures including a mastectomy and a latissimus dorsi flap reconstruction procedure.

Wegenstein also accompanied doctors Schnaper and Slezak to Catania, Sicily, during the Festival of Saint Agatha, who was canonized for sacrificing her breasts when refusing the marriage advances of a Roman prefect in the third century A.D. Wegenstein parallels the breast sacrifice associated with Agatha's martyrdom with mastectomy. Interviews with men and women of Catania inform her current project, Devotti Tuti, an exploration of Saint Agatha's story drawn from myth and how she's venerated by men today.

For each film, Wegenstein is finding different ways to translate her ideas to the screen, including creating an animated Agatha character to follow her story over the centuries in Devotti Tuti. Wegenstein wants to venture into those areas that are difficult to show and imagine, even if that means feeling a little awkward while getting there.

"The first time we were in the OR, I think the cameraman was a little uncomfortable, but he got over that very quickly, and certainly I did," Wegenstein says. "I have absolutely no hesitations, unfortunately; I'm completely curious. If I know there's another layer behind something that I might be able to see, I'm going to go look. "

The Good Breast makes its Baltimore debut March 13 at the Sheppard Pratt Conference Center at 6 p.m., and a screening of the documentary will be followed by a panel discussion at the George Washington University Cancer Center March 27 from 5-7 p.m. Wegenstein is also a featured speaker at the upcoming Northeast Modern Language Association convention at the Marriott Waterfront Baltimore March 25, with a talk titled "Is There Such a Thing as a Feminist Documentary?"

The Hub caught up with Wegenstein to talk about showing the mastectomy procedure, Saint Agatha, and the power of myth.

Tell me a little bit about how you came to the subject matter you're exploring in the The Good Breast.

My previous work had always included the question of bodily transformation, and particularly the female body. Historically I came to it from a feminist angle, a point of view that looks at the female body as a body in search of a bigger truth. In our Western cultural imagination, it is the secondary body, and as such, the female body has to adapt to the male body. So [the female body] has a big question mark on its head: "Where am I going? How do I fit in? How do I look, and how do I satisfy the visual realm and the expectations of this body in it?"

So when I looked at breast cancer, I realized this illness is so highly in the hands of plastic surgery that I wanted to find out more about mastectomy and the necessity of removing a tumor. For me the first question was, '"s it even necessary to remove this body part?" And if it is, how does its reconstruction actually work? Who says how this breast is going to look? That interested me as somebody coming from a background of studying the body historically and culturally, and what kind of technologies enhance the body.

What I found in breast cancer is that it's not always the case that surgeons say, "Yes, we have to remove this breast." It is mainly the patient's wish to remove it, which is a very understandable wish. When a body part is afflicted with an illness you want to get rid of it, even if amputating it is not a guarantee not to have cancer anymore.

That shaped the idea that when you have a "bad breast" you want to get a "good one"—inspired by psychoanalyst Melanie Klein's theory of the good and bad breast—one that doesn't do you any harm and doesn't disappoint you. And I found a lot of women wanted to be perfect, to have the breast they never had—a breast that is invincible in its perfection and beauty.

And while getting that breast, they were also sometimes thinking, "Well, I could do other interventions, like a tummy-tuck, since I'm already under the knife." So I wanted to show how our self is something very unstable, and our desires for a cure include also beauty aspects and healing wounds that aren't necessarily flesh wounds. As one of the characters says, "I always wanted to have a daughter, but I never had one, and the removal of the breast just brought that memory back for me." Now, that clearly has nothing to do with breast cancer but with her particular identity. I wanted to show how deeply [women] were affected by [breast cancer] beyond the surgery, and that the surgery's only one way that we are carved into and what the illness does to us.

Any medical process is intimate, and you're getting into very personal situations. What was it like building those relationships and shooting during operations and procedures?

At a screening, this is always the first question that people ask because of how intimate we get with the women [in the film]. The characters that I work with in my films become friends. We have two upcoming screenings where there's going to be a panel discussion with some of the patients in the film, and we're getting together as friends and having a milkshake before dinner to just catch up. So I'm in touch with the people that I portray in my film a lot.

What you see in my films is my relationship with these people, and it is a real relationship. A patient like Carol, I'm fully showing her mastectomy in the film, a decision which prevented the film from being shown much more commercially. But I made that decision because I really wanted us to understand what it means to have a mastectomy. I didn't want to sugarcoat anything, as not only the pink ribbon movement but a lot of other paternalistic institutions are trying to do. I really feel that there's nothing more healing and powerful than the truth.

You were told that showing a mastectomy would prevent a the movie from having any kind of commercial possibilities?

[Nods] There were many people who even said, "You'll never be able to use this [footage]." But once I showed the mastectomy, my editor and I decided we needed to show Doris's, another patient, lat-dorsi because that's the healing cosmetic procedure that really gives her the breast that she wants.

Image caption: A photo still from The Good Breast shows Doris laughing with her surgeon

Image credit: Bernadette Wegenstein

That's all I care about, what the documentary character wants. And I want us to get there and really believe in the character and her wish, even if it might seem like the most absurd wish. But I want to take her wish seriously, I want to see why she wants this breast, which in Doris's case was difficult to understand. But I want people to understand what it means—it's hard to watch, and as you go through the film you feel like you lost your own breast and got it reconstructed.

I'm surprised to hear that given the graphic nature of what we see not just in film and media, but even in documentaries, that a mastectomy is considered too much.

I defended it, and I'm very happy with it now, and when I go to screenings, it's a really cathartic moment to go through for a group for women who've had it.

And I'm happy I didn't make that concession. I'm sure it'll take a few more films for me to become more commercially successful. I have educational and certain television distribution for all my films, but they're not mainstream. And I do want to reach a lot of people, and the idea of moving a lot of hearts is very beautiful. I want to go there, but it needs to come from the film, from the content, and it needs to be right.

In the film that I'm making now, we're animating the story of Saint Agatha and her martyrdom, and as a result we're drawn into this beautiful, mystical world. And that's exciting. And in the film I have an interview with a fisherman, to portray the belief of fishermen and how they have felt for thousands of years, just like a myth. There's this one line where he says, "You know, we don't do really anything, we just fish, and the fish tells you what to do."

It's one of my favorite lines because if you're really in tune with your medium, which in his case is fishing, the medium will come to you. It will ask you to do certain things at a certain time, and I knew for The Good Breast that I wanted to show the mastectomy that everybody was afraid of.

Tell me about the bridge between the two documentaries.

In my research about breast cancer in the Chesney Medical Archives, I came across a doctor who was the first breast surgeon in Baltimore, Dr. [Edward F.] Lewison. He was Jewish, and yet he was a collector of representations of Agatha's martyrdom. He was also the owner of a breast relic, a little piece of the bone, apparently, of Agatha.

So when I interviewed his late wife, because he had died [in 2008] and she's in the film, it was so interesting to me that there was this Jewish doctor, who clearly wasn't worshiping a relic like this, but he wanted to have a piece of the woman who had given up her breast for a greater good. That's what that myth is about—it's about a woman who was harassed by a patriarchal governor, and he says, "I want to marry you," and she says "No." There are popular versions of the story that try to romanticize it. And there's, of course, the Christianized version where she was a nun, and she wanted to go with Jesus and she said, "No, I'm already taken." All these versions tell the same story about a woman saying no to some sort of a system.

Image caption:Devotti Tuti tells the story of Saint Agatha, whose breasts were amputated after she refused a marriage proposal

Image credit: Animatic by Adriana Copete for 'Devoti Tutti'

The story that is really interesting is that he locked her up and imprisoned her, and then he says, "Well you can still make up your mind, but if you don't, I'm going to take off your breasts," and she says, "Go right ahead. I'll give you my breasts, because I can nourish the world with my inner breast." That's the hagiographical version of what she said.

It fascinated and touched me deeply that Agatha is said to have said, "I don't need my breast because maybe there's something else I can do." And so I thought of the breast as a sacrifice already for The Good Breast, because I saw that the women who were told by Dr. Schnaper, "Look, you don't have to do this," they still wanted to do it, and they still went through it to certain extent as martyrs. Because a martyr is someone who gives something up for a greater good, and obviously in the Christian tradition, Jesus is the ultimate martyr, but in pretty much any religious tradition, there is this concept that there's one person who says, "OK, I'm going to do this, but then all of you will be better." So I was interested in how that [idea] translated into the decision for a mastectomy in the stories that I told in The Good Breast.

Then I went to Catania where they celebrate this breast saint once a year with Dr. Schnaper and Dr. Slezak. It was unbelievable. There were thousands of men dressed in white, celebrating the martyrdom of this saint in the third largest celebration in the world of any saint. And I thought, "OK, maybe there's something even bigger here. What do they actually think of this breast? What is going on here with these men especially?"

We produced the [Catania] shoot with Dr. Schnaper as planned, and I had the fortune of having three camera crews with me because we knew that the festival was very hard to cover. And so I said let's get everything we can, and let's develop a few characters. The fisherman looks interesting, the nun, there were street children. I had a certain intuition for people, which you need when you make documentaries.

Then I didn't look at this footage at all until we finished editing The Good Breast, and I always actually wanted to put more of that festival in The Good Breast. We tried it and tried it and it was almost like Doris's DIEP flap surgery. The body of the film rejected it. We ended up with a little bit of it in there, but it's a 95-minute film and the Agatha total in there is five minutes.

So I knew I needed to make another film with this footage, because I really wanted to get to the bottom of it, and through other funding, opportunity with other producers, I was able to go back twice already. And I found a completely other universe. You know how ants like to gather under a brick, for instance? That's how it feels to me in Catania. I'm lifting this brick and, oh my God, what's going on?

And at first you thought it's just a brick.

Exactly. First you thought it was just a brick, and there's several bricks. There's the church, the mafia, all of these interests own the story of Agatha. They have rituals where they have keys and they hand off the key from the government to the church, and then to the mafia-men. I realized how immensely important the story is for them as a collective to work together. I mean if you took her out of the picture, they couldn't survive. So this is a film about the power of storytelling and the power of myths in our minds and our dreams.

So I want to address this story from a feminist point of view, but if all of these stories have been written down by men and are male interpretations of the myth, where is she? That's when we decided we'll animate her into this myth, and we'll give her a kind of voice, shaped by the various voices that they imagine her having, but also giving her my voice.

That's exciting for me, but also frightening because that's where as a filmmaker and artist I really become vulnerable. If you have an animated character that you create out of scratch, you give her this intimacy and it comes from you, then suddenly this [film] is very different.

I can only imagine, because you're having to imagine a figure that is informed by your research but also truthful for the people who have this relationship to this figure over their entire lives.

And that's the challenge right now. My editor always says, "We've created a monster but I like it." And I know I'm that monster, to a certain extent. I know with this film that I have to go very slowly. That's my intuition. My Italian producer emailed me today, and she said, "Ci vuole di coraggio e di denaro"—We need courage and money. I have a good animator and we have a rough cut. People like the rough cut, but there are certain areas that are not resolved, namely how we're getting to her backstory, who is telling us this story. And that begs many questions. Why did she revolt [then] only to have this obligation to satisfy all these men, which is how I see it? Because they pray to her, they want her to solve everything, and she's just exhausted.

That's interesting, because you're having to ask yourself, "What is her agency in this situation, and I'm basing that on thousands of years of —"

—Of not having any agency at all. So from a feminist point of view, it's a really funny kind of exercise, but it's very satisfying because you're kind of rewriting history. I'm trying to do that, which we all know didn't happen, because women are still abused and women still don't have voices. But she learns how to take care of herself and how to develop a super power through the loss of the breast, and that is where The Good Breast and Devoti Tutti come together, because all of these characters become stronger and live on without the breast and, ultimately, what I'm saying, if there's a message, it's that you don't need the breast on your body. You can do a lot of other things without it—for example, flying, because in Devoti Tutti the amputated breasts can fly and teach Agatha to fly. You have to wait a little to see it in the film. All I can say now is it's very exciting.