John O’Connor, whom I happened to interview on May 5, explores a similar dynamic unfolding amid today’s psychedelic renaissance—a movement rife with magical thinking that he sees as something of a religious revival—in his delightful and enlightening new book A Short, Strange Trip: An Untold Story of Magic Mushrooms, Madness, and a Search for the Meaning of Life in the Amazon. 

Some Westerners are appropriating sacred plants while divorcing them from the traditions that gave them meaning—“colonizing them in reverse,” as American ethnobotanist Glenn Shepard puts it (p. 211). For example, ayahuasca use, despite widespread belief, may not date back thousands of years. Instead, O’Connor argues that the practice “rarely existed where Indians remained isolated from Western meddling” (p. 222). Its expansion beyond the Río Napo began relatively recently with Jesuit missions in the early 17th century and later accelerated through 19th-century rubber camps along the major river systems of the Amazon Basin. Through Western tourism, ayahuasca has come to be portrayed as “an ancient ritual for slaking our insatiable thirst for Indigenous salvation and/or for increasingly extravagant highs” (p. 223). 

During our meeting, O’Connor told me he does not “think there’s ultimately harm in appropriating a plant if you find it therapeutic, useful, or even life-saving—which a lot of people are reporting these drugs can be.” 

At the same time, he said, “we need to have an honest, good-faith conversation about where these drugs come from, what their actual Indigenous uses are, and what they are.” 

To write the book, which explores humanity’s broader relationship with psychedelics, from ancient religion to modern medicine, O’Connor worked with the Uitoto people to retrace an expedition undertaken some 50 years ago. Into the Colombian rainforest—home to begonias as red as blood and butterflies as wide as hubcaps—ventured scientific researcher Dennis McKenna and his older brother Terence, the visionary whose “tangled beard hung like an oriole’s nest past his chin” (p. xix). Weary of the war on drugs and fueled by utopian fantasies, Terence’s army of psychonauts sought a legendary hallucinogen that would turbocharge their DNA and “hasten a return to our preindustrial and preliterate past” (p. 284). 

In reality, Terence and his disciples did not transform into “eternal hyperdimensional beings” or travel via “flying saucers of the mind… ‘into the plenum of being’” (pp. 94, 30). Nor did they propel “human evolution forward to its next stage” by connecting to “the mind of nature itself” (pp. 284, 11). But they did experience auditory and visual hallucinations that led them, in a manner not unlike schizophrenia, “to adopt a new narrative interpretation of the world” (p. 95). 

Armed with the spore prints they’d brought back from La Chorrera, the McKenna brothers were “among the first, if not the very first, to successfully cultivate magic mushrooms at home, sparking a major leap forward in psychedelic history” (p. 202). In 1976, they published Psilocybin: Magic Mushroom Grower’s Guide; this April, half a century later, President Donald Trump signed an executive order expediting research into the therapeutic benefits of psilocybin and other substances of its ilk. 

O’Connor mentioned that one such mind-altering drug, ibogaine—made from the root of a Central African shrub—has shown promise in treating post-traumatic stress disorder and substance use disorders. 

“That’s great,” he told me, “but it also has a habit of slowing people’s heart rates considerably,” among other life-threatening side effects.  

“People are diving into these treatments as if there are no potential risks,” O’Connor, who teaches journalism at Boston College, added. “They don’t work for everyone—they’re not a magic bullet.” 

The remainder of the interview, which follows, has been edited for length and clarity.  

Why did you choose Terence as the focal point of the book? 

I hadn’t heard of him, and I pride myself on knowing about eccentric, overlooked weirdos from the psychedelic ’60s and ’70s. I was doing a lot of retail therapy online during the pandemic, as were many folks, and I came across his book, True Hallucinations (1989), totally by happenstance. I hadn’t known anything about it, bought it, and put it on the shelf for two years.  

I finally opened it one day and started reading. I had some preconceived ideas without really knowing anything about Terence or his subject. I thought it was probably some hippie-dippy thing about machine elves, and it sort of is that, but that’s not all it is. It’s a great narrative and just fascinating—it just captured me. 

Terence postulated that psilocybin mushrooms “played a crucial role in human evolution, giving our remote ancestors a jolt in language and cognition” and “turning Homo erectus into Homo sapiens.” While there’s nothing in the fossil record to support Terence’s “stoned ape theory,” according to anthropologist Laura Weyrich, advances in proteomics and DNA-sequencing technology could potentially indicate whether ancient hominids at least ate psychedelic mushrooms.  

How plausible do you think stoned ape theory is? 

When I first began looking into it, I was like, “Oh, this is so ridiculous.” I was embarrassed to ask these various paleoanthropologists, archaeologists, and researchers about it. I was like, “Oh my God, I can’t ask this, but I have to.” But it turns out that, as a thought experiment, many of them also found it interesting. It’s not something that I think is ultimately really provable. You could find some tangential scientific evidence, but you’re probably never going to get a smoking gun. 

Terence had a lot of theories—some relatively sane-seeming, like the stoned ape theory, and some completely batshit theories that have no basis in science or reason. But I sometimes liken him to Sigmund Freud, or maybe some of the kookier analytic philosophers, where you read it, it sounds kind of good, and then you get to the end and think, “Well, that’s probably 95 percent bullshit, but it still enriches my worldview.” I feel more enriched for having read it. That doesn’t mean it’s true, and I don’t put much credence in it, but it’s fun to entertain, and I do think it enriches the way I think about the human mind and human possibility. 

You also mention how “what drove [you] to write this book was in part a procession of deaths and their aftermaths” you and your wife endured starting in 2019. Would you elaborate on that? 

About a year into writing the book, my son, who was four at the time, fell ill unexpectedly, out of nowhere. He was in and out of the hospital during those days. It really brought us face to face, for the first time as parents, with real suffering and grief, and with being totally out of control when it came to finding a remedy for him. There was just no help to be found anywhere. I started thinking about grief and suffering, and how much of it was around us.  

Then there was this kind of cascade of deaths—just a lot coming at once over the span of a couple of years. It made me wonder what psychedelics, at least on a therapeutic level, potentially have to offer people: some relief.  

Another thing: My father was, weirdly, at the same time, starting to consider psychedelic-assisted therapy to treat his depression and longstanding addiction to alcohol. Maybe a year before, I’d given him Michael Pollan’s book, How to Change Your Mind: What the New Science Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence (2018). Because my dad had been in and out of therapy, rehab, and 12-step programs for many years, I was like, “I don’t know if you’ve heard of this, but I’ve been reading about non-traditional approaches to treating alcohol addiction, including psychedelics.” I don’t think he ever read it, but it did start a conversation between us. 

What surprised you most while researching the book? 

Reading Terence, I hadn’t realized that psilocybin mushrooms were not indigenous to La Chorrera—that they were essentially a foreign import [1], and not something used by the people there, certainly not by shamans. 

Another revelation was what “shamanism” actually looks like in the Colombian Putumayo. Terence talked a lot about this sort of psychedelic shamanism. A lot of people do today, too. But it’s just not at all what it seems to be. The Indigenous perspective on and use of things like ayahuasca, or yagé, and other psychedelic plants—at least in the Putumayo, where Terence and Dennis spent much of their time—is vastly different from how I think they’re generally understood or used in the U.S. These substances were generally not used for healing. Until European contact with Indigenous peoples throughout the Amazon Basin, ayahuasca was mostly used in the hunt—to have luck in finding animals—or sometimes to find lost objects or communicate with family members or other tribe members over long distances. But it was definitely not a therapeutic application. That’s starting to shift a little bit now, though, because of this strange sort of cross-pollination that happens so often in history where it’s now being fed back into an Indigenous context. 

I think I went into the book as something of a Terence fanboy. I cooled on him a bit once I spoke with Colombian anthropologists and ethnobotanists and realized how taken out of context many of his proclamations were on psychedelics and the “shamanic” experience. But, by the end, I sort of warmed to him again because I realized that his ultimate project, I think, was really about human wellness and flourishing. I think that’s what he wanted ultimately, even if he went about it in a strange, myopic way focused almost exclusively on the psychedelic experience through psilocybin mushrooms. That’s where I part ways with him. I think the best place from which to grapple with grief, loss, and suffering is through love, tenderness, and compassion—not through machine elves at the end of history, which was, more or less, Terence’s take. 

I was also interested in your discussion of “diagonalism”—what scholars William Callison and Quinn Slobodian characterize as the social-distress-born alliances between the far left and the far right uniting wellness gurus, anti-vaxxers, and conspiracy theorists. 

I was just reading an article by the American political scientist Francis Fukuyama; he calls it this horseshoe meeting of the minds—this ideological vortex where people with otherwise totally divergent political opinions are meeting in the middle on certain issues. The far left, the Make America Healthy Again movement, the Multidisciplinary Association for Psychedelic Studies—even just the friendship between [MAPS founder] Rick Doblin and former Texas Governor Rick Perry [co-founder of the nonprofit Americans for Ibogaine], who had one of the most conservative legislative agendas in recent memory. That friendship seems genuine—and maybe even necessary to advance these drugs beyond their current legal status. 

In 2023, MAPS hosted the world’s largest psychedelic conference, which you describe as laden with snake oil pseudoscience and lacking in diversity, equity, and inclusion. Almost a year later, an FDA advisory panel rejected MDMA-assisted therapy for PTSD, citing safety concerns and questions about data validity. Critics alleged that MAPS’ drug development arm failed to disclose data showing sexual misconduct by therapists and increased suicidality among trial participants. A former MAPS volunteer called MAPS an exploitative and abusive cult that functions “more like a religious movement than a scientific organization.” Similar concerns emerged at The Johns Hopkins Center for Psychedelic and Consciousness Research. An ethics complaint accused founding director Roland Griffiths of “acting as a ‘spiritual leader’ rather than a scientist” and influencing participant outcomes through religious symbolism. 

Additionally, a Columbia psychiatrist reviewing the field noted a relatively high rate of  irritability, anxiety, insomnia, and other adverse events, and called for more “rigorous assessment” of psilocybin-assisted therapy.  

How do we balance the potential of psychedelics to promote empathy and well-being with the risks? 

Terence said a lot of completely bullshit things about psychedelics—even dangerous things at times. You see that in the movement today, where a lot of these wild, unsubstantiated claims are being made about drugs that, yes, have real healing potential for many people, but for others, such as my father, don’t work at all—and arguably cause more harm than good. 

We should be sane and sober about this. We can champion these drugs while still having a lucid conversation about their efficacy, limitations, and safety concerns. 

[1] One of my favorite passages from the book is “Darkly gilled, with distinctive golden halos and pink veils around slender stems the color of bruised flesh, they were easily identifiable as Psilocybe cubensis… Likely brought to the Americas by Spanish missionaries via the dung of zebu cattle—rangy saltwhite beasts with enormous, scythe-like horns—Psilocybe did especially well in the humid pastures of La Chorrera. Amazonian shamans, who knew more about psychoactive plants than anyone on earth, had no use for these foreign imports. To Terence, however, they were living manifestations of the divine” (p. xx). 

A Short, Strange Trip: An Untold Story of Magic Mushrooms, Madness, and a Search for the Meaning of Life in the Amazon 
John O’Connor 
New York: Sourcebooks 
2026 

Modern medicine’s emphasis on extending the human lifespan has, in some cases, transformed dying, once a communal and spiritual event, into a cascade of arduous procedures. Deftly synthesizing the wisdom of many experts with his own insights and experiences, Palmer offers compelling, accessible, and refreshingly honest advice on how to shape our lives and legacies so that we are better prepared to die as we see fit—highlighting agency in aging in the face of ageist norms. 

Just last week, New York Governor Kathy Hochul announced that the state will join 11 others and Washington, D.C., in legalizing medical aid in dying (MAID), or when physicians prescribe a lethal dose of medications to patients with fewer than six months to live. 

“New York has long been a beacon of freedom,” Hochul said, “and now it is time we extend that freedom to terminally ill New Yorkers who want the right to die comfortably and on their own terms.” 

The governor’s rhetoric emphasizes a collective cognitive dissonance: As physician (and fellow politician) Dan Morhaim observes, “our culture celebrates personal autonomy,” but when it comes to death and dying, “we collectively abdicate” that value. 

Citing Morhaim and others, Palmer provides valuable context for our relationship with mortality (along with additional information about MAID). During the nineteenth and early twentieth centuries, the average death was relatively quick and happened at home, with little involvement from healthcare providers and medical technology. Today, dying is protracted and tends to take place in hospitals or nursing homes; healthcare providers and medical technology are highly involved; and life can be prolonged with organ transplants, chemotherapy, and more. 

“There is a significant difference between dying peacefully in your bed at home and dying yoked to tubes and machines in an ICU,” Palmer writes, “receiving futile care that only prolongs the dying process for perhaps a few days while providing a horrendous quality of life.” 

Drawing on surgeon Atul Gawande’s [1] work, Palmer argues that, at best, physicians are uneducated about aging and dying and what might matter to patients approaching the end of their lives. At worst, they are financially motivated to perform aggressive interventions that may do more harm than good.  

According to numerous studies, frail patients do poorly in hospitals, and Palmer points out that doctors nearing death tend to eschew the very treatments they give to their older patients, such as surgeries and radiation. 

“I don’t want my last conscious thought to be of doctors stabbing needles into my veins, my ribs breaking from chest compressions, and a large-bore tube thrust into my throat and lungs,” the end-of-life activist writes. “When a patient is young and robust, such curative measures may make good sense despite their violence, but not for an old, debilitated, frail patient.” 

But we have choices: “where to die, how much treatment to have, and how to spend the limited time we have left.” 

“While, in a real sense, no death is ever ‘good,’” Palmer underscores, “planning and preparation can make death less awful and painful.” 

Legislation to make MAID available to the terminally ill is one step in that direction. However, critics argue that MAID may endanger the elderly and disabled, who might feel pressured to end their lives out of fear of causing hardship to their families. Opponents also contend that such policies reinforce the toxic notion that a life with a disability or chronic illness is not worth living. Also, some individuals may seek MAID due to high treatment costs, but MAID should not substitute for accessible care and support. 

Racial inequities in healthcare are also relevant; Black people might opt for MAID because they are more likely to receive inadequate pain management due to stereotypes that they are drug-seeking or pain-tolerant.[2] Palmer could have engaged more fully with these valid concerns. Fortunately, the Medical Aid in Dying Act in New York has a number of guardrails meant to ensure the patient’s decision is informed and voluntary, including a conflict-of-interest prohibition and a mandatory mental health evaluation. 

Well before we are terminally ill, we need to be having routine conversations about dying with our loved ones and physicians. To that end, Palmer endorses The Conversation Project. He also suggests creating an advance directive, or a legal document outlining your healthcare wishes, and choosing a healthcare proxy—not necessarily your closest relative—when you’re young or in good health. One way to think about your healthcare wishes is to complete the sentence “I would want to live as long as I could still…”, as recommended by physician Eleanor Tanno. Another is to consider an “exit strategy,” or an illness for which you would decline treatment.[3] 

Some other tips from Palmer for a “good” death: 

• Write a personal mission statement; letters of gratitude to loved ones; and legacy letters, also known as ethical wills, that capture your essence, beliefs, and stories to pass on to future generations. 

• Make a folder containing everything your children must handle when you die. 

• Join a “village,” or “virtual retirement community.” 

The author also illuminates the benefits and limitations of palliative and hospice care, delineates various eco-friendly alternatives to embalming (reader: as of writing this, I’d like to be affordably composted), and presents ideas for making funeral and memorial services more substantive—and even fun. 

Achieving a Good Death is a touch dogmatic, but Palmer demonstrates in the book’s rich appendices that he practices what he preaches. In a letter to his family about his own end-of-life wishes, he shares the pain of witnessing his mother’s final years in a nursing home: “I want to prevent what happened to her from happening to me.” 

“If my mental function is seriously compromised with little chance for full recovery, please seek opportunities to encourage death’s approach… Are my kidneys faltering? Let them,” he writes, giving new meaning to author Mel Robbins’ self-help concept. 

The book’s main flaw—one the author himself acknowledges—is that it is primarily aimed at those with friends and families. Readers without such connections may feel less comforted than grimly recognized by Palmer’s planned memorial service playlist featuring the Beatles’ “Eleanor Rigby.” 

Ultimately, Achieving a Good Death is a stimulating must-read for mortals that will leave you equipped for a more peaceful, dignified, and meaningful end. 

Achieving a Good Death: A Practical Guide to the End of Life
Chris Palmer
Rowman & Littlefield, 2024

[1] Gawande, Atul. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, 2014. 
[2] Substance Abuse and Mental Health Services Administration. The Opioid Crisis and the Black/African American Population: An Urgent Issue. Publication No. PEP20-05-02-001, Department of Health and Human Services, Office of Behavioral Health Equity, 17 Mar. 2020, samhsa.gov/sites/default/files/meeting/documents/csap-nac-presentation-03172020.pdf.  
[3] Harrington, Samuel. At Peace: Choosing a Good Death After a Long Life. Hatchette, 2018. 

Web image by Medhum.org.

Change Not Charity traces the grassroots movement leading to the passage in 1990 of the Americans with Disabilities Act (ADA), the law that mandates accessibility for the disabled.  

People with disabilities have a long history of being isolated, excluded socially as well as physically from facilities that were not accessible. Beginning in the late 1960’s, Jerry Lewis’ Labor Day Telethons were watched by nearly half of the country and raised millions of dollars towards finding a cure for muscular dystrophy. But despite its good intentions, by arousing the audience’s pity of the disabled to attract donations, the telethons also heightened the distance between “normal” people and people with disabilities. 

Children were among those whose disabilities affected them in harmful ways. In one of the many interviews, Cynthia Jones describes how, at the age of five and a half, she was selected as a poster child for the March of Dimes because she was “blonde, blue-eyed, and braced.” When her teacher passed around a flyer to promote polio vaccines in class, she was horrified to see a picture of two children, one labeled “This”, the other “Not This.” Cynthia was the “Not This.” At that moment, she realized that no one wanted to be like her. In fact, many young children with disabilities were institutionalized and kept out of the public eye. 

In February 1972, reporter Geraldo Rivera’s broadcast from inside Willowbrook State School, an institution for disabled children on Staten Island, shocked the nation and helped spark the disability rights movement. At the same time, a group of disabled college students in Berkeley, with a donation from the Rotary Club, formed the Center for Independent Living (CIL), offering services which included applying for government assistance, counseling and transportation. CIL drew disabled people from throughout the country who wanted to live in a place where they could find support and practical help. Judy Heumann, a disability rights advocate who had successfully sued the NYC Board of Education when she was denied a teaching position, became the Center’s Deputy Director.  

 In 1973, an update to the Federal Rehabilitation Act was enacted to help veterans. At the end of the document there was a 46-word clause, Section 504, barring discrimination against the disabled in federally funded institutions. People with disabilities took note, but the new regulations languished unsigned until demonstrators occupied the Federal Building in San Francisco and protested in Washington DC. The demonstrations drew national attention and led to Health, Education and Welfare Secretary Joseph Califano signing the regulation into law. Years later, the passage of the Americans with Disabilities Act expanded the earlier regulation to include private institutions and businesses.  

The story of the disability rights movement has elements that resonate today. Letter-writing campaigns and connections forged with members of Congress and the Executive Branch helped garner support for pending legislation and advance the movement’s agenda. Justin Dart, Vice Chair of the National Council of the Handicapped, crisscrossed the country holding town meetings to find out about discrimination in local communities. He issued his findings in a report titled “Toward Independence,” which served as a roadmap for disability legislation. 

The Americans with Disabilities Act (ADA) was initially introduced in 1988, at which time opponents called it the bankruptcy bill because the cost of creating accessible spaces was considered too exorbitant. In Washington DC, people parked their wheelchairs and maneuvered up the steps to the US Capitol into the Rotunda where over 100 protesters were arrested. ADA was finally passed two years later in 1990 with the support of President George H.W. Bush.   

The disability rights movement led to significant change in large part because people showed up repeatedly over the years in multiple venues across the country to ensure their voices were heard. And while much has been achieved, the documentary ends with a reminder that there is still more work needed, citing that two out of three adults with disabilities are not in the work force.  

Change Not Charity, part of the PBS’s American Experience series, is a comprehensive overview of the pivotal events leading up to the passage of ADA, using archival footage of demonstrations and interviews with participants, Congressmen, and legal advocates. The documentary is directed by Jim LeBrecht, who won the Academy Award for his previous documentary Crip Camp, a more personal documentary, with its focus on some of the key people in the movement beginning with their experiences at the sleepaway camp. Both documentaries provide insight into the struggles faced by the disabled and the efforts to advance disability rights.  

Change Not Charity Film Trailer

CHANGE NOT CHARITY  

Director: Jim LeBrecht 
Narrator: Peter Dinklage
A STEWARD/GAZIT PRODUCTIONS FILM FOR AMERICAN EXPERIENCE 2025 
RT 53 minutes 

Crip Camp: A Disability Revolution 

Carol Schilling Jan 3, 2025

A powerful film celebrating disability rights, resilience, and community, revealing untold struggles and triumphs that demand greater recognition and action

A child of unconventional, British-born parents, raised in the bucolic countryside of Vancouver Island, British Columbia, her relentless pursuit of science began in a love of animals, carrying her through two Canadian universities to a University of Chicago PhD in pharmacology and tenuous postdoctoral positions investigating the pituitaries of whales and armadillos. The research sent her to sea with grudging whalers and to inhospitable deserts by night. She married fellow pharmacologist Ellis Kelsey, followed him for his work, and became a mother of two daughters. Lack of paid opportunities for a woman scientist sent her commuting to medical school in Chicago where she obtained an MD degree in 1950 at age 36, while her husband kept the home and family together. She was working as a G.P. locum tenens and as an editor for JAMA. After a stint in South Dakota, the family relocated to Washington in 1960 where she began her lengthy career in the FDA, rising through the ranks to positions of prominence. Not long after the move, her stance on thalidomide earned her the Distinguished Federal Service Award of 1962, presented by President J​ohn​​ ​F. Kennedy. It also brought widespread admiration, mountains of fan mail, several other honours, and the resentment of male colleagues. Ellis died suddenly in 1966, but she kept working into her 90s, taking on the public-health challenges of other notorious “remedies” seeking approval. Kelsey’s fame eventually subsided but rose again in 2015 with late honours and her death at 101 years of age.  

Cheryl Krasnick Warsh​,​ who lives and works on Kelsey’s parental home of Vancouver Island, has given us a wonderful biography. With many previous publications in gender history and the history of alcohol and other drugs, Warsh is well placed to handle this vast and ​multifaceted​​ ​topic, sensitive to the misogyny of Kelsey’s century and with expertise on the nature and fortunes of licit and illicit substances.  

In twenty short chapters, Warsh divides this long life into three ​​segments– before​,​ during, and after thalidomide– and identifies her subject in three different ways. She describes “Frankie’s” early years in simple prose, reminiscent perhaps of Gertrude Stein or Emily Carr. Quirks and disputes in the Oldham home become evidence of a high-functioning, dysfunctional family. As a young woman, “Frances Oldham” delved into science studies at what would become University of Victoria and McG​i​ll in Montreal but made the ​trip ​back home every summer. She slipped into the laboratory of distinguished pharmacologist E.M.K. Geiling at the University of Chicago, when he believed the applicant was male. Despite his initial skepticism, Geiling fostered her career and supervised her doctorate. In 1937, she worked on the lethal side-effects of elixir sulfanilamide and determined that the solvent was responsible. At that time, she also became interested in researching harmful effects of pharmaceuticals on pregnancy and explored the legal protections (or lack thereof) for their consumers. With Geiling and Ellis Kelsey, Frances Oldham wrote a pharmacology textbook, one of the first in America, that went into four editions. These experiences, her medical degree and the work with JAMA were excellent preparations for her concerns about thalidomide. Now she was “Dr Kelsey,” one of two in the same home. 

Kelsey first doubted the value of this new drug when the side effect of peripheral nerve damage seemed to have been excluded from the incomplete applications and their inadequate trials. Further delay allowed for the early reports of fetal damage (coming from newspapers rather than manufacturers) to add to the concerns. While she succeeded in blocking the approval of thalidomide, it had managed to make its way into the US anyway, in the form of free samples given to practitioners sloppily engaged as researchers in shoddy “clinical trials.” Warsh carefully tracks the resultant American harm through reports of at least 56 damaged or dead infants documented in a survey of city health officers in 1962—probably merely the tip of an iceberg. She also probed the tragedy’s impact on attitudes to abortion, respect for the disabled, and increasing caution over medications. 

Beyond the thalidomide story, this biography provides a good sense of the evolving field of pharmacology and interesting chapters on the thorny history of several famous drugs–Krebiozen, laetrile, dimethyl sulfoxide (DMSO), artificial sweeteners, and diethylstilbestrol (DES)–and the harmful impact of Xrays on the pregnant belly. Kelsey found support from other women scientists, in particular Barbara Moulton and Helen Taussig​,​ who became her friends. 

Warsh has tapped into a wealth of sources—extending well beyond the numerous publications, FDA documents, and newspaper reports. She interviewed Kelsey, aged 99, in 2014 and spoke with her colleagues, daughters and other family members. She made excellent use of the personal papers, sorted by the pharmacologist herself with the help of FDA historian John Swann; they contain more than 78,000 items and occupy more than 100 feet of shelving in the Library of Congress. Moreover, Warsh follows the court decisions, changing legislation and rules governing not only drug approvals but ​also ​the ordering of female lives in terms of employment and reproductive freedoms. Yet she handles all this information with a deft light touch, accessible language and playful humour.  

A great read about a great scientist and a fascinating era in biomedical science. 

Frances Oldham Kelsey, the FDA, and the Battle Against Thalidomide
Warsh, Cheryl Krasnick
Oxford University Press. 
New York, 2024-03-15

Photos of Frances Oldham Kelsey from Wikicommons

Cheryl Krasnick Warsh Interviewed at Library of Congress

​​​Public reactions to t​he fatal shooting of a health care insurance company executive in front of a hotel in Midtown Manhattan on December 4, 2024, revealed a deep, seething antipathy across the country directed at the health insurance industry​, an antipathy that has existed for at least thirty years. ​Its ​persistence brings to mind four movies​: As Good as It Gets, Critical Care, and Rainmaker​, released in 1997 and ​John Q ​in 2002, ​each depicting scenarios where rage against the healthcare system play a key role. ​​​​​​ 

​As creators in the arts often do, the makers of these movies were picking up on trends and signals before they were appreciated throughout society, and envisioning how they might play out in real life​ 

How it starts 

“Fucking HMO bastards, pieces of shit…sorry.”  

This is how Carol reacts to the pediatrician who tells her the HMO should have covered certain tests for her suffering, asthmatic son. “Actually, I think that’s their technical name,” is the doctor’s response. This is from a scene in the 1997 movie, As Good as It Gets, directed by James L. Brooks. The movie won major awards from the Academy of Motion Picture Arts, Hollywood Foreign Press Association, and Screen Actors Guild​. It​ also ​drew ​attention from the mainstream press for revealing a building rage about to boil over.  

Ruthe Stein, from the San Francisco Chronicle, sensing the importance of the scene, wrote on December 23, 1997, 

As Good as It Gets may be the first movie to take on HMOs…Brooks strikes a chord when he has Carol use four-letter words to describe the HMO that has mangled her son’s case. The audience hoots and claps its approval.  

​​Then- ​President Clinton pointed to the scene as representative of real life while speaking at an event involving the Health Care Bill of Rights. 

Movies Raging Against the Managed Care Machine 

As Good as It Gets (1997, director – James L. Brooks). The movie mostly concerns the relationship between an author with obsessive compulsive disorder and a waitress whom the author depends on for a routine set of practices around his breakfasts. A side story involves the waitress’ young son who has severe asthma. At one point he needed certain tests done, but his health plan refused coverage. This situation led to the scene in which the boy’s mother reacted to this news in a way that attracted widespread public attention. The scene lasted for less than a minute, yet its effect on the image of managed care activities continued for years.  

The Rainmaker (1997, director – Francis Ford Coppola). The movie plot involves a scam operation posing as a health insurance company. A young lawyer, fresh from passing the bar exam, takes on the company through the case of a plaintiff. The plaintiff is a young man who has a form of leukemia that can be successfully treated but will kill him otherwise. The insurance company denies coverage for the needed treatment and denies seven subsequent appeals. The lawyer eventually ascertains that the company denies all claims as a matter of course. Although a judgment is made against it, the company declares bankruptcy and goes out of business, thereby vitiating the settlement awarded. The patient dies. The movie is perhaps best-known for a line said by the lawyer’s assistant which fueled the growing public sentiment at the time: “There’s nothing more thrilling than nailing an insurance company.”  

Critical Care (1997, director – Sidney Lumet). The setting for the movie is mostly in a hospital critical care unit. As in As Good as It Gets, a particular scene feeds the fury to come about managed care. A resident physician taking care of a terminal patient who has been clear about not wanting to continue treatments that only prolong suffering, argues with a senior physician and mentor about the advisability of putting the patient through yet more futile interventions. With his guard down from a combined state of inebriation and dementia, the senior physician tells the resident that the patient is fully insured and is thus a source of guaranteed revenue. He goes on to explain the economics (and immorality) driving these decisions.  

[With HMOs] we get paid not to perform medical procedures. It’s a little like when the government pays the farmers not to grow crops. However, with insurance we get paid to perform medical procedures. Do you understand the difference?  

On that basis, and that basis alone, he demands that the resident proceed full speed ahead. 

With this scene, the moviemaker is going further than pointing to just the managed care organizations as the source of rage, but also to the health care providers who can spot opportunities for self-dealing. Viewers already sensitized to managed care activities could become even more worried, incensed, or nihilistic about the situation.  

John Q (2002, director – Nick Cassavetes). About the same time John Q. Archibald’s full-time factory job is cut in half, along with his health insurance, his son collapses from heart failure while playing in a Little League baseball game. After a cardiologist tells John about his son’s need for a heart transplant and the financial requirements which he can’t meet, a nurse he asked why his heart condition had not been detected before tells them, “HMOs pay the doctors not to test. That’s how they keep costs down.” This comes up again when John asks the cardiologist how it could be that his son’s condition had never been discovered. An accompanying intern chimes in saying,  

HMOs pay their doctors not to test. That’s their way of keeping costs down. Let’s say Mike did need additional testing and insurance says they won’t cover them. The doctor keeps his mouth shut and, come Christmas, the HMO sends the doctor a fat-ass bonus check. 

The surgeon qualifies the intern’s assertion as possible but unlikely.  

Try as he might, John Q cannot come up with the $75,000 down payment. The hospital administrator will not put his son on the transplant list, and he is released to be taken home where he will die. John pulls out a gun and takes the emergency room hostage. No one is killed, no one is shot, and a solution is found in the end. However, the movie raised the level of rage to one that produced the possibility of gun violence.  

How It Ends? 

Nearly thirty years have passed since these first movies depicted the rage that came in response to aggressive measures directed at managing health care costs, especially when they involved restrictions on certain products and services health care providers ordered and patients expected. Did these movies get it right? In large measure, they did. Management activities got more aggressive over the years and indeed many of those portrayed that were particularly egregious became a reality for some. As a medical affairs executive in a large pharmacy benefit company before, during, and after these movies were released, I witnessed (and fought against) the scenarios they depict as well as many others as bad or worse (with the exception of gun violence).  

Where the movies helped to identify the problems early and possibly stoked the existing rage by bringing attention to them, they, along with professional health organizations, news media, and consumer advocates, pushed legislatures and regulatory agencies into creating laws and rules concerning how these activities are managed. These measures helped some, but media stories, books, and movies highlighting the problems appear regularly, keeping the rage alive, and maybe even intensifying it to the level anticipated in John Q. Maybe, even, to the level that played out on an early morning Manhattan street in December 2024.  

Podcast: The Clinic & The Person

Film Trailers

As Good as It Gets Trailer

John Q Trailer

The Rainmaker Trailer

Critical Care Trailer

Web photo by Christian Harb 

The phenomenon sometimes referred to as “baby blues,” a mild transient state affecting as many as 80% of new mothers, had been recognized early on. In his influential 1946 book on baby care Dr. Benjamin Spock advised that one could snap out of it by just going “to a movie, or to the beauty parlor, or [getting] yourself a new hat or dress” (p. 29). If a new dress did not do the trick, the implication in that era was that you were a defective woman. In the 1962 edition, Spock still repeated the same advice verbatim. The notion there could be a persistent mood disorder requiring treatment required far longer to catch on. In her book, Moran elucidates some of the factors that rendered it difficult to accept the existence of postpartum depression and explain why persistent advocacy was necessary.  

One such factor involved organized psychiatry. While early editions of the DSM (the Diagnostic and Statistical Manual of Mental Disorders) had proposed psychodynamic causes for mental illnesses, in an attempt to be neutral about their origins the DSM-III did not include postpartum disorders as discrete entities. One implication of this was that there was no code to use to get health insurance to reimburse for medical care. The result, according to James Alexander Hamilton, a psychiatrist who had written the first modern monograph on postpartum mental illness, was that “many thousands of very sick women [were] very badly treated” (p. 67). It took several editions of the DSM until this was addressed. And even in DSM-V, postpartum depression would still be coded as Major Depressive Disorder with peripartum onset.  

Eventually the idea there was something more serious than” baby blues” yet still relatively common took root in the public consciousness. One began to hear about it on television talk shows. Yet these appearances often featured extreme cases such as that of Andrea Yates who had drowned her five children: “Tragedy and insanity got ratings. This still allowed advocates a chance to raise awareness on a massive national platform. But it also made postpartum depression frightening and unclear” (p. 166). It took celebrities such as Brooke Shields to come out about their experiences to change the national conversation. After publishing a memoir about her postpartum depression, in 2005 the actress went on the Today Show where she was criticized by Tom Cruise for using antidepressants. When the public rallied behind Shields, this proved to be a turning point for the movement. 

When national bipartisan legislation was proposed to increase awareness and to fund research for postpartum depression, the issue became a political football. Anti-abortion activists coined a brand new “disorder” they called “post-abortion syndrome” and would not consider supporting one without the other. It was not until the passage of the Affordable Care Act that the MOTHERS act went through, and not even then without the concession to abortion politics.  

If Moran’s book breezes through the science behind postpartum depression somewhat rapidly, its chronicle of an important advocacy movement for women’s health makes it worthwhile, and its extensive use of oral histories within the context of the author’s own history ensures it is an interesting read.  

Blue
Rachel Louise Moran
University of Chicago Press, 2024, 304 pages

Web image by Alexander Grey 

See https://www.postpartum.net/ for information about Postpartum Support International, one of the advocacy groups profiled in Blue.  

Located near Woodstock, geographically and culturally, Jened offered a space free from the discrimination the summer residents encountered elsewhere. Campers engaged in uninhibited physical activities, uncensored storytelling, self-governance, mutual caretaking, real friendships, irreverent insider humor, romance, and fun. One powerful, sobering scene allows viewers to overhear campers with diverse disabilities share common experiences: being disrespected or ignored at school, overly protected at home, isolated everywhere. Another tracks the campers’ hilarity and pride over an outbreak of “crabs.” One camper declares his counselor’s demonstration of how to kiss, “Best physical therapy ever!”  

The second and longer part of the film follows several former campers into their adult lives. They become parents, spouses, professionals, and disability rights activists at a crucial historic moment for disability legislation. Both parts of the film propose that the liberty and solidarity experienced at Jened emboldened several of the campers to seek opportunity and equality in the world beyond their camp. 

While former camper Jim Lebrecht narrates the film, Judy Huemann—who died in 2023—is its political and moral center. A wheelchair user, Heumann rose from Jened camper to counselor. Campers revered her for successfully suing the New York City Department of Education for the right to teach. When she and several former campers unexpectedly reunited in Berkeley, California, they participated in the Independent Living Movement that famously started there. An astute leader, Heumann inspired an astonishing 25-day sit-in at the Department of Health, Education and Welfare (HEW) offices in San Francisco’s Federal Office Building in 1977.  She and her disabled colleagues risked their health and their lives—they slept on the floor and improvised medical necessities—to convince HEW to enforce the anti-discrimination section of the 1973 Rehabilitation Act: Section 504. Heumann’s uncompromising standoff with the HEW representative is unforgettable. As is her daily urging for the occupiers to hold fast. Regular deliveries of food, supplies, and solidarity from the Black Panthers and other marginalized groups fueled the protesters’ determinism and ultimate success. 

In other archival footage, Heumann, demanding accessible taxies, leads demonstrators to gridlock traffic in New York City intersections. Still other protestors abandon their wheelchairs and pull themselves up the steps of the U.S. Capitol to insist on disability civil rights. Recently filmed interviews with several former campers affirm that, despite the work toward disability justice that remains, they live fuller, more vibrant lives as a result of their camp experiences and the legislation they demanded.  

Crip Camp is an indispensable film because it’s told from the rarely seen perspective of disabled teenagers . The Jened campers’ irrepressible personalities, candor, and accomplishments demolish stereotypes about disability. It’s simultaneously painful to confront the inhospitable world they had to navigate and still do. The film’s co-directors, Jim LeBrecht and Nicole Newnhan, prompt us to ask why histories of the civil rights projects of the’ 60s to ‘70s have largely ignored the struggles and successes of disability activists. Yet as Crip Camp raises awareness of the “nothing about us without us” campaigns for disability rights, it also makes me restless for more documentaries. Without doubt, we have more to learn about the history and politics of the passage—and enforcement—of laws through the 1990 Americans with Disabilities Act and its 2008 Amendment.

Crip Camp: A Disability Revolution 
Directed by Jim LeBrecht and Nicole Newnhan 
Higher Ground Productions: 2020, RT: 104 minutes 

For more information about Crip Camp and its Impact Campaign, please visit https://cripcamp.com/