The book has a Biblical quality. The story unfolds in present day Australia, but the atmosphere is ancient and premodern. Wood incorporates a frightening plague of mice who infiltrate every element of the women’s home and terrify the nuns. Also, a woman who knew the narrator in high school and who was the victim of a horrifying adolescent gang attack surfaces unexpectedly. She is now a famous nun charged with returning the bones of a murdered sister to the community for burial. Her sudden appearance unsettles everyone. It all sounds like “A Children’s Bible” by Lydia Millet. But it is unmistakably a tale of adults living today in a world that we recognize. These mythical events play out in the setting of grounded people caught up in regular everyday challenges and missteps – miscommunication between couples, adolescent conflicts, failing to realize unintended slights, evenings spent comforting ill friends. The narrator is surrounded by nuns, neighbors, and friends whose activities and conversation are routine. Against this backdrop, her voice sounds timeless and prophetic.

This is an extraordinary book. It is not an easy read but a rewarding one that would be meaningful to any doctor trying to become a better care provider. For example, there is an intense effort underway to incorporate quantitative rigor into medical practice. With that as the point of departure, absent evidence to support one treatment over another, it might seem that restraint would be the best path for a doctor to follow. But illness calls for action. And if doctors are honest, they will acknowledge that errors are made in the course of action that they choose. Patients can be injured and their deepest hopes may be ignored. There is plenty of room for misunderstanding and hurt in both directions — patient to doctor, doctor to patient. How does a thoughtful, mature doctor manage this inescapable burden?

Wood’s novel speaks to doctors who have to address mistakes and conflicts every day in their practice. The setting is religious, but the scope is human. She does not offer an evidence-based one-size-fits-all solution to the chaos of life. The interdependency of people and the connectedness of people and nature are central features of the book and key to its emotional integrity. With that backdrop, she has created a narrative that sensitively details the burden of pain and despair when people cannot get past these challenges. This is balanced by the serenity that is achieved when people honestly confront their mistakes and receive forgiveness for misdeeds. The individual stories in the novel vary and the outcomes differ. The endings are often imperfect and reflect our human limitations. But there are moments of deep connection between characters, a willingness to accept how life played out. The feelings that are created are real and genuine. And they speak to doctors.

This is the season in the Jewish annual calendar when one is commanded to take stock of one’s life and conduct. The underlying theme is atonement, to frankly acknowledge personal flaws and misdeeds and seek forgiveness from that one has hurt. The religious framework is an opportunity to address mistakes of the past and map a path to a healthier more moral future. Ideally, it builds on true memory to create a new future history for our personhood. I would recommend Wood’s book as a human companion text to traditional Jewish prayer books. It is a challenging read, unsettling in its directness, and implacable in its honesty. It is an irreplaceable guide to genuine forgiveness, acceptance, and compassion, whether or not you are a doctor, regardless of your faith.

Stone Yard Devotional
Charlotte Wood 
Riverhead Books, 2023, 293 pp 

Web image generated using the original book cover.

Despite Virginia Woolf’s (12) famous proclamation that a “poverty of the language” exists in the description of illness, the most common form of pathographies is likely literature. Woolf’s essay On Being Ill argues that illness, compared to topics such as grief and love, remains rarely written into narratives due to the vocabulary itself. Yet, Carel’s work focuses on a more acute limitation. Language in books inherently offers limited bearing on temporality and pacing. While it is true that skilled authors can decide the pace of paragraphs, quickening tension with staccato and parataxis, the reader is ultimately given control regardless. As Roland Barthes (11) writes in The Pleasure of Text, “the author cannot predict tmesis: he cannot choose to write what will not be read.” In other words, the writer’s intentions matter little if a reader decides to skim over what they deem to be unimportant. Thus, the act of writing itself involves a willful relinquishment to the reader, and this act of surrender betrays a core tenet of the illness-experience: removal from control, particularly over time and space.

Video games complicate this dynamic, since some strip the very control Barthes describes back out of the player’s hands. Perhaps no game better exemplifies this removal of player control, especially over time, to depict illness than Before Your Eyes, released in 2021 by GoodbyeWorld Games. Before Your Eyes is not a typical video game. At no point does the player use their hands to control the game. Rather, the opening minutes require the player to set up an eye-tracking system, which lends itself to a simple conceit: with each blink in real life, once a metronome-object appears, time passes rapidly within the video game.

The first half of the game acts as a type of memory play. The main character, Benjamin, whose eyes the player inhabits, awaits judgment after death and must recount their life story to a mythical Ferryman to continue to the afterlife. The scenes begin playing out. Blink – Benjamin, as a baby, playing with rubber ducks. The scene plays out, then a metronome begins ticking down. Blink – watching parents argue about money. Blink – a piano recital. Blink – nervousness about talking to a crush. Evoking how memories work in real-life, each of these moments has a fleeting quality to them, as these scenes can only last if the player does not blink. Life goes by in a blink of an eye, literally.

While this perspective on memory alone makes Before Your Eyes an intriguing musing on memory, the second half of the game recontextualizes what comes before it in the context of medical humanities. As the scenes continue to play out, eventually Benjamin becomes a highly successful musician and artist, garnering worldwide acclaim. Yet, the story increasingly becomes fantastical, until it’s revealed that the story up to this point has been false. Rather, Benjamin died at 12 years old due to an unspecified terminal illness. The game plays out again; this time, the scenes are of Benjamin confined to his hospital bed. Blink – a growing illness. Blink – his parents visiting him at the hospital. Blink – dreaming of playing the piano. Blink – a fading interaction. In this second half, the scenes become ever more fleeting as the metronome signaling the scene is ready to pass appears more rapidly, triggering in the player a desire to avoid blinking. Often, before a moment can conclude, one blinks; time progresses, closer to death.

Before Your Eyes demonstrates the ability of other mediums, particularly video games, to use interactivity to disrupt typical temporality. This technique is not unique to Before Your Eyes by any means; the works of Samuel Beckett employ a similar technique of stripping audience control to simulate the constricted present Carel describes. For example, Beckett’s Not I (1972) features a disembodied mouth that delivers a fragmented monologue about past trauma at a pace too fast for an audience to fully process, let alone control. In video games, Red Dead Redemption 2’s protagonist, Arthur Morgan, develops tuberculosis over the game’s final chapters, which alters gameplay mechanics, including reducing stamina. As Marshall McLuhan famously argued, a medium’s structure shapes the way it delivers experience, independent of its content. Removing description of illness in favor of depicting its phenomenology, whether that is through Beckett’s compression of time or Red Dead Redemption 2’s diminishing of gameplay abilities, aims to cause the audience to experience illness. Before Your Eyes heightens both of these experiences, for time and space are tied to the player’s physical body, as occurs in sickness. In binding the passage of time to the player’s own involuntary blinking, the player’s body becomes a mechanism of failure. Thus, the player is made to inhabit Carel’s claim that illness is lived from within the body rather than observed from outside it. While literature can recapitulate the experience of symptoms, it cannot impose the conditions of it. Before Your Eyes suggests that the truest representation of illness may not be a representation at all, but an imposition of the phenomenological conditions of illness.

References:

Barthes, Roland. The Pleasure of the Text. Macmillan, 1975.

Carel, Havi. Phenomenology of Illness. Oxford University Press, 2016. Silverchair,
https://doi.org/10.1093/acprof:oso/9780199669653.001.0001.

McLuhan, Marshall. Understanding Media: The Extensions of Man. MIT press, 1994. Google Scholar,
https://scholar.google.com/scholar?cluster=4603169387763961023&hl=en&oi=scholarr.

Woolf, Virginia. “On Being Ill.” Family Business Review, vol. 6, no. 2, June 1993, pp. 199–201. SAGE Journals,
https://doi.org/10.1111/j.1741-6248.1993.00199.x.

Web image by medhum.org

Zauner was 25 when her mother was diagnosed with an aggressive, late-stage, mid-life cancer. Zauner was a rebellious child, resentful of Umma’s version of tough love. Growing up the lone Asian student in her Oregon community, she felt both othered at school and an outsider among her mother’s Seoul relatives when she visited them each summer. Just as she was beginning to appreciate her Korean heritage and understand her mother’s love, she learned about Umma’s diagnosis.   

The first half of the memoir exuberantly brings to life scenes from Zauner’s childhood and her brief post-college years as a musician in New York City. Surprisingly, without hesitation, she paused her makeshift career and flew west to care intensively for her mother. Attempting to heroically save Umma, Zauner zealously learned to prepare the native foods they shared. “I would radiate joy and positivity,” Zauner pledged. “I would learn to cook for her—all the things she loved to eat, and I would single-handedly keep her from withering away” (69). Her optimistic culinary efforts produce a poetry of exacting descriptions of the flavors and textures and preparation of those foods. It’s grimly ironic that the chemotherapy her mother endured wiped out her ability to taste or digest Zauner’s loving offerings of health.  

The second half turns from living with Umma to living without her. Wishing to sustain her bond with her mother as Zauner grieved, she continued preparing her Korean family’s recipes. Walking down H Mart’s redolent aisles released “waves” of sorrow that mark the enduring ebb and flow of her grief. Unsuccessful with conventional therapy, she found cooking the best form of self-care: “Every dish I cooked exhumed a memory. Every scent and taste brought me back for a moment to an unravaged home. Knife-cut noodles in chicken broth took me back to lunch at Myeong Dong Gyoja . . . The kalguksu so dense from the rich beef stock and starchy noodles it was nearly gelatinous. My mother ordering more and more refills of their famously garlic-heavy kimchi” (212-213). An image of abundance in the midst of loss.

Zauner’s detailed descriptions of cooking and consuming invite readers to her table, reminding us—as previous celebrated writers have—of the power of the senses to evoke memory and the power of food to strengthen human bonds. Food also powers Zauner’s self-understanding and the unexpected transformational love for her mother: “The culture we shared was active, effervescent in my gut and in my genes, and I had to seize it, foster it so it did not die in me . . . If I could not be with my mother, I would be her” (223-224).  

Zauner’s writing is itself active and effervescent. Through her grief, she holds a steady, unflinching gaze on cancer and death. As she writes candidly about her family, Zauner is critically reflective about her own life. Her writerly achievement is the immediacy of her felt experiences, her grief and her joys made palpable. “Let me feel this,” she courageously writes, dismissing her Korean family’s admonitions to withhold tears (202). An unforgettable image of the process of loving transformation that Zauner experienced unfolds in her description of making the Korean staple kimchee. It is a slow, exacting process of fermenting cabbage that at first strikes her as “controlled death” because “[l]eft alone, a head of cabbage molds and decomposes. It becomes rotten, inedible. But when brined and stored, the course of its decay is altered. Sugars are broken down to produce lactic acid, which protects it from spoiling. Carbon dioxide is released and the brine acidifies. It ages. Its color and texture transmute. It exists in time and transforms. So it is not quite controlled death, because it enjoys a new life altogether” (223). 

As if miraculously, a few years after Umma died, Zauner’s itinerant music career took on a new life. The band she has fronted, Japanese Breakfast, recorded the album Psychopop with a song she wrote about her mother, “In Heaven.” Then they toured the U.S. and South Korea. Although her mother was skeptical about a musical career, Zauner imagined that Umma would be “glad that I had finally found a place where I belonged” (233). 

Crying in H Mart: A Memoir
Michelle Zauner

Publisher Alfred A Knopf
Place Published New York
Edition 2021
Page Count 239

Web photo by Portuguese Gravit

The house sits at the foot of a spring-green mountain, painted over with long cascading strokes of darker green, giving the impression of a verdant and peaceful setting. Contrast this to the brown ridge where the figure is sitting, huddled in a long sleeve jacket, hands tucked into pockets. The ridge is barren except for a single tree that is mostly bare branches with sparse pale-pink leaves.

Matthew Wong was a rising young painter who died of suicide on October 2, 2019. In a moving obituary by the New York Times, his mother explained that Mr. Wong “was on the autism spectrum, had Tourette’s syndrome and had grappled with depression since childhood.” This helps to explain the sense of isolation and longing in the painting, depicted by the solitary figure on a barren ridge, looking back at a house in lush green surroundings. The figure also appears to be physically cold, wrapped in long sleeve coat, hands tucked in pockets, with no skin showing, but is sadly separated from shelter by an icy white distance. This dynamic, amidst a landscape of majestic mountain rising into star-crowded sky, gives a sense of melancholy beauty and loneliness.

The title of the painting, “See you on the Other Side,” can be interpreted in numerous ways. Mr. Wong is known for incorporating mythical elements into his work, so is this the beginning of the hero’s journey? If the tree in the foreground is interpreted as being laden with pale pink flower buds, there is a sense of hope and promise that the figure is leaving home and will return triumphant on the other side. But the tree can also be seen as a representation of fall transitioning into winter, hanging onto a few withered leaves, as the last bright red autumnal leaf blows away. Is the figure heading away from the verdant house and mountain into winter, the season that classically symbolizes death? Does the other side refer to an afterlife? A third interpretation to consider is that the figure is not leaving the house, but actually trying to get there. In this case, on the other side would refer to crossing the vast white expanse where no path is marked and no help is in sight.

View the painting at Museum of Fine Arts Boston ➔

Matthew Wong’s Biography: www.matthewwongfoundation.org/biography
A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.
Web image from www.matthewwongfoundation.org/

Based on the novel of the same name by André Aciman, this multilingual film took the world by storm, using three languages (French, Italian, and English) in the first five minutes. The resulting language barriers add to feelings of yearning established by the musical score, whose key elements originate from Sufjan Stevens (Futile Devices; Mystery of Love; Visions of Gideon). Music, language, and literature carry the work’s primary themes, namely those of precocity and sexuality. Elio embodies all three—his main hobbies include transcribing music, playing the piano, and reading. These themes are further captured by the symbol of the apricot, its relationship to precocity and sexuality explicitly discussed in the film. Furthermore, the denouement of the film, arrives through a figuratively rich and overtly sensual scene involving Elio and the summer stand-in of the apricot, the peach, (1:34:30-1:40:24), beautifully capturing the relationship between Elio’s intellectual maturity and emotional naïveté.

Controversy surrounds Call Me by Your Name, primarily regarding consent and age statutes. Although Elio is over the 1983 age of consent in Italy and most United States jurisdictions, his relationship with Oliver evokes discomfort. This speaks to the historical Western perception of gay relationships as predatory. Nonetheless, their relationship warrants some skepticism, particularly regarding age-based power dynamics. The Perlmans support and watch over their son as the relationship progresses, frequently checking in and pointing him to literary passages as points of reference. In this way, the film navigates a complicated and loaded social topic, particularly in the queer community.

Further depth is added by considering the historical context of the early 1980s. By 1983, the AIDS epidemic had globally taken hold, the virus only identified in France the May prior to the events of the film. “Gay cancer” was a widely used term for a rare and defining symptom of AIDS, singling out the Western community hardest hit at that time. The merciless, viral specter of death overshadowed the gay liberation movement of the previous decade. HIV is never mentioned in the film, but its presence must be known by Oliver, adding to his own hesitations and fears about his and Elio’s sexualities. 1983 was also rife with relevant political fallout: Gerry Studds––the first openly gay member of Congress––became embroiled in a scandal involving a relationship with a 17-year-old, and Bettino Craxi was elected as Italian Prime Minister, eventually leading to the collapse of the modern Italian political machine. Craxi plays a central role in the peripheral events of the film, his influence appearing on television and in conversations with dinner guests.

Call Me by Your Name is an evocative masterpiece, one of the few movies that I can watch repeatedly (cf. Heated Rivalry). Despite my inherent preference for novels, this film, far and away, manifests a beauty missing from its literary inspiration. The actors perform splendidly, the music deepens the emotional journey, and the cinematography transports the audience perfectly to the setting. Every time I watch it, I discover greater depth and fall in love with it more, even if I can never look at a peach the same way.

Call Me by Your Name 
Director: Luca Guadagnino 
Screenplay: James Ivory 
Awards: Best Adapted Screenplay (Critics’ Choice Awards); Best Male Lead [Chalamet] & Best Cinematography (Independent Spirit Awards); Outstanding Film-Wide Release (GLAAD Media Awards); Best Editing (Nastro d’Argento Awards & Golden Ciak Awards); Breakout Actor [Chalamet] (Gotham Independent Film Awards & Hollywood Film Awards)
Year 2017 
Studio Sony Pictures Classics 
Running Time (in minutes) 132 
Based on Call Me by Your Name by André Aciman 

Web image from Sony Pictures.

DAVID HSU: What do you think is the importance of medical humanities to you at this point? 

JACKIE DUFFIN: I think it is a very satisfying way of filling in the gaps that are generated by traditional medical training and medical experience. It invites reflection, and it invites growth, and it especially encourages criticism. And those things were certainly not there in my training. Therefore, it is comforting and inspiring, both of those things for me.  

When you say it that way, there’s a certain subversive quality to medical humanities. Am I catching your answer right?  

Yes, I guess that is exactly right. Subversiveness goes with the territory of what we do as historians as well. Everyone thinks that history is about the past, but the questions that we ask of the past are generated by the present and also the inherited wisdom that we have. And there has to be curiosity and a willingness to admit that the trajectory might not have been as straightforward as is sometimes pretended.  

How do you respond to the saying that basically history is written by the victors? 

That statement is also a reminder that what might be out there as the master narrative isn’t exactly the truth or isn’t exactly the whole story. And the losers will have their own story. And sometimes that’s worth exploring. Of course, my view of medical humanities is very much affected by the fact that I am a historian. And more than any other aspect of medical humanities … that’s what interests me the most. In fact, I don’t mind admitting that the medical humanities boom that we’ve witnessed in the last decade and a half or so has been a wonderful vehicle for enhancing the presence of history in medical schools​,​ and our visibility. I’m happy to hitch my wagon to it, but I don’t claim any expertise in all the other disciplines that participate.  

One of the things I think is useful for history with respect to ​present and ​future doctors is how history is a mirror image of the clinical process and the scientific process. And that’s something that I raise​d​ with my students all the time when I was teaching, that you begin with a question. As medical practitioners, you ​also ​have a question​;​ ​i​t is the chief complaint of the patient. What is wrong with me? Why do I feel this way? And as a doctor, you consult the patient, you explore the history, you do the physical examination, and then you touch base with the clinical wisdom that’s available to you through ​the medical ​literature. And you come up with a diagnosis, which ​​determines the direction of action. As a historian, you have the question​:​ where did this come from? Or why do we do this? Or what happened then? And with your question, you interrogate the past, looking at all of what has already been published, which is the equivalent of the medical literature, but also looking at things that have been ignored, like the stories of the losers, for example. And you come up with an interpretation. And that is a direct parallel with the ​process of ​diagnosis. You can push this even further to make an analogy with a scientific experiment where you have the hypothesis, the method, et cetera, and you come up with a conclusion. I think that demonstrating history as a discipline to healthcare professionals opens up their imaginations to seeing the practice of what they do is something that’s malleable, that’s anchored in time, that’s affected by culture and society. So, my role in the medical school was to do that. It was a privileged position. But I had no idea how successful I ever was. I have a sneaky suspicion that a lot of my faculty colleagues and maybe a large number of the students just thought I was there for comic relief and entertaining stories to be told in the meantime. That’s okay. I accept that if that gave me permission to weasel my way into the curriculum or introduce new ideas. 

Tell me a little bit about this medical humanities boom over the last 15 years. What’s going on?  

As you know, medical schools are evaluated. They’re accredited by committees. And things come along that are the flavor of the month. ​P​rior to the medical humanities boom, there was an ethics boom. Many medical schools didn’t have ethics, but they looked around and they thought, oh, we better get ethics because everyone has ethics. If they got ethics, it made them look ethical. That happened in the 90s. I saw that as a real problem for people teaching history of medicine. I got along great with our ethicist at Queen’s. It wasn’t her fault, but she was my biggest enemy. Because if the school had to devote some time to what they called ​“​soft science,​”​ they would rather have the ethicist than the historian because the ethicist got them brownie points on the accreditation. ​​ 

​​T​here was a time when the American Association for the History of Medicine was meeting in Chicago in May 2014. And we happened to be meeting at the same time as the Academy for Professionalism in Healthcare. So the brass of the American Association asked to have a meeting with their leaders to find out how they managed to convince all the medical schools they needed ethics and in particular succeeded in having questions about ethics education in the exit surveys. They did not really understand our problem. I think ethics had the media going for it and the power of a number of ​high-profile​ malpractice cases that had come along. ​It​ became obvious that patients wanted to make sure their doctors were legal and ethical, and ​t​he schools wanted to give the students tools to address these concepts. It became almost urgent. 

In fact, I did some Medline searches on this at the time. The number of articles addressing history of medicine basically tanked. And the number of articles addressing medical ethics soared. There was always an interest in medical ethics. It goes way back. Hippocrates even talks about this. And then there was codification in the 18th century. But what ​arose ​in the late 20th century was this concern that it should be transferred to the students as some kind of rubric that would help them in their future to ​educate them and help them ​behave ​ethically. ​And then that sort of plateaued and along came medical humanities. 

Accreditation saw ​​this as very good for student life. They saw it as very good for student education. If you could enhance the possibility of getting a positive accreditation of your medical school, then you would acknowledge that you should have something called medical humanities. But under that umbrella, there could be just about anything. And that’s the problem with it as a discipline. It doesn’t really have a single method. It embraces so many other sorts of​ fields​. That’s the beauty of it, but it’s also the confusion of it when it tries to make its way in a curriculum that is as rigid as a medical school structure. 

In Canada we now have a society for ​Medical Humanities, the Canadian Association for Health Humanities​. I’ve attended some of the meetings but the disappointing thing about it from my perspective is there’s almost never anything about history. 

I’m curious. If history is not emphasized as part of medical humanities what is? 

Presumably it’s ethics again and reactions to technology. I think ethics underpins a lot of it​,​ but medical ethics is a very distinct discipline​,​ as is history. We’re not the same thing. We respect each other but we’re very different. So medical humanities usually include, at the Canadian meetings at least, a lot of literature, of readings, both fiction and nonfiction. It includes the arts, music, poetry, visual imagery, trauma, drama, dance, etc. And often the papers in the meetings that I’ve attended are​ almost all​ about individual case studies​: ​e.g, “We tried this at our medical school​;​ and then we did an after​-​survey about whether it worked or not. Of course, our students loved it because it was fascinating​,​ and it wasn’t memorizing the elements in the periodic table. It was something that took them out of themselves.” Often medical students have other hobbies before they get to medical school, which are sadly neglected because there’s no time for anything else. And these activities provide an outlet for them to recover their previous selves and their identity.  

I think another agenda of ​Medical Humanities ​is to raise awareness of the differences between peoples — the difference between your patients, for example, and yourself, and to be prepared to tolerate it. So that’s a subliminal message of many of these things, causing you to see the world and other people in a different and more tolerant way. That’s basically what goes on in the medical humanities conferences. People get very excited about these opportunities, a drama presentation, a collect​ive​ reading, something that they might have done together, or artwork that medical students do based on their clinical learning and then having a show about it. That kind of thing gets reported. And then … it sort of sinks into an oblivion until the next meeting comes ​​​​along.  

So it sounds like the way you’re describing it, there’s a little bit of the study of history of medicine versus medical humanities. The two are not fully in sync in your mind.  

No, they’re not fully in sync in my mind, but I accept and welcome history being seen as part of ​ ​medical humanities. I think it’s an opportunity for us as historians to maintain our place and our credibility in medical schools.  

The presence of history in medical education has gone up and down over the centuries. There have been full-fledged chairs in History of Medicine. In a distant past, they went away​ and​ they came back. What is expected of it has probably also changed through time. But now, since it seems medical humanities is an easier way​ ​to open the door to medical schools, history can be part of it. I don’t know. It would be really interesting to find out if ethicists feel the same way as I do about it. I find that some medical humanities programs are peopled by or run by doctors who are so well-intentioned​–​ very, very well-intentioned​–​ but they really don’t have any expertise in anything but medicine. The best of them, obviously, are experienced clinicians who’ve had a lot of encounters and are thoughtful and reflective about those encounters. But there’s no method. It’s not a single discipline. It’s a quilt with a whole bunch of different patches in it.  

What do you think about medical humanities and maybe more specifically the history of medicine as a vehicle for the broader mass of people out there?  

I’ve written ​11 ​books and the most recent one to get published is this one. [She holds up a copy of ​Covid-19: A History​]. What I was doing was getting it down for everyone. It’s a history for everyone. It’s not aimed at medical students or doctors or anybody in particular. It’s aimed at Canadians basically, but it talks about the whole pandemic from a global perspective. What I want to do is remind people of the personal stories that go with the pandemic, about the dilemmas of decision-making and policy choices, about the scientific endeavors that are so easy to mock or make fun of. And ​clearly,​ I’m revealing my colors. I believe in vaccines. I believed in the public health measures. I point out in this book about the value of quarantine. When you don’t know what the pathogen is and you haven’t got a clue what the incubation time is because it’s a previously unknown pathogen, quarantine is not a stupid thing to do​,​ because you are waiting to find out how dangerous it ​might ​be and put some parameters around it. I think​–​ and again, I’m speaking only from a history perspective, not medical humanities in general​–​ I think it was important to unpack what was behind those decisions that many people got so angry about. And yet they were lifesaving decisions in many cases. Sometimes perhaps it was over the top, but it was because we didn’t know what we were confronting. 

During that book writing, I served as a volunteer contact tracer at the Kingston ​[Ontario] ​Public Health Unit. I had to phone up citizens all over our area and get them to quarantine because they’d been in contact with someone who had COVID. That was very eye-opening for me because I realized at what level you had to pitch why it was a good thing to do. And at the outset, when we didn’t know what the parameters were, we were telling people who’d been exposed to COVID to stay home for 14 days. Kingston was the only health unit to use volunteer contact tracers, but we worked really hard and Kingston had the best ​​outcomes of COVID cases in the country for a brief time. It didn’t last forever, but it was like a flagrant, on-the-spot demonstration of something that has been known for years, since at least 14^th-century plague.  

What do you make of that now that we’re in 2025 and people are so over this stuff now​,​ that​ ​there’s this feeling I get that people are saying we will never go into quarantine again? 

That’s why I wrote the book. Actually, I was invited to write it, and I had to think about whether I wanted to or not. One of the reasons I decided to write about it was that my thesis advisor, Mirko Grmek, wrote a history of AIDS right at the beginning of the pandemic. And I thought, well, I can’t write a history of COVID because it isn’t over and it may never be over. We may always have COVID. And then I remembered that Grmek had written that history of AIDS at the beginning of the AIDS epidemic. He set down where it came from. He studied the historical possibilities. He had the science too. I realized he was at the end of his life, and I’m at the end of my life. And I thought, OK, maybe this is what I need to do​,​ to accept the task of writing it as it is, right now. Now ​I’m very depressed​ by these negative attitudes. But I do hope that when the next pandemic comes-​-​and there will be another pandemic​,​ with a new pathogen that we haven’t seen before​,​ and there will be conspiracy theories about where it came from​–​ I hope that the public health agencies will remember that quarantine from 14^th-century plague worked really well​,​ and that’s what we need to do again if we don’t want to overwhelm our finite resources in hospitals and health care units to look after people. The more you implement those measures, the fewer people die. It makes a huge difference​,​ and you can actually see it. So the story is there. Whether or not it will be believed, whether or not the argument can convince the naysayers, I have no idea. All I did was set it down and hope.  

You have a historian hat, which is the critical, sometimes subversive side and then you also have the medical doctor establishment side, the scientific side. It gives you a unique lens to look at the COVID pandemic and the consequences that came afterwards.  

It’s been the story of my life. I worked in cancer care at the end of my career at Queen’s and patients would tell me really interesting things​.​ I loved talking to them and hearing what they thought about what was going on. And some of them held what I would think of as wacky ideas or they’d utter doctor​-​blaming ideas. Then the doctor in me would feel very defensive about their accusations of the mistakes or the neglect of my colleagues, even colleagues I’d never met. But when it comes to the history of medicine, I feel terribly responsible for the bad things that doctors may have done, even if it was not deliberate, but out of ignorance, because they didn’t know what was going to be discovered next​;​ or ​due to ​misplaced enthusiasm for something that turned out not to be as great as everybody thought it would be. And I’ve seen that with respect to certain drugs in my career. I’m old enough to remember thalidomide babies​;​ I was a child when that happened. But the impact of it was enormous​: ​what pills could do to us and how they might harm us. There’s a new biography out that I ​reviewed for ​Medhum of Francis Kelsey, the Canadian​-​born American health official who spared the United States from the damages of thalidomide. An amazing and courageous decision because there was great pressure on her to approve the drug and she didn’t. So we had the tragedy in Canada and they didn’t in the United States​,​ which was fascinating for me to learn at this stage of my life, because I remember being so horrified and ​thinking, ​how could doctors let us down? 

There are also other procedures that were once considered important to do that we have done away with, not because they shouldn’t ever have been used, but because something so much better came along. The most striking example of that that I remember are pneumoencephalograms. Pre-CT scans, if you thought there might be a space​-​occupying lesion in the brain, you put the patient under a sort of an anesthetic. You took out a modicum of CSF and injected the same volume of air. And then you strapped them to a chair and you ​​rotated them around, taking x-rays while the bubble of air moved all around the brain to see if there was a space​-​occupying lesion. It was brutal, painful, but it was the only way to find out if there was a space​-​occupying lesion in there. And of course, you could tell only if it was bulging on the surface of the brain. It took days for patients to recover with headache and vomiting. Every medical student in my class of​ ​1974 was required to go and witness one of these so that we would not order it frivolously. And in that same year, CAT scans were introduced and nobody would ever do a pneumoencephalogram again. Ever, ever, ever. But does that mean that all the doctors who were involved in ordering pneumoencephalograms or taking the x-rays were evildoers? I don’t think so. They were trying to help. They were trying to make a diagnosis. But it was excruciating.  

If you could fix medical education and its relationship to history, what would you want done?  

I’ve written about this for a long time. I was so lucky at Queen’s; I really was. They let me get away with a lot. From my hire in 1988 until I retired, I thought the best way to bring history into medical education was to infiltrate it. The historian has to be very tolerant and very flexible. But what you do is you introduce the history of whatever it is they’re studying at any given time. History of anatomy in anatomy if they’re doing the anatomy course. History of physiology in physiology. History of pathology (essentially is the history of disease) in pathology. The timing really is everything because it’s synergistic with what they’re learning at the same time.  

With that method, you are preceded by a guy in a white coat, and you’re followed by a guy in a white coat. It gives you credibility vicariously by the people who are around you. But it makes it seem relevant in a way that otherwise it ​wouldn’t be​. If you make ​it ​an optional, elective course, the students automatically know that it’s not important. So, I refused to teach electives when I got hired at Queens, which meant that I had to meet every department head to beg for time to do a history session. There were 25 departments at the time, and only three said yes. They were​–​ anatomy, pathology, and obstetrics; I’m forever grateful.  

Early on, faculty members of those departments would come to my inaugural class on the history of their discipline. I think they were slightly checking out how “nice” I would be to their field: the history of obstetrics, for example. But they approved the approach. The most willing departments were those units in the medical school with a lot of curriculum hours​,​ ​s​o they were able to feel generous. ​“​We will give her an hour.​”​ 

But one department head said to me, “I can’t do that. History, I love history. You’d be invited to give an ​after-dinner​ speech at our annual meeting. That would be really good. But we only have 80 hours in the curriculum. And if I gave you one of those hours, they might miss something important and kill somebody.”  

I said, “Oh, thank you​,​” ​a​nd I ​went​ back to my office feeling rejected. Only later did I think of the right reply, “If you don’t give me one of your 80 hours to make them skeptical about everything else you’re going to teach them in the other 79 hours, then they really might kill somebody.” That was the answer I should have said.  

It’s about the time constraint; you can’t offer an entire course. Medical students are not going to be historians. They’re going to be doctors. So what you want to do is sensitize them to the fact that what they see as knowledge now is something that has evolved through time, through human endeavor, something that is destined to change in the future. So history is a reminder of life-long learning. And if you time it right, then it is relevant and interesting. Not all students are going to like it, but they don’t all like pharmacology either. 

And the other thing that the medical school let me do, bless their hearts, is to grant my wish for one question on every exam.  

I remember this actually.  

It was a question of credibility; a way of forcing the medical school to commit to the idea that history was important.  

All right. To wrap up, we’ll get back to Medhum. what would you like to see us do in the months and years to come? 

I’m really a special interest voter on this because I was for 25 years involved with the Literature Arts and Medicine Database. And I contributed hundreds of annotations to that database​. ​I hope MedHum is a place where people who want to use literature–mostly literature is what I think of, but there​ are ​other things there, ​for example ​film​ reviews​–in a way that will deepen their understanding of a situation, or for enhancing education, or for whatever purpose, because that’s how the database was used, that it will be there, accessible to people who want those things.  

​​​​So for me, I get to go there when I feel like it. I get to browse. I get to pick around. I already knew some of the people and from our meetings, I’ve gotten to know new ones. I think you, people of your vintage​,​ should be deciding its purpose, in terms of determining the direction and the flavor of this entity, which hopefully will have a big reach and get to the people who need to see i​​t​. You​ ​​have a better sense. You’re closer to the users. I’m not trying to be gloomy about it. I just know that it’s entirely possible that it needs to go someplace that I can’t even imagine. 

Dr. Jacalyn Duffin was the Hannah Chair of the History of Medicine at Queen’s University from 1988 to 2017. She was also a practising hematologist. In 2020, she was awarded the Order of Canada. 

More importantly, she’s one of my favorite people in the world. Medical school wouldn’t have been the same without her gentle encouragement and unending enthusiasm. Dr. Duffin, thanks for everything. 

Web image by Medhum.org

Posts Written by Dr. Jacalyn Duffin

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At age 18, Frida Kahlo suffered a catastrophic accident that had lifelong consequences. The school bus in which she was a passenger collided with a trolley. Her spinal column was broken in three places, as were her collarbone, two ribs, her right leg and foot. The treatment was to lie on her back for one month, enclosed in a plaster cast. In addition, Kahlo had polio as a child, and one leg was shorter and thinner than the other.

This stunning portrait demands the viewer’s attention. A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal, a few tears spilling down her face. She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset. On the one hand, the figure is passive, gazing at us almost without expression, completely still, acceptant of the scattered nails and rigid column that penetrate her body. On the other hand, the beauty of her perfectly formed breasts and well-formed upper body, the eyes that engage the viewer, subtly convey the energy of the figure’s spirit and will. At this point in Kahlo’s life, the painful physical problems that had plagued her on and off for years were becoming unrelenting. Doctors prescribed a variety of orthopedic corsets to support her degenerating spine. The portrait seems to personify pain and simultaneously some level of tolerance for pain.

Many who view the painting are reminded of images of Christ on the cross. Kahlo was certainly long-suffering and represented the physical and emotional aspects of her condition in many of her works (for example, “Tree of Hope” and “Henry Ford Hospital“), but the energy and originality of her personality and artistic vision shine through. For interesting commentary on “The Broken Column,” see Hayden Herrera. Frida Kahlo: The Paintings (New York: Harper Perennial) 2002, pp. 180-183. Also useful is Gannit Ankori’s commentary in her book, Imaging Her Selves: Frida Kahlo’s Poetics of Identity and Fragmentation (Westport, Connecticut and London: Greenwood Press, 2002, pp. 114-119). Ankori points out that the vertical fissure of Kahlo’s body and the fissures in the earth surrounding her evoke violation — consistent with Kahlo’s statement that a metal rod had entered her hip and penetrated her vagina.

Web image from Wiki Commons

Although Stevenson’s fieldwork was unusually thorough, mainstream scientists rejected reincarnation as a viable explanation and instead focused on potential methodological weaknesses such as retrospective testimony, cultural influence, and the difficulty of ruling out information leakage. Stevenson described the cases as “suggestive,” but he made clear that reincarnation—or at least the survival and transfer of some aspect of personality—was, in his view, the most plausible interpretation.

The twenty cases in the 1966 volume represented only a fraction of the material Stevenson had been collecting since 1960. His early publications had attracted the attention of Chester Carlson, the inventor of the Xerox process, who left a bequest of one million dollars to the University of Virginia upon his death in 1968. The Department of Psychiatry used the gift to establish the Division of Perceptual Studies (DOPS), with Stevenson as its founding director. The name provided an academically respectable umbrella for research that included, but did not explicitly advertise, the study of children’s past-life memories.

Over the next three and a half decades, Stevenson and his colleagues expanded their investigations across Asia, the Middle East, Africa, Europe, and the Americas. By the time of his death in 2007, Stevenson had published twelve additional books and more than three hundred papers, documenting over 2,000 cases. In 1999, journalist Tom Shroder’s detailed investigation, Old Souls. The Scientific Evidence for Past Lives offered an intimate portrait of Stevenson’s fieldwork and helped bring the research to wider public attention.²

Leadership of the program passed to child psychiatrist Jim Tucker in 2002, when Stevenson retired.³ Tucker became Director of DOPS in 2014 and, in 2021, published Before, an updated synthesis of his own two earlier books. ⁴ Tucker reports that the DOPS database now includes more than 2,500 cases worldwide, including many from North America. Only a minority—roughly 15–25 percent—qualify as “strong cases,” meaning that the child’s statements were independently verified as matching a specific deceased individual.

The strongest cases share several converging features: verified statements about the previous life, verified identification of the deceased individual, physical correspondences such as birthmarks or birth defects, behavioral continuities, and early onset of statements. One of Stevenson’s most striking findings involved physical correspondences. By 1997, he had documented 210 cases in which a child had a birthmark or birth defect corresponding to a wound on the deceased individual, and in 49 of these, he obtained autopsy reports confirming the precise wound locations.⁵ These findings were presented in detail in Where Reincarnation and Biology Intersect and in his massive two-volume monograph Reincarnation and Biology.⁶

Here is an example of one of Ian Stevenson’s earlier strong cases. When Swarnlata Mishra was three years old, she began singing unfamiliar songs and performing dance steps her family had never seen, dances from a region of India more than a hundred miles from the family’s home. Soon she was describing a former life as a woman named Biya Pathak, recalling the layout of Biya’s house, the names of her children, and even a stash of money hidden in a wall. Stevenson documented her statements before any contact with the Pathak family, and when they eventually visited, Swarnlata greeted them with an ease and specificity that startled everyone present. She correctly identified family members, teased one man with a childhood nickname only Biya had used, and pointed out a brother’s limp. The encounter had the uncanny feel of a reunion rather than an interview, and for Stevenson it became one of the clearest examples of a case where detailed memories, personality traits, and verifiable facts converged before any possibility of normal information transfer.

More than half a century later, Jim Tucker encountered a very similar pattern in the case of “Ryan,” a young boy from the American Midwest. At age four, Ryan began speaking urgently about a previous life in Hollywood—describing movie sets, agents, and a bustling life in Los Angeles. His parents, who had no interest in reincarnation, tried to reassure him, but the boy’s distress grew until Tucker became involved. Using Ryan’s spontaneous statements, Tucker and the family identified a long-forgotten bit-part actor and Hollywood extra from the 1930s and 40s. Ryan had given more than fifty details about this man’s life, including the street he lived on, the name of a restaurant he frequented, and the fact that he had danced on Broadway before moving west. Many of these details were later verified in archives and autobiographical sources unavailable to the family. What made the case especially compelling to Tucker was not only the accuracy of the statements but the emotional tone: Ryan spoke of the former life with longing and confusion, as if caught between two identities, until the memories gradually faded around age six.

Here is an example of a case in which the child had birthmarks corresponding to the deceased person’s wounds. In rural Burma, a young boy began speaking at age three about having been a man who was shot from behind while walking along a road. His parents were startled not only by the specificity of his statements but by his two unusual birthmarks: a small, round mark on his chest and a larger, irregular one on his back. When Stevenson later investigated, he found that the boy’s descriptions matched the death of a man from a nearby village who had been killed by a close-range gunshot. Eyewitness accounts and medical documentation confirmed the wound pattern, which corresponded closely to the boy’s birthmarks. The child also showed a deep, visceral fear of guns and loud noises, reacting with panic in ways that seemed disproportionate to anything in his current environment. The case combined early and detailed verbal statements, independently verifiable information about a violent death, and physical marks on the child’s body that mirrored the trauma he described.

Stevenson’s long-term research program—and Tucker’s continuation of it—poses a direct challenge to the assumption that consciousness is wholly generated by the brain. Across more than 2,500 investigated cases, they documented young children who spontaneously described memories, behaviors, and emotional dispositions corresponding to identifiable deceased individuals. While most cases are incomplete or ambiguous, a substantial minority meet stringent evidential criteria, and more than two hundred combine multiple independent lines of evidence: verified statements, behavioral continuities, and physical correspondences. Critics have proposed cultural contamination, suggestion, fraud, or loose investigative methods, but none of these explanations plausibly account for the best-documented cases, especially those with medical records, multiple independent witnesses, and physical anomalies. Even the most skeptical reviewers have struggled to articulate a coherent alternative hypothesis that explains the full pattern of data.⁷

For more than sixty years, however, mainstream scientists have dismissed the research. Critics argue that the stories of past lives are most likely due to coincidence, misinterpretation, parental influence, observer bias, or other sources of error. They emphasize the complexities of contextualizing and translating these “memories,” especially in cultures with strong beliefs in reincarnation.⁷ Yet critics rarely engage with the case narratives themselves; instead, they rely on hypothetical sources of error. To attribute all of these cases solely to flawed methodology would require assuming that Stevenson, Tucker, and DOPS have repeatedly committed the same errors for six decades despite their detailed rebuttals of such claims.

The deeper criticism, however, is philosophical. Although surveys show that most Americans and physicians believe in a soul or spirit, most philosophers and neuroscientists endorse a materialist-reductionist view: the brain creates the mind through electrochemical activity, and consciousness ends with the death of the body. Clinically, there is ample evidence that consciousness depends on a functioning brain—brain injuries and diseases clearly alter mental states, and imaging techniques reveal neural pathways associated with various emotions and thoughts. For clinical purposes, consciousness appears entirely dependent on the physical brain.

Yet this dependence does not settle the metaphysical question of what consciousness is. Critics of Stevenson and Tucker often assume, without argument, that the physical world as described by contemporary physics is the totality of what exists, and that consciousness must therefore be a byproduct of physical interactions. But subjective experience—the interior world of personal identity—does not obviously follow from any known property of quarks, electrons, photons, neutrinos, or the forces that govern them. The gap between third-person description and first-person experience is conceptually radical. No arrangement of particles, however complex, seems to entail subjectivity, i.e. interior life, in the way that arrangements of particles entail objects, organisms, or chemical bonding. To assume that this gap will close through further study of neural circuitry is to smuggle in a metaphysical conclusion under the guise of scientific optimism.

The quantum world is exceptionally weird – in many ways it violates common sense. Particles are also waves and waves are particles. An electron can be in multiple places at once. The behavior of one particle may determine the behavior of another, even though they are too far apart for a message to pass between them. Particles can tunnel through barriers apparently without having enough energy to do so. However, none of this weirdness suggests that large accumulations of particles (e.g. atoms, molecules, brains) could generate an interior world of personal identity There must be a deeper, more complete, theory of what exists in the universe that does account for the generation of consciousness; a quantum of subjectivity, if you will. As science writer Jim Holt summarized in Why Does the World Exist?, “The properties of a complex system like the brain don’t just pop into existence from nowhere; they must derive from the properties of the system’s ultimate constituents. Those ultimate constituents must therefore have subjective features themselves.”⁸

This is why the possibility that consciousness has a fundamental place in the universe is not mystical speculation but a legitimate philosophical alternative. Some philosophers and neuroscientists propose that consciousness may be an intrinsic aspect of matter, or that the universe contains a fundamental “interior” dimension alongside its measurable exterior. Panpsychism—the view that consciousness is woven into the structure of matter—is endorsed by a small, but growing, minority of philosophers, including David Chalmers⁹, Philip Goff¹⁰, and Galen Strawson.¹¹ Another group, notably Thomas Nagel¹² and John Searle¹³, acknowledge that our current physical ontology is incomplete, although not fully endorsing panpsychism. Physics has repeatedly revised its understanding of matter; it is not unreasonable to suspect that consciousness may require a similarly deep revision. To quote Thomas Nagel, “Consciousness is the most conspicuous obstacle to a comprehensive naturalism that relies only on the resources of physical science. The existence of consciousness seems to imply that the physical description of the universe, despite its richness and explanatory power, is only part of the truth.”¹²

Given these considerations, the continuation of consciousness, at least in some form, after death seems at least a possibility. Stevenson and Tucker’s work may well represent the identification of a previously unknown natural phenomenon, perhaps analogous to reported near-death experiences — well-documented yet difficult to explain. To my mind, this conclusion is more likely than is six decades of repeated errors.

However, that doesn’t mean the “former lives” data necessarily support a traditional doctrine of reincarnation, in which a unitary soul passes from one body to another. If a psychic dimension of the cosmos exists, a one-to-one transmission of “mind-stuff” to a newborn baby in the same country and culture seems overly simplistic, more in line with supernatural beliefs than with an unknown natural phenomenon. It is notable that the phenomenon is rare and the memories transient and strongly associated with traumatic death. Could it be that, under certain conditions, a “package” of psychic impressions may transfer from a dying person to a newborn, occasionally even influencing the child’s body? This, like any other scenario, is speculative, given our ignorance of the origin and meaning of consciousness in the physical world.

The broader point is that most philosophers and neuroscientists begin with an unexamined premise: that everything real must be physical in the sense described by current physics. But consciousness—the one phenomenon we know from the inside—does not obviously fit within that framework. Before declaring that mind must be reducible to matter, we should ensure that our conception of matter is adequate to account for mind at all. Consequently, Stevenson’s and Tucker’s six-decade quest to understand the experience of children who report having lived former lives should, if anything, leave us wondering whether we really know what we think we know about the way the universe works.

References 

1. Stevenson, Ian Twenty Cases Suggestive of Reincarnation, University of Virginia Press, 1980 [First published in 1966] 
2. Schroder, Tom. Old Souls. The Scientific Evidence for Past Lives. New York, Simon & Schuster, 1999 
3. Tucker, Jim B. Ian Stevenson and Cases of the Reincarnation Type, Journal of Scientific Exploration. 2008; 22: 36-43 
4. Tucker, Jim. B. Before: Children’s Memories of Previous Lives, St. Martin’s Press, 2021 
5. Stevenson, Ian. Where Reincarnation and Biology Intersect. Westport. Praeger, 1997 
6. Stevenson, Ian. Reincarnation and Biology: A Contribution to the Etiology of Birthmarks and Birth Defects, Westport, Praeger, 1997 [Two volumes] 
7. Matlock, J. G. ‘Reincarnation Case Studies: Criticisms’. Psi Encyclopedia. London: The Society for Psychical Research. <https://psi-encyclopedia.spr.ac.uk/articles/criticisms-reincarnation-case-studies/>. (2022, retrieved 24 March 2026) 
8. Holt, Jim. Why Does the World Exist? London, W. W. Norton & Company, 2012, p. 194 
9. Chalmers, David J. The Conscious Mind: In Search of a Fundamental Theory. Oxford University Press, 1997 
10. Goff, Philip. Galileo’s Error. Foundations for a New Science of Consciousness. New York, Pantheon Books, 2019 
11. Strawson, Galen. Consciousness and Its Place in Nature, Imprint Academic, 2024 
12. Nagel, Thomas. Mind & Cosmos. New York, Oxford University Press, 2012, p. 35 
13. Searle, John. Mind: A Brief Introduction, Oxford University Press, 2005 

Web image by Medhum.org

In the throes of the early AIDS crisis, people began stitching panels to remember their loved ones. The panels were joined in quilts, and the quilts were joined with each other until they became bigger than a tennis court, bigger than a football field. So unwieldy it became, the giant quilt had to be broken into pieces in order to be manipulated. Chunks would tour on display. It now has a virtual existence too and is curated by the National AIDS Memorial.

In 1989, Robert Epstein and Jeffrey Friedman made Common Threads, a 79-minute documentary, narrated by Dustin Hoffman. Based on the AIDS Memorial Quilt, their film traced the stories of five people who had died through the words of their grief-stricken friends and family. The survivors describe the solace that they had derived from quilting memorial panels for their loved ones. They also refer to milestones in the disease history: the president who would not utter the word; the movie star who acknowledged his own disease only after 15,000 had already died. The five divergent tales serve to emphasize the awesome scope of the tragedy: each panel and each name must recall an equally unique and cherished life cut short. In their final scene, the AIDS quilt lies on the Mall in Washington as names of hundreds of loved ones are read by grieving families and friends.

As the drone-less but steady camera slowly pulls back high above the patches of color in the evening light, I was reminded of the famous, expanding scene midway through, Gone with the Wind, as Scarlet O’Hara picks her way through the waste of Civil War wounded and dead. Common Threads is equally political, and it too is a love story. It won the 1989 Academy Award for Best Feature Documentary. I cannot help but imagine that the quilt and the film helped to generate the protections against discrimination of people living with HIV/AIDS provided by the Americans with Disabilities Act, signed into law in 1990.

Stitchery, knitting, embroidery, macramé and crochet have long been significant components of occupational and art therapy for mental and physical health (Leone 2021; Youngson 2019). But they have been marshalled into numerous anti-war, anti-discrimination, pro-environment causes with remarkable aplomb, talent, and humor. Remember the pink Pussyhats from the Women’s March in 2017? Patterns for them still abound on the web. The possibly antediluvian origins of crafting protest are featured in history and fiction: recall Charles Dickens’s knitters at the foot of the guillotine (Tale of Two Cities, 1859); or Margaret Atwood’s Zillah who makes art from dryer fluff, calling it “naive surrealism with a twist of feminist lemon” (Cat’s Eye, 1988); or even Peggy Erhart’s more frivolous parking-meter protest in small-town America (A Dark and Stormy Knit, 2024).

Self-described “craft nerd,” Betsy Greer coined the word “craftivism” in 2003. She wrote Knitting for Good (Roost Books, 2008) and edited an anthology that goes well beyond knitting to other techniques and contexts (Craftivism, Arsenal Pulp Press, 2014). Scholars have noticed (e.g., Moreshead and Salter, 2023; Vachhani et al, 2025). The diffuse movement has even found critics who challenge its “white, feminist appropriation of graffiti,” and seek to empower it to “evolve and become a more intersectional” practice (Close, 2018).

References 
Close, Samantha. Knitting activism, knitting gender, knitting race. International Journal of Communication 12 (2018): 23-23. 
Leone, Lauren. Craft in Art Therapy. Routledge, New York and London, 2021 
Moreshead, Abigail, and Anastasia Salter. Knitting the in-visible: data-driven craftivism as feminist resistance. Journal of Gender Studies 32.8 (2023), 875–886.
Vachhani, Sheena J., Emma Bell, and Alexandra Bristow. The Affective Micropolitics of Craftivism: Organizing social change through the minor gesture. Organization Studies 46.4 (2025): 525-547. 
Youngson, Bel. Craftivism for occupational therapists: finding our political voice. British Journal of Occupational Therapy 82.6 (2019): 383-385. 

Web image by Medhum.org

Attending plays is not always just a passive experience. Through various means playwrights, producers, composers, choreographers, set designers, and others have available to them, they can make plays immersive and interactive for audiences. A good example, among many, is Florian Zeller’s play, The Father. 

The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who in a 2021 interview with Forbes Magazine,* said his aim was, 

to tell the story from the inside and put the audience in a unique position as though they were going through a labyrinth—questioning everything they’re seeing. It also was a way for me to play with the idea of disorientation because I not only wanted The Father to be a story but also an experience. The experience being what it’s like to lose everything, including your own bearings as a viewer and to be uncertain of what is and isn’t real. It was a way for the audience to experience a slice of dementia.

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as circumstances for various behaviors like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and André’s nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations. 

The Disorienting Is Clarifying

If the play had been staged as the customary audience view of outside looking in, the audience would have merely witnessed the familiar manifestations of Alzheimer’s disease and a familiar progression of events. This view would have afforded a new appreciation for the trauma it causes to those who are not closely acquainted with the symptoms of Alzheimer’s, while those who are familiar with them could possibly achieve a measure of catharsis. Zeller endeavors to do much more by offering a view of Alzheimer’s from the inside looking out and a means to grasp the actual experience of it. He is successful when audience members find themselves working as hard as André is to discern fact from fiction, past from present, and here from there.   

This can be no easy feat for the stage, and no wonder then that the Broadway production team enlisted an “illusion consultant” (Jim Steinmeyer) and a medical advisor (Dr. Randi Diamond). The intimate experiences the actor playing André (Frank Langella) and the director (Doug Hughes) have had with Alzheimer’s disease through family members no doubt contributed to the production’s authenticity as well.  

Zeller doesn’t leave the audience members defenseless in their efforts to orient themselves. He associates André’s grasp of his own situation with the whereabouts of his watch: “I need to know exactly where I am during the day. I’ve always had this watch, you know. If I were to lose it, I’d never recover.” As André’s dementia progresses and his powers of perception weaken, we see fewer objects in Anne’s flat. In the end, Zeller is hoping that confusing and disorienting the audience members will clarify the dementia experience for them.

Notes:
*Dawson A. Florian Zeller takes viewers into the labyrinth of dementia with The Father. Forbes. March 30, 2021.
This essay is based on a live performance of The Father presented by the Manhattan Theater Club at the Samuel J. Friedman Theater in New York City that ran between April and June of 2016. 
Translated from French by Christopher Hampton.
Brain photo:  Processing language, left brain hemisphere (sagittal view). Stephanie Forkel, NatBrainLab. Source: Wellcome Collection
License: Attribution 4.0 International (CC BY 4.0)
Watch photo from Wikicommons images and licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.