Kati Standefer is a writer and teacher with an incredible story to tell. We first met Kati when she joined our Post Disposable workshop in collaboration with KaosPilot in Denmark. When she applied to come to the workshop, she had just started working on her book and was looking for new ways to think about designing circularity into medical implants.
Her own experience with a defibrillator was the catalyst for her work. It led her to trace the whole life cycle, visiting the mines where the raw materials were sourced all the way through to examining what happens at the end of their use. It was a fascinating experience for all of us at the workshop to learn about this category of product and witness Kati’s journey to completing her book (which was published November 10th — check out the New York Times review here) over the last few years.
Read on for more details on her amazing approach and how she completed this monumental project.
Can you give us an introduction to yourself and your work?
I’m a writer based out of New Mexico. For the last eight years, I’ve been working on a book called Lightning Flowers: My Journey To Uncover the Cost of Saving A Life, which (finally!) came out on November 10. The book opens on the night in 2012 when I took three accidental shocks to the heart from my implanted cardiac defibrillator (ICD). I’d had the device implanted in 2009, after I passed out in a parking lot and was diagnosed with a genetic arrhythmia—Long QT Syndrome—that could cause the heart to quiver instead of beat, sometimes leading to cardiac arrest and sudden cardiac death.
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In theory, an ICD goes off when you’re unconscious, resetting the heart so it can beat normally again. But that night in 2012, mine went off while I was awake, because of an error in its settings. To take 2,000 volts to the heart is a searing, otherworldly experience, and in the moments after the shocks stopped, I found a strange question landing in my body: If the device had saved my life, and the metal inside me had come from a conflict minerals area (where women were kept as sex slaves or children were conscripted to work), was it worth it?
This is a 3-D x-ray of my ICD, two functioning lead wires, and one broken lead wire (which drives the narrative of the second half of the book). (Photo credit: The Mayo Clinic Radiology Department, June 2017)
I will never know quite why that question landed in me, but I became obsessed with it. The metal in my body suddenly felt unpredictable and foreign, the mark of my complicity in a long supply chain whose ethical questions had never been teased out in these terms. Over the years that followed, I expanded my inquiry to think about the ecological devastation of mines carved out of an endemic jungle, and the complicated ways even a conservation offset impacts indigenous people.
Conductive interviews with villagers in Ampitambe, Madagascar, outside Ambatovy nickel and cobalt mine. June 2014. Photo credit to my interpreter Olive, whose last name I no longer have.
I visited mines in Madagascar, Rwanda, and South Africa, as well as across the American West. Lightning Flowers is the story of my journey to understand whether other lives were lost to save mine—and whether, in the context of the American healthcare system, I might have been better off without my ICD.
What motivates you to do the work that you do?
As a kid growing up outside Chicago in the 1980s and ‘90s, I watched the few remaining scraps of forest and prairie in my area paved over and filled in. Subdivisions of identical McMansions exploded across the land everywhere I looked. Repeats of the same big box stores filled new strip malls. To me, a girl who loved tangled woods and spans of wetlands, who spoke to trees and animals, the built world was stifling and sad.
We talk about reality as though it exists in opposition to the sensory world. We speak as though growing up requires turning our back on other species, as though the timelines and deadlines and bottom lines of the human world are sacrosanct. We act as though it is reasonable to ignore or even exploit other humans in order to fulfill a company’s profit mandate. The journey I took to write Lightning Flowers helped me hear the voices I’d been trained to forget. It helped me understand that although all beings live by consuming resources, humans have the option of taking resources violently and brutally, or with a consciousness around what it means to receive and an ethic around giving back. Indigenous peoples have long carried knowledge around the latter, while our culture’s view of what is “normal” is much closer to the former.
In the medical portions of the book, readers repeatedly encounter the moments medical practitioners and healthcare bureaucracy fail to see me—and perhaps it is this that has made me so desperate not only to see others who are ignored and dehumanized, but to give these stories voice. Colonization and capitalism are both forms of trained blindness, and writing is one vehicle for puncturing their myths.
At the Mayo Clinic for specialty care, June of 2017. Photo Credit: self.
How did you find out about the UnSchool, and what motivated you to come?
Now this is funny. A few years ago, as an alumni volunteer, I interviewed an applicant for the college I attended. The person I interviewed grew up homeschooled in California and participated in a lot of unconventional learning programs, including a month-long writing class hosted by a program called… the UnSchool. As a writer who prefers teaching in formats outside traditional academia, I thought this would be a dream gig. I looked the organization up online and signed up for their mailing list.
OR SO I THOUGHT! Instead, I’d signed up for this UnSchool, and before I realized what had happened, I found myself fascinated by the content I was receiving. It was meant to be. The #PostDisposable course in Aarhus, Denmark, appeared in my inbox shortly after I signed up. I felt an immediate resonance. At the time, I’d been writing the book for six years—I’d been to mines across the African continent and talked to countless experts—but I couldn’t figure out what, exactly, I should conclude. My book asked a giant question, and even though I knew it couldn’t be answered neatly, I wanted to be able to gesture more clearly toward some solutions. It seemed like the #PostDisposable program might help me do that.
In a mine shaft at Cooperative COMINYABU in Busoro, Rwanda, where tin, tantalum, and tungsten are extracted as part of a certified conflict-free program. August 2016. Photo credit unknown.
What was your experience at the UnSchool like?
Before I traveled to Denmark, I assumed I would report from inside the course (with the permission of those involved, of course), using the “journey narrative” of traveling to and attending the program as a framing to discuss related ideas in my book. Once I arrived, however, I realized I was receiving something much more subtle. Though I’d spent that spring reading about concepts like the Circular Economy, I didn’t have anyone to talk about them with. Now I was on the sixth floor of Kaospilotsterne, overlooking the red tile roofs of Aarhus with fashion designers and professors from all over the world, for the first time in conversation about design concepts. I came to understand that we could ask more of all designers—that values other than efficiency and cost could be embedded in our products. I was lit up by the quality of the conversations and the way the UnSchool’s specific brainstorming strategies could be used to explode some of the world’s most “wicked” problems. The program made me braver and more confident in my thinking.
What was the main take away you had from coming to the UnSchool?
I was deeply impacted by a writing prompt in which we were asked, “What is the dream and what is the challenge?” Here, for the first time, I allowed myself to give up the idea that I could—myself!—solve the resource issues and American healthcare system snaggles associated with the implanted cardiac defibrillator. Instead, it occurred to me that I could challenge the designers and politicians to achieve particular outcomes--truly believing that if we declared the outcomes non-negotiable and worked our way backward, change would be possible. I’m clear-eyed about the hurdles this thinking faces, and yet if I couldn’t articulate such a vision, who would? Both imagination and a stubborn determination are required for disruptive design, and we so often cut ourselves off before we even begin.
The paragraphs I penned in the workshop appear, in revised form, in the Epilogue, and that whole chapter is deeply informed by my time in the #PostDisposable program.
Working with the group during the UnSchool workshop in Denmark
How did the UnSchool help you evolve your work?
I knew before the #PostDisposable program that there was a fledgling pacemaker recycling movement. But I hadn’t yet investigated what it looked like. During my UnSchool program—as I became more aware that the ICD was a series of design decisions, and that values were encoded in each design element—I began to wonder more fiercely whether there was a compelling reason the ICD was a single-use object, or whether this aspect of the device was simply the result of our single-use-oriented society, tangled bureaucracy, and a profit motive that drove companies to sell new high-priced technologies to patients (paid for by insurance), while incinerating used devices instead of tackling the challenges of reuse.
About six months after #PostDisposable, I spent a long morning at brunch in Ann Arbor with the cardiologist Dr. Thomas Crawford of Project My Heart Your Heart, learning about the standardized process they’re developing for cleaning and testing devices that have enough battery life to be useful to other patients. (Pacemakers are at the front of this movement rather than ICDs because they are—to oversimplify a bit—life-sustaining rather than prophylactic in most cases.) Because of current FDA regulations, used devices can only be implanted abroad, but a series of important studies suggest there’s no increased risk for patients with these recycled devices, other than a need for replacement sooner (due to lower battery levels at implantation). My UnSchool training encouraged me to pursue this line of research, gave me a different set of tools for approaching its possibilities, and empowered me as a writer to push where policy change might make the most difference.
Tell us more about your initiative(s), and how is it all going?
I’m still a bit stunned that the book is finally coming out; it felt like I would never finish this book, and… now it is done. I recently spent a week in the studio recording my own audiobook, and it was such a dream to feel the way all the different pieces came together—that despite how messy it felt over so many years, I have written the book I was trying to write. So far it’s been well-received—Lightning Flowers received a rave, starred Kirkus review in late September, the book was selected by Oprah Magazine as a November 2020 pick for their Reading Room, and I’ve been booked by NPR’s Fresh Air.
All this feels particularly poignant because, as the launch date approached, I was remembering that the real purpose of the book was always to hold space for conversations we wouldn’t otherwise have. In the ecosystem of a culture, it’s the job of a writer to interrogate, reframe, push back—to point to possibilities the rest of us, in our daily grind, might not have the imagination for. I’ve spent eight years asking a giant, unanswerable question with my very body, and now it is time to seed a lot of other people asking that question. We won’t know the real outcome of this book for a while yet, but I am very ready to begin a life in which I work less like a hermit and more as a public intellectual. As climate change and resource issues hit a boiling point, it’s time to take these questions very, very seriously. I hope I can be of use.
Villagers in Nahampoana, Madagascar, affected by QMM ilmenite mine. They reported being kept out of ancestral forests by guards and cameras. June 2014.
How can people engage with, support, or follow your work?
The best way is to order a copy of the book! Lightning Flowers is available anywhere books are sold, although I’ll encourage you to place your order with an independent bookstore. (In this COVID moment, they really need our support.) Folks can follow me on Twitter or Instagram at @girlmakesfire, or check out upcoming events on my website: www.KatherineStandefer.com. I’m seeking to meet with 100 book clubs virtually over the next year; if you’d like to read Lightning Flowers with some friends and zoom me in, please get in touch! (You can listen to me talk about why the book is so relevant right now in this fall media showcase; I’m on at 16:26.) Finally, I’d love to speak to university groups, NGOs, podcasters, or conferences. Lightning Flowers unfolds at the intersection of so many fields—medical technology, healthcare, mining, supply chains, conflict minerals, our cultural relationship to death—and I can’t wait to hold space for conversations that move us, however slightly, toward more equitable, nourishing, and ecologically stable ways of living.
Meeting the lemurs in Madagascar. Andasibe-Mantadia National Park, June 2014. Photo credit unknown.
REVIEWS FOR KATI’S BOOK
“An affecting, crystalline memoir.”
— O Magazine
“Lightning Flowers is both a memoir and a mystery, a riveting debut book by Katherine Standefer. She faces her own heart and the technological device that keeps it beating with the sharp eye of a journalist and the dramatic pacing of a novelist. Following the supply chain from her body to conflict minerals in the Congo, we see how the world is interconnected and interrelated. Standefer is a lyrical writer who has crafted an embodied text, understanding that our survival balances on the cliff edge of our complicity and our compassion.”
—Terry Tempest Williams, author of Erosion: Essays of Undoing
“A sharp examination of the ways that a heart condition affected the author’s life as well as those of strangers halfway across the world… Packed with emotion and a rare, honest assessment of the value of one’s own life, this debut book is a standout. An intensely personal and brave accounting of a medical battle and the countless hidden costs of health care.”
—Kirkus Reviews (starred)
“In her stunning debut, Katherine E. Standefer reveals how a single piece of supposedly lifesaving machinery has forever implicated her in ruinous global supply chains, how entire economies of extraction have come to reside deep within her body. With great clarity and resilience, Lightning Flowers invites us to become intimate with the moral and environmental calculus of our own lives.”
—Francisco Cantú, author of The Line Becomes a River
“In Lightning Flowers, Katherine Standefer offers a full accounting of the cost of a single life, and it is nothing short of astonishing. She travels, literally, to both the brink of death and the edge of the world to discover exactly what it means to live. Her courage is palpable, on the page and in life. This book is utterly spectacular.”
—Rachel Louise Snyder, author of No Visible Bruises and What We’ve Lost is Nothing
“Lightning Flowers is a quest for an answer to the most basic human question: what is a life worth? For a young American woman, kept alive by a hunk of metal in her chest, the answer is to be found in the African mines that produce titanium, cobalt, nickel... the precious metals used to make our essential microelectronics, including heart defibrillators. No trial in this quest can be avoided: heartbreak and debt, culture shock and corporate empire, medical indifference and poverty, trauma and mortality. There is an alchemy of tender magic and brute force in Standefer's writing; Lightning Flowers transports us into the heart of Africa—and the heart of a woman forced to question our global, racialized economy even as she identifies the raw materials that give her life.”
—Ann Neumann, author of The Good Death
