The coronavirus vaccines have more side effects for women than they do for men, and no one who was pregnant or lactating was included in the initial vaccine trials. These are just two recent grievances illustrating how casual misogyny intersects with medicine, which is, of course, nothing new. The Berlin-based artist collective Feminist Health Care Research Group—led by Inga Zimprich and Julia Bonn—has been creating resources to educate audiences about medicine since 2015, hoping to empower them to play a more active role in their own health care. The group achieves this by conducting oral history interviews with socially active providers, and archiving feminist health care pamphlets and books. They also host workshops—sometimes in the form of art installations—and produce zines intended both to break the silence around women’s health and educate people about their own bodies. This sort of patient-driven knowledge inspired Caren Beilin, a professor at the Massachusetts College of Liberal Arts, to write Blackfishing the IUD (2019). Beilin developed a chronic autoimmune disease after getting a contraceptive intrauterine device made of copper. Through patient forums, she learned that her experience was not unique—in fact, several forms of birth control can have debilitating side effects, a fact that many users feel should not be normalized. Eventually, Beilin turned these patient stories into a book and a podcast of the same name. Below, the writer and the collective discuss why they turned to art and experimental literature to deal with the inadequacies of women’s health care, and the advantages and limits of this approach.
CAREN BEILIN: With my book Blackfishing the IUD, I often felt like this snooty little artist interested in experimental literature and in writing perfect little sentences, when really, all I wanted to do was warn other women about the copper IUD. Eventually, I stopped caring about how I did it—I just needed to issue a warning. You’re also building a bridge between art and health. Does that bridge feel natural, or temporary, or unsustainable?
FEMINIST HEALTH CARE RESEARCH GROUP: We were going to ask you the same thing! While in art school or when reading academic art theory, we found it difficult to take political or feminist standpoints. The norm was often to defer to someone like [Jacques] Derrida instead of expressing concrete political desires. When we began to work as the Feminist Health Care Research Group, we started to read things like self-help books that have sometimes been dismissed as unserious. They include instructions for things like checking one’s body temperature or cervix mucus. We were working through a lot of internalized academic policing, and through ideas about how proper contemporary art should look and speak. We often felt embarrassed by our approach—is it too personal? Is this still art? We heard that second question a lot.
Reading your book, we noticed you made use of a number of male authors. We wanted to ask you what you got from these writers. How did they help you through diagnosis or coping?
BEILIN: I completely relate to what you’re saying about recovering from academic policing. Writing that book, I had recently gotten a PhD where I was enmeshed in theoretical reading. Then, like many PhDs, I couldn’t get an academic job anywhere. I was working in a bookstore for $15 an hour, and it made me feel like I was living on the outside. But then again, I’d always been on the outside—I had never felt very comfortable entering into conversations about theory. Being in pain due to my IUD was the most political thing that’s ever happened to me. I was suddenly a victim of this medical device, and of an industry, and it gave me special powers to read in a way that I never had before. I could use that power if I related everything to my experience, which of course, is supposed to be the wrong way to read—or so we’re taught. But suddenly I could read [Gilles] Deleuze and [Félix] Guattari, having become interested in metal as this actual material that has harmed me. I could see that they were very interested in actual materials too.
I was also furious and traumatized, which allowed me to have very little patience for things I might have otherwise just ignored. After my IUD experience, I felt more like a woman than I’d ever felt, which means I felt more abused than I’d ever felt. Walter Benjamin has this very romantic essay where he’s unpacking his library, and reading it now, I see that he’s comparing his books to slave women who need to be saved. I can no longer just ignore that part and say, “oh, that was just part of the time.”
I’m curious where you find information. You are doing so much archiving work!
FHCRG: We founded the group six years ago, and started conducting collective research based on our own experiences rather than on academic conventions. We started by visiting and learning from organizations that take alternative approaches to medicine. We were trying to figure out what kind of self-organizing would empower us to be active participants in our own health care. We held workshops where we checked in with our bodies and recalled personal experiences we had with a given topic, like caring for others or encountering the health care system, and asking how these have been political experiences.
At the Feminist Women’s Health Center in Berlin, staffers gave us an overview of the different topics they offer counseling on. At the time, we were a group of thirteen or so people, mostly cis women, and as they spoke, we looked at each other and just knew that each of us had been affected by at least one topic, even though we’d never shared our experiences. That also meant we had cut ourselves off from the networks of support that we can offer each other when we create space to be vulnerable.
BEILIN: A lot of people are abused by the medical system, which can be traumatizing on so many different levels. Maybe it occurs in your one-on-one interaction with your doctor, or in dealings with health insurance or the pharmaceutical industry. Maybe it’s the misinformation, or the way research is conducted. I’ve found that if you ask people, “how is your experience with health care or the medical system?” many will say, “I don’t have any stories about that. I’m fine.” But if you ask more specific questions, like “have you ever experienced trauma involving birth control?” often the response is something like “yes, I had this emergency surgery to get something removed that was embedded in my uterus,” or some other story. One of the slogans for IUD activism is “make the connection,” because so many people who have this device are being told, “oh, you’re just depressed” or “oh, you’re getting older so your joints just don’t work as well as they used to.” It’s very difficult to make the connection—both to other patients and to the device—when a whole industry is saying that this thing is harmless.
FHCRG: We’ve been researching the health activism that took place in the 1970s and ’80s, and we found out about many forms of action, like self-help groups, vaginal self-examination groups, and radical therapy groups, which we still consider relevant today, though the second wavers did tend to focus predominantly white and cisgender women. We have some early feminist health books in our collection in which writers were criticizing the IUD and its symptoms. As early as the ’70s, the authors analyzed the side effects of different contraceptive methods and tried to find alternatives. Later, these women opened the first feminist health center in Europe, here in Berlin. It was modeled after American Free Clinics.
BEILIN: The dominant feminist discourse around contraception is that it represents this amazing freedom, period. But there are so many other feminist ways of thinking about it. After publishing the book, I gave a reading with a poet and herbalist named Tessa Micaela, who told me, after the reading, “just so you know, in herbalism school, we’re told that the IUD causes rheumatoid arthritis.” I had been desperately trying to find information about what had happened to me, and a bunch of herbalists in school in Vermont already knew! There are all these different currents of information and knowledge, but the dominant discourse remains so dominant.
FHCRG: Certainly the pharmaceutical industry has something to do with that. We started from exactly this question: where do we get our knowledge about our own bodies?
BEILIN: How do you make people feel safe sharing in your workshops?
FHCRG: One of the most basic feminist principles is: share your personal experience and understand its structural root. Our first workshops felt very risky; we got very personal, and we worried it would be too much. But when we first gathered a group of twenty or so cultural workers, we found this huge longing to open up about things that we often suppress. Doctors sometimes play a key role in disappointment, humiliation, and abuse. But since we bestow them so much authority, that can be hard to see. When we look to them alone for answers, that means we’ve given up a lot of the resources that we have available to help each other or learn things about ourselves. We try to provide a lot of structure and clear boundaries, and we always tell people they should never feel obliged to share. Also, we have tea.
BEILIN: Writing my book was a collaborative process that involved a lot of trust building too. It contains all these personal narratives by other women who don’t necessarily call themselves writers. I loved working with them and asking them for their stories, but it was not easy. In some cases, it took many months of back and forth.
FHCRG: How did you find your collaborators?
BEILIN: Online groups are key spaces for patient uprising. I don’t use Facebook, which is where a lot of this activity is happening. So I went on Yahoo! Groups, which doesn’t exist anymore. I joined one named Copper IUD Detox, which was started by an Argentinean woman named Florencia Kot Hansen. She simply put her experience out there, and asked if anyone wanted to connect. Eventually, there were almost two thousand people, and there are even bigger groups on Facebook. Members would just write in and describe what was going on with them. It was actually some of the most compelling writing I’d ever read. It put the literary world to shame. If you want to read some good stuff, go to a listserv where a bunch of people who have a uterus have been fucked over by the health care system!
I made it very clear that whatever they gave me, I wasn’t their editor and wouldn’t change anything—that was important to me. I did have to have conversations with people about length, though. I couldn’t publish extremely long things, and I did find that many people have a lot to say once they’re finally given the space.
Plenty of the people I invited weren’t interested in participating, because it’s so personal, but some were very into it. One woman who’s in the book had a wild story—her boyfriend accused her of making up all her health problems, and eventually, he left her. She told me, “I want you to publish my story. And then I’m going to send him a copy, and he’s going to see that it isn’t just me.” Others just wanted to warn others.
FHCRG: It’s sad to realize that we’ve contributed to and reproduced the art world’s assumption that everyone is young, able-bodied, and capable of attending, say, daylong symposia. Many artists are overproducing and underpaid, so if you get sick, it becomes impossible to maintain that pace. We are part of Sickness Affinity Group, a Berlin based support network of cultural workers trying to undo our own ableist working modes. The group was greatly inspired by the work of Canaries, a US-based support group, as well as by Power Makes Us Sick, an activist collective focusing on autonomous health. We need these support structures to help us resist the competitiveness that’s so deeply ingrained in artistic production.
What are you working on now?
BEILIN: The book has connected me to many interesting people. In 2019 I got to speak at the FDA [Food and Drug Administration] meeting on metal devices. It’s a big issue; there were people there with hip implants and various birth control devices. I’m not really convinced you can just talk to the FDA and then they’ll fix everything. I think the real activism lies in adjusting everyday norms, like you mentioned.
I have a new novel, Revenge of the Scapegoat, out in Spring 2022 from Dorothy, a publishing project. The main character has rheumatoid arthritis, and I would say it’s a comedy. So many people have a chronic illness, so it’s awkward, I feel, that so many protagonists do not.
How will your work continue? Will it be an exodus from the art world, or will you keep working to construct that bridge?
FHCRG: Currently, we’re working toward making our efforts more accessible by digitizing some of our research. In 2020 we issued a zine called Being in Crises Together that contains prompts, interviews, and guidelines for practicing mutual support. Currently, Inga is creating a work investigating the moment that the Radical Therapy movement became self-organized in Europe. It also probes the role whiteness plays in self-organized therapeutic spaces. Since the pandemic, many people have been looking to articulate positions around health care, but still there’s a huge risk that all we’re left with is this hype about care and feminism while art institutions remain as inaccessible as they were before.
—Moderated by Emily Watlington