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Talking Points: Joanna Kempner

Joanna Kempner, an associate professor in the Department of Sociology at Rutgers University, is the author of Psychedelic Outlaws: The Movement Revolutionizing Modern Medicine, which was just released this week by Hachette. She joins us to discuss how this rich sociological study of patient advocates relates to alcohol and drug history.




Please tell readers a little bit about yourself.


I’m an associate professor in the Department of Sociology at Rutgers University, specializing in science, medicine, and inequality. Most of my research, including my first book Not Tonight: Migraine and the Politics of Gender & Health, has focused on the history and sociology of pain. However, I've always been intrigued by "forbidden knowledge" and the political efforts to suppress scientific inquiry.


While my discipline is sociology, my curiosity drives me to follow ideas wherever they lead. Since every idea has a history, I usually end up in an archive.


What got you interested in the history of alcohol, drugs, and pharmacy?


The Mütter Museum at the College of Physicians in Philadelphia sparked my interest. Have you heard of it? It’s not for everyone, but readers of Points History would love it. The museum, originally educational, is packed with medical specimens. There’s a wall of skulls, wax models of skin diseases, jars filled with fetuses, a woman whose body turned into “soap,” and the conjoined livers of Cheng and Eng Bunker, the original ‘Siamese twins.’

My real passion for the history of drugs ignited a few years later when I returned to the College of Physicians’ medical library to research the history of migraine medicine. Opening centuries-old journals felt magical; you never know what fascinating discoveries await you.


What motivated you to write this book specifically?


It’s personal for me. When I started having severe headaches at age five, a pediatrician told my parents that I had a “Type A personality” and nothing could be done. Thankfully, my mom, who had chronic migraines and had been hearing the same “it’s all in your head” advice from doctors her whole life, decided to ignore him. She did everything she could to find me help and made sure I understood that my pain was real.


This experience gave me profound empathy for those overlooked by the medical community and shaped how I approach my research. While most sociologists study big social problems like poverty, racism, and access to healthcare, I focus on issues that might be considered big problems but are continually overlooked. I'm drawn to these glaring gaps in healthcare—where real, debilitating symptoms are dismissed with a disheartening, "nothing's wrong with you."


It’s very difficult to study ignorance, but people who are chronically ill possess an extraordinary sensibility about what's missing in medicine. This disconnect between patient experiences and medical recognition drives my research. It's appalling how people with cluster headaches have been neglected by mainstream medicine. But I also think this is a hopeful story. It’s inspiring to see patients, against all odds, pioneering the use of psychedelics for pain relief.


Explain your book in a way your bartender won't find boring.


Psychedelic Outlaws is about an incredible group of people with cluster headaches—one of the most excruciating diseases in the world—and the extraordinary lengths they went to find a treatment. In the late 1990s, these patients, ignored by traditional medicine, turned to the internet for answers. They discovered that psychedelic mushrooms could stop their pain and decided to do their own research using self-experimentation. They developed highly effective dosing protocols in record time.


The story could end here, but it gets even more interesting. In 2004, they funded a study at Harvard to test their protocol. The twist? The psychiatrist leading the study, an early pioneer in psychedelic medicine, had a troubled legal history that ignited a scandal, threatening to derail Clusterbusters’ efforts to share their life-saving treatment.


It's an epic story spanning three continents, multiple belief systems, and 150 years of medical history. It also offers a window into the backstage politics fueling the psychedelic movement.


Did you uncover anything particularly interesting or surprising during your work on this project?


Psychedelic history is so surprising that I often thought I might have imagined some of my research in a fever dream. But what really shocked me was the depth of medical failure in treating pain, especially for cluster headache patients, who experience a high rate of suicidal ideation. One Clusterhead shared a chilling story: his doctor, frustrated with failed treatments, suggested suicide as a solution, saying, "You know the only cure is a .357." I thought it couldn’t get any worse, but then I heard the same story from someone else in a different part of the country.


I’ve studied the politics of medicine for a long time, but this was next level. There was no bottom to how awful medicine had treated these people.


What do you think is the most important takeaway from your book?


This story might be extraordinary, but the basic issues are problems most of us have experienced. These are regular people, desperate for relief, just like many of us struggling to get the healthcare we need. The main difference? They found a treatment that worked. Psychedelics seem to be saving lives, and I'm excited to see more research in this area.

We often have a very utopian or pessimistic view of new interventions. But there’s no magic bullet to fix what is ultimately a social problem. What good is an effective treatment if doctors don’t believe you're in pain? And how helpful is a miracle cure if insurance won’t cover it? As Bob Wold, the founder of Clusterbusters, wisely said, “You can’t introduce transformative medicine into a broken healthcare system.”


We just have to do the hard work of making our healthcare system work for everyone.

 

The medical/pharmaceutical establishment appears to be in a crisis of popular legitimacy in recent decades. To what extent do movements like ‘Clusterbusters’ provide an alternative to top-down medical research, and how has the establishment responded?


Clusterbusters is part of a vast underground network that’s been vital to reviving psychedelic research in universities. Drug policies might have made it difficult to study psychedelics in universities, but prohibition only pushed experimentation with psychedelics underground and out of sight. Now, the underground is bringing psychedelics back to universities.


University researchers face significant legal and ideological barriers, making funding and approval for Schedule I drug research extremely difficult. Psychedelic enthusiasts fill in the gap, providing the data and resources needed for this controversial research.

While scientists often get the credit, much of the innovation happens behind the scenes.


Psychedelics are a particularly lurid subject and a wonderful spotlight for formally and informally sanctioned medical research, but this isn’t the only example of a grassroots movement by an underserved community to find medical solutions. Can ‘Clusterbusters’ provide a lens for us to understand those movements as well?


Absolutely.  I’ve written the book as an approachable narrative about science as a social network. But it’s also a perfect case study about the internet and expertise.


Has this research led to your next endeavor—what else are you working on?


Yes, I'm still deeply engaged in this research! Currently, I'm focusing on a common practice in psychedelic science that I call "cyberbotany.” Think of cyberbotany as the digital version of ethnobotany. Instead of observing indigenous communities, researchers can tap into the wealth of experiential data available within online psychedelic communities. This approach is much easier than clinical research, with far fewer legal and logistical barriers.

The ethics of ethnobotany are well-explored, so I’ve been interested in examining how this practice translates into the digital realm. And it's not always clear that cyberbotany recognizes the value that diverse knowledge systems bring into the field. Sometimes cyberbotany is conducted in a respectful, equitable way, but it can also resemble biopiracy. Exploring these dynamics is crucial for ensuring that the digital study of psychedelics is both ethical and inclusive.


Based on your research and experience, what do you see as the future of the field (of alcohol, drugs, and pharmacy history)?


Whatever it is, I hope to be reading many, many more critical drug histories.

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