A Most Unexpected Path Laid by a Most Unexpected Disease

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle. 

In June 1981, a few weeks before I began my internship in family practice [at Saint Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both. 

Slotten spent a lot of time at Saint Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired.” (p. 109) In contrast to his commitment, he recounts how some specialists he called for help with particular patients refused when told they had AIDS. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need.” (p. 108)

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked (e.g., the famed Howard Brown Clinic), and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The 2020s are approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. That dream ended abruptly just as the book was released on July 15, 2020: Covid was surging.

Moments of Horror, Relief, Calm, and Then…

Slotten’s perspectives correspond with the trajectory of AIDS over the thirty-five years his memoir spans. Particular periods are discernable, beginning when gay men were presenting with illnesses associated with profound immunodeficiency of unknown cause. Another is the time of peak AIDS death and destruction represented by the moment in 1992 when Slotten hears from the Chicago Board of Health, “that no one had signed more death certificates in Chicago than I had.” (p. 122) The next moment arrives at the turning point when highly active antiretroviral treatment (HAART) became available, transforming HIV/AIDS for him “from a universally fatal disease…into a chronic one like diabetes…it was almost beyond belief.” (p. 186) Then the prolonged period of relative calm when AIDS became controllable—even preventable—with Slotten noting during a moment in 2016 that, “It had been almost a decade since I’d cared for someone with advanced HIV infection, and I hadn’t lost a patient to AIDS since 2004.” (p. 202)

The AIDS epidemic is known for and measured by the number of deaths that occurred. Slotten wants us to remember the misery the disease causes.

For those who didn’t experience that terrible time, or who’ve forgotten how terrible it was, let my chapters serve as a warning to the complacent and the ignorant: untreated HIV is as ruthless as any terrorist and as destructive as a nuclear device. (p. 3)

He drives this point home when he recounts the stories of individual patients tortured by Pneumocystis carinii pneumonia, Kaposi’s sarcoma, cytomegalovirus retinitis, herpes simplex infections, cryptosporidium dysentery, AIDS wasting syndrome, AIDS dementia complex, and progressive multifocal leukoencephalopathy among other medical horrors, and who often suffer many at the same time. And, all the while, he had little to offer but his wits and his compassion. 

Both attributes would be called upon again in 2020 as Covid struck. Though those with Covid did not produce nearly the fatality rate of AIDS, not nearly the severe comorbidities of AIDS, not nearly the stigma and prejudice as AIDS, and not any of the governmental insouciance seen with AIDS, it still caused a lot of death, suffering, grief, and misinformation at a time when only supportive care was available. Like AIDS, though, the Covid pandemic was transformed into a manageable syndrome with the availability of an effective vaccine, new antiviral agents, and better clinical management regimens.

Complacency remains a threat to the reemergence of any infectious disease. Indeed, AIDS is reportedly rising in poor and developing countries in 2026 as funding for AIDS treatment and prevention programs has been withdrawn from donor countries, mostly that from the United States. Lessons from Slotten’s book may thus be called upon again.

Notes

Book citation:
Slotten, Ross A. Plague Years: A Doctor’s Journey through the AIDS Crisis. University of Chicago Press, 2020. 224 pages

Plague Years is a good companion to the documentary film, 5B, which reports on how San Francisco General Hospital coped during the early years of the AIDS epidemic, and Rebecca Makkai’s novel, The Great Believers which features the stories of a group of gay men in Chicago also during the early years of the AIDS epidemic.

Dr. Slotten was a guest on an episode of The Clinic & The Person podcast to discuss his experiences during AIDS epidemic as he reported them in his book, and how well they match up with what we see in 5B and read in The Great Believers.

Web image by Medhum.org

Out of the gay rights activism in the 1970s came AIDS activism in the early 1980s. By then, the incidence and severity of AIDS had become evident and caused enough fear to generate social backlash against those with the disease. This, along with federal government insouciance at the time, made it necessary for gay rights activists to extend their remit into advocacy for health care specialization and research advancements for AIDS. The expanded activism was visible on the streets and at governmental research institutions (e.g., National Institutes of Health). Where it was also taking place, and not in such an obvious way, was within certain hospitals.  

San Francisco General Hospital answered the call first in 1983 when it created a special unit for the care of people with AIDS in “Ward 5B.” The unit was in operation through its move in 1986 into Ward 5A to accommodate more patients, and until 2003 when advances in antiretroviral treatment of AIDS made the unit no longer necessary. But throughout, the struggle to maintain and advance the unit medically, socially, and politically persisted. The documentary film, aptly named “5B,” covers the struggles, successes, and failures of the unit, and the activism required of the staff and advocates for its creation and ongoing viability.  

From the Inside 

The story is told from various perspectives through interviews with key figures in the unit’s development and operation, and with archival footage of the unit and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are also featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened, is heard often as an opposing voice. Hank Plante, a local television news reporter, also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of unit patients. 

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.    

Rare is the story, though, about heroes who aren’t confronted with daunting challenges, and thus this documentary includes a storyline involving attacks the unit nurses encountered from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require them to don so much protective gear they become unseeable. Nurses and clinicians from other units objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates. The spirit of activism among the unit staff was pivotal in fending off the many challenges they faced. 

Keeping in Touch 

The documentary reveals stark juxtapositions that can manifest in the midst of an infectious epidemic, and in particular when an epidemic selects an identifiable group that is unwelcome in mainstream society. Two juxtapositions that stand out are the emotion of love with that of fear, and those who are deemed worthy with those who are considered disreputable. 

No treatments for the HIV infection or for the many horrid and lethal diseases resulting from AIDS were available when the unit opened—it was “a very, very unpleasant death” as one nurse put it. The nurses saw a big part of their role as offering love: “Here you were allowed to love your patients.” They offered it through human touch. Morrison’s view was, “If we can’t save these folks, we’re going to touch them.” To touch the patients in this way required that they balance it with the risk of exposure to infection and still comply with universal precautions. Nevertheless, fear was prevalent—some people were “truly hysterical” according to Gerberding—and it touched off conflict among the health care staff. “People were afraid…we found ourselves attacking each other…everyone was so stressed,” is how Volberding described the situation. This balance is one that is continuously negotiated in health care settings, but it was more pronounced during the early years of the AIDS epidemic, and at San Francisco General, it had to be mediated by hospital and union officials. 

At the time unit opened, and for a long while after, people with AIDS were scorned. The gay lifestyle was linked to the disease and so a view held by many was that the gay community deserved to be struck down by this plague. They were not worthy of all the human resources, technology, and money the disease required. The documentary brings this sentiment to life by showing the actions some people took to prevent getting these patients help, and the actions governments didn’t take to help them. Also shown, however, was how the activism of health care professionals and others in Ward 5B helped to overcome these obstacles. Without it in the case of the unit in Ward 5B, the activism in the streets outside the hospital alone may not have been enough.  

But Then 

These fevers abated some when medical advances produced treatments that obviated the need for AIDS units, and changes in societal attitudes led to more acceptance of gay lifestyles. The next epidemic that targeted marginalized and susceptible groups would determine whether lessons learned from the time of this unit had been incorporated in response protocols. That opportunity came the year this documentary was released in 2019 when Covid struck elderly people first and hardest, and especially those in communal living arrangements.  

Note: 

The documentary was featured on the podcast episode, How Terrible It Was: Three Takes on the AIDS Crisis with Dr. Ross Slotten, which can be accessed here on medhum. In addition to the documentary, the podcast episode included the novel, The Great Believers, and the memoir, The Plague Years: A Doctor’s Journey through the AIDS Crisis were discussed. The author of the memoir, Dr. Ross Slotten, joined the podcast as a guest. 

Title image credit: 
James Steakley, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons 

Documentary information: 
Film title: 5B
Directors: Paul Haggis, Dan Krauss 
Studio: Vertical Entertainment 
Viewing source: Amazon Prime 
U.S. release date: June, 2019 
Run time: 134 minutes  

Trailers from 5B Film

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

One of the most horrifying events of that year was the prisoner revolt at the Attica State Prison in upstate New York in early September. I did not live in New York at the time and have only a vague recollection of reading the newspaper reports of what happened. But ask anyone living in New York who was at least 15 years old at the time and they will tell you that they have vivid memories of what transpired over the five days from September 9-13. In this extraordinary book, Heather Ann Thompson recounts in all its gory detail the prisoner uprising, the bloody retaking of the prison by state troopers, and the nearly thirty years of investigation and legal wrangling that occurred in its wake.

By the late summer of 1971, there had been prisoner rebellions in state penitentiaries across the country including a nearby high security facility in Auburn NY. There was increasing tension and escalating prisoner protests against the inhumane conditions in all prisons including overcrowded cells, limited access to food and fresh air, and routine brutal treatment at the hands of the correction officers. Finally, Attica Prison erupted on September 9 after a minor skirmish between guards and prisoners. The prisoners took 38 hostages and over a thousand prisoners escaped their cells and crowded into the prison yard. They created a communal space to take care of each other that was equipped with meager resources. There was a central meeting area for the leaders of the uprising. They created a human shield around the hostages to protect them from harm.  

Over the next four days, there were intense negotiations between prison officials and the prisoners. A team of observers including Tom Wicker was  brought in at the request of the prisoners to serve as witnesses and act as potential mediators. Finally, after negotiations fell apart over the prisoner demand for amnesty, the troopers, without warning, dropped tear gas cannisters from helicopters and stormed the yard. Tragically, when the dust had settled, 32 prisoners and 11 hostages had been killed by bullets fired by the troopers. This terrifying sequence of events is described in the first third of the book. The remaining part details how prison wardens destroyed critical forensic evidence and collaborated with state politicians up the chain to Governor Nelson Rockefeller’s office to portray the events as a successful suppression of a radical-supported attack against the state. They solicited false testimony and pursued a one-sided prosecution of the prisoners for the murder of one guard and several prisoners. There are too many villains in the story but also some true heroes – a coroner who refused to back down from his post-mortem examination showing that all the victims were killed by gunfire, knowing that only the state troopers had firearms. The prisoners who confronted the legal system, defense lawyers willing to take up the cause of the prisoners, a brave state lawyer who was an essential whistleblower, all were vital in the pursuit of truth. At the end, the justice system failed nearly everyone involved, and Attica Prison remained an important part of the New York State correction system. The only monument is a stone at the entrance to the prison memorializing the hostages who died. 

This book is over 500 pages long. Along with another thick book, titled A Bright Shining Lie: John Paul Vann and America in Vietnam, it sat on a shelf in our apartment forever. For some reason that I cannot explain, I picked the book up recently and could not pull myself away from this intense and horrifying story. For more than a decade, Heather Thompson immersed herself in the archives and interviews with key actors in the Attica uprising story. She unearthed the bloody shirt that had been removed from two victims of the siege. Her research is evident on every page.

There are two deeply disturbing underlying themes in the book. The impact of politics and the sheer desire to retain power had a distorting influence on how the uprising was handled and how it was investigated. After watching Nixon get elected as the law-and-order candidate, Rockefeller felt compelled to take the same stance. Consequently, he refused to get involved in the negotiations or visit the prison, something that may have lowered the temperature and enabled a peaceful resolution of the siege. It is disquieting to read how many politicians and officials put self-interest and survival ahead of the pursuit of truth.   

In the immediate aftermath of the uprising, systemic changes were made to improve the well-being of the prisoners such as limits on the amount of time they could be put in solitary confinement, more time outside each day, better food, and access to legal resources. But over time, things slowly began to revert and look more like 1971 than 2021. There has been a continued growth in the number of prisons and a prison population that is larger than in any other Western country. There is disproportionate incarceration of Black and Hispanic men, often for mild offenses that would not warrant detention in a high security prison. Mistreatment of prisoners, unfortunately, is more the rule than the exception. Many explanations are offered – political positions, self-interest, and institutional inertia. But it does underscore how hard it is to make change real.  

As the country as a whole and the medical profession in particular undergo scrutiny about racist attitudes and practices, this book is a reminder that it will take an extended and concerted effort to achieve equal treatment for citizens in the penal system and in the health system. It may be easy for some to justify harsh treatment of criminals in prison or poor people living in squalid conditions. But we need to remind ourselves that a society can only be judged based on how it treats the most unfortunate within it. This applies across the board, housing, education, and healthcare.

Blood in the Water: The Attica Uprising of 1971 and its Legacy 
Heather Ann Thompson 
Miscellaneous Winner of the 2017 Pulitzer Prize in History 
Publisher Pantheon Books 
Place Published New York 
Edition 2016 
Page Count 724 

Web image by Larry Farr 

In her 2011 book Blood Feud (also published as Blood Medicine), award-winning journalist Kathleen Sharp describes a wrenching example of whistleblowing in the pharmaceutical industry about a drug designed to promote the growth of blood cells.  

Beginning in 1992, Mark Duxbury and Dean McClellan became high flying salesmen for Johnson and Johnson, Ortho branch – happily promoting the anemia drug Procrit (or Epogen — erythropoietin). (Yes! that’s the same hormone sometimes abused by high-performance athletes.) Developed by fledgling Amgen, Procrit was licensed to Ortho for specific uses. The two salesmen rejoiced as their careers took off; during 1993, they earned bonuses and their stature rose. Soon however, Duxbury was being encouraged to promote the drug for off-label uses and in high doses—all to enhance sales. He began to realize that the drug was not safe when used in these situations: people were dying because their unnaturally thickened blood resulted in strokes and heart attacks. He was appalled by the fact that the company was giving kickbacks to prescribers who were making false claims to Medicare. 

Duxbury raised objections with his employer. For voicing concerns, he was ostracized and then fired in 1998. Along with the stresses of his work, the financial difficulties, and emotional turmoil, Duxbury’s home life collapsed, his marriage fell apart, and he worried about his daughter, Sojourner. He developed multiple health problems, including sleep apnea and dependency on drugs and alcohol. 

Duxbury enlisted the help of the famous lawyer Jan Schlichtman featured in the 1995 book, A Civil Action, by Jonathan Harr (also the famous 1998 film starring John Travolta). In 2003, they launched a qui tam lawsuit under the False Claims Act against his former employer. A qui tam case allows an individual to sue on behalf of the government (i.e. the people); if successful, the individual will be entitled to a portion of the proceeds. The process stalled but was revived in 2009. However, Duxbury died suddenly of a heart attack in October 2009 at age 49 with the case still unresolved. The potential value of his qui tam was unknown but was estimated to be 150 million dollars four years later.  

Contacted by Duxbury in 2004, author Kathleen Sharp, initially hesitated to take up the project. After the FDA issued increasingly alarming warnings about the dangers of Procrit in 2006-7, she began to take his concerns more seriously.  Relying on interviews and many documents from courts and private papers, Sharp reconstructed the events in a narrative that resembles a novel, with direct quotes and even the inner thoughts of the players. Duxbury’s death intestate comes as a shock to the reader, as it may well have been to the author. Reference notes support the unverifiable claims made in her narrative—placing it somewhere in-between “recreative” journalism and fiction. 

Since the publication of Blood Feud, the case was referenced in an unsuccessful suit by Duxbury’s daughter Sojourner against her stepmother in 2013 and an appeal of the same year, which gave judgement to the defendant (i.e. not Duxbury). Duxbury v. Ortho Biotech has become an important precedent cited in other qui tam cases into the present. 

Blood Feud raises concerns about the behavior of pharmaceutical companies in duping their own salesmen to generate income even at the cost of human life. But it also invites consideration of the too-often-neglected responsibilities of the health care profession and the government. The thorny legal aspects of the pharma industry and its regulation result in multiple lawsuits that contribute to the ever-higher costs of drugs. 

Blood Feud: The Man Who Blew the Whistle on One of the Deadliest Prescription Drugs Ever 
Kathleen Sharp 
Dutton, New York, 2011: 432 pages 

Web image by Medhum.org

The artist depicts Chekhov as he was in the early 1890’s, soon after he had purchased a small, dilapidated estate and moved there from Moscow with his family. In addition to serving as country doctor and public health official in Melikhovo, Chekhov at that time was composing many of the stories and plays that made him one of Russia’s most well-loved writers and a major influence on 20^th century literature. How was he able to pursue two such different and demanding careers? Several years earlier, at the height of Chekhov’s early literary success, his friend Alexi Suvorin had urged the young writer to give up medicine. Don’t spread yourself too thin, he said. You’ll never reach your potential unless you concentrate on writing. In response, Chekhov wrote, “You advise me not to chase after two hares at once and to forget about practicing medicine. Well, I don’t see what’s so impossible about chasing two hares at once… Medicine is my lawful wedded wife and literature my mistress. When one gets on my nerves, I spend the night with the other. This may be somewhat disorganized, but then again, it’s not boring, and anyway, neither loses anything by my duplicity.” (1) In this famous passage, the 28-year-old writer dances lightly over a fundamental truth of his life and identity. In fact, Chekhov’s career was not so much a matter of jumping from one bedroom to another, as was the case perhaps with the poets Wallace Stevens and T. S. Eliot, or the composer Charles Ives. Rather, Chekhov thrived on the effective, if not always seamless, integration of the arts of medicine and writing, which reinforced one another throughout his creative life. This essay explores that integration, and the manner in which Chekhov’s cold eye (objectivity) and warm heart (compassion) reveal themselves in his medical and literary lives. 

DOCTOR CHEKHOV  

“Medicine Is My Lawful Wife” 

When he graduated from the Moscow State University School of Medicine in June 1884, Chekhov was already earning his living as a professional writer. The grandson of serfs, Anton was the third of six children in a poor merchant family from Taganrog, a southern provincial town on the shore of Sea of Azov. His father had moved the family to Moscow after going bankrupt in 1877. By the time Anton entered medical school on a scholarship in 1879, the Chekhovs were living in squalor. His father had a dead-end job. His older brothers were alcoholics and generally unemployed. Anton soon discovered that he could ameliorate the situation by selling comic sketches to local magazines for eight kopecks per line. This was a type of moonlighting he loved. He wrote obsessively, often knocking off a story or two each night, after spending the day listening to lectures or working in the hospital. Chekhov ultimately published more than 200 pieces while a medical student, most of them under his preferred pseudonym, Antosha Chekhonte. 

Chekhov was a natural storyteller. Thus, it wasn’t surprising that the newly minted Doctor Chekhov continued to write, even after he opened his office and patients began to arrive. “Continued to write” is an understatement. Chekhov published 54 stories in 1885, 76 in 1886, and 57 in 1887. His work evolved from humorous sketches to longer, more serious stories for leading literary journals. In 1888 Chekhov won the prestigious Pushkin Prize and published “The Steppe,” his longest and most innovative story to date. Ivanov, his first full-length play, had a successful premiere in St. Petersburg in January 1889. By that time the young doctor had become one of the best known writers in Russia. 

Yet Chekhov always saw himself as a physician, even though in 1889 he did, in fact, retire from a normal paying practice; after that, he offered his medical services at no charge, even though the generous Chekhov often found himself financially strapped. He took care of the peasants near Melikhovo (as depicted in the painting), donated his services to the government as a district physician, and engaged regularly in public health initiatives. In less than five months in 1891, Chekhov reported seeing 453 patients at a district health center and making 576 house calls, in addition to his home practice. (2) Throughout his life, Chekhov also was heavily involved in grass roots activism, building schools for peasants, raising funds to help famine victims, and, later, near the end of his life, supporting the establishment of a sanitarium for tuberculosis victims at Yalta.  

“My Debt To Medicine” 

One of the best known of these public health efforts was his 1890 epidemiological survey of health and social conditions in the prison colonies on Sakhalin Island. Traveling by himself, Chekhov journeyed six weeks by train, steamboat, and horse-drawn carriage across Siberia to reach the 1000-km long Pacific island on which the Czarist government had recently established a notorious gulag. There, he embarked on a one-man, three-month survey of the population, tenaciously picking his way from settlement to settlement and from house to house, often by foot.  

Biographers have long tried to pinpoint his motivation for this perilous journey. During the year prior to the trip, Chekhov had undergone a crisis of confidence. In a letter to Suvorin, he opined, “I don’t love money enough for medicine, and I lack the necessary passion—and therefore talent—for literature. The fire in me burns with an even, lethargic flame; it never flares up or roars… I have very little passion. Add to that the following psychopathic trait: for two years now, seeing my works in print has for some reason given me no pleasure.” (3) He reported symptoms suggestive of clinical depression, perhaps precipitated by grief over the death of his brother Nicholas from tuberculosis. There was also a literary issue. The master of the short story had promised himself that he would create a Tolstoy-like novel that would confirm his status as a serious writer. But he was unable to do so.  

Undoubtedly a major factor for choosing Sakhalin was Chekhov’s desire to pay his debt to medicine. He had recently developed a scientific interest in penology and had read about the dismal conditions in the Siberian gulag. He saw an opportunity to influence this situation by obtaining accurate data on the health status of Sakhalin convicts. He had never completed the research thesis (the equivalent of a Ph.D.) that would make him eligible to be a medical specialist or professor. Hence, his notion of “my debt to medicine”—he would perform a survey, write his thesis, and become a teacher. 

Ultimately, Chekhov claimed to visit every settlement and survey every household on Sakhalin Island, using a 12-item data collection form. He said he completed over 10,000 of these forms in three months, a feat that (if true) qualifies Chekhov as the speediest shoe-leather epidemiologist of all time. After his return to European Russia, the author found it difficult to organize his data into a coherent study. While he had planned to write a strictly scientific monograph, his creative spirit struggled with the limitations of science. What about his personal experience? What about the interesting stories? After struggling for years, in 1895 Chekhov published The Island of Sakhalin, a curious (but engrossing) mixture of journal, geography, history, medicine, statistics, and travelogue. (4) Unfortunately, the faculty of the University of Moscow was unimpressed.  

“As I Grow Older, the Pulse of Life in Me Beats Faster” 

Picture the mature Chekhov—a middle-aged bachelor, longish face, rather neatly trimmed beard, a prince-nez clipped to the bridge of his nose. His household included his aging parents and his sister Masha, an unmarried schoolteacher who had become his confidant and secretary. His three surviving brothers looked to him for guidance and financial help. Anton was popular, witty, and generous. Among the guests at Melikhovo, there were frequently female admirers. Chekhov’s encounters with women were flirtatious and obviously enjoyable. He had teasing, sexually charged relationships with several women, but whether any of these liaisons are actually “affairs” is uncertain.  

The doctor in the painting already suffered from the tuberculosis from which he would die at the age of 44 years. In fact, he first coughed blood as a medical student. Yet, Chekhov dismissed that episode and each subsequent episode that occurred with disheartening regularity as “influenza” or “bronchitis,” steadfastly refusing to label himself consumptive. As a physician Chekhov must surely have understood the meaning of his symptoms. Was his denial simply a face to show others? Or was his denial so great that it made him unaware? The cat finally came out of the bag in early 1897. While dining at a restaurant in Moscow, Chekhov had a violent spell of hemoptysis that left him critically ill. For the first time, he sought medical treatment and entered the clinic run by Dr. Ostropov, one of his medical school professors. Chekhov’s chronic illness progressively worsened. At the insistence of his doctors, Chekhov left his beloved Melikhovo after 1898 and lived mostly at a new home in the sunny Black Sea resort of Yalta. 

It was also during these last years that the bachelor writer courted and married Olga Knipper, an actress with the Moscow Theater Arts Company. Even after their marriage in 1901, Olga remained at work in Moscow during much of the year, while the invalid Chekhov lived in Yalta, theirs being perhaps one of the earliest examples of the modern two-career commuter marriage. Chekhov found himself able to devote less and less of his waning energy to writing, especially since he refused to give up his social and philanthropic activities. Nonetheless, between 1898 and his death in 1904 Chekhov completed some of his greatest work, including several stories, two novellas (“Peasants” and “In the Ravine”), and his last plays, The Three Sisters (1900) and The Cherry Orchard (1903).  

COLD EYE, WARM HEART 

Chekhov’s Doctors 

Several characteristics of Chekhov’s work reveal the influence of medical training and practice. He used clinical knowledge to lend accuracy to his descriptions of disease and medical situations. This characteristic is perhaps most clearly seen in the characterization of mental disorders. For example, the title character in Ivanov is a subtle portrait of a man suffering from clinical depression, who eventually commits suicide. The young heiress in “A Doctor’s Visit” presents symptoms we would now label as generalized anxiety or panic disorder. The title character in Uncle Vanya appears to have a neurotic depression, a condition that meets today’s DSM 5 criteria for Persistent Depressive Disorder. In the peculiar story called “The Black Monk,” Chekhov describes a psychotic condition, presumably schizophrenia.  

Chekhov also drew from his medical experience in creating a multitude of physician characters. Doctors play significant roles in nearly 30 stories and in all of his major plays, except The Cherry Orchard. The author’s sensibility as a medical insider gives insight and poignancy to these characters, who range from committed altruists to lazy bureaucrats to burned out cases. Chekhov knew too much about the contemporary state of medical science to portray his doctors as curing many people. Thus, they often appear impotent. Yet, at their best Chekhov’s doctors convey the seamless fabric of tenderness (compassion) and steadiness (detachment) that lies at the heart of good medical practice. They also demonstrate courage, altruism, and self-effacement. For example, in “The Grasshopper” (1892) Dr. Dymov dies as a result of contracting diphtheria from a patient. Dr. Kirilov in “Enemies” (1887) demonstrates extraordinary devotion to duty by leaving his distraught wife and dead son in order to make an emergency house call.  

Perhaps Chekhov’s most textured portrait of a good physician appears in “A Doctor’s Visit” (1898). The protagonist, Korolyov, is a young doctor substituting for his boss, the professor of medicine. During the course of the story he moves from being a careful observer (detached concern) who ascertains that his young patient has nothing wrong but a “case of nerves,” to making an imaginative leap by which he connects more deeply with her. This empathic connection allows him to relieve some of her suffering by re-framing her illness. While he cannot solve her existential problems, his demonstration of solidarity leads her to trust him and to gain insight. Korolyov is like Chekhov himself. Dr. Pavel Archangelsky, who supervised Chekhov’s first job as a physician, captured the author’s ability to listen carefully when he later commented: “… he did everything with attention and a manifest love of what he was doing, especially toward the patients who passed through his hands. He listened quietly to them, never raising his voice, however tired he was and even if the patient was talking about things quite irrelevant to his illness.” (5)  

At the other end of the spectrum, some of Chekhov’s doctors are insensitive, incompetent, or impaired. Mayer, the callous medical student in “A Nervous Breakdown” (1889) is a disaster. Mayer can rattle off statistics on the number of whores in London and Moscow, but he is unable to “see” (empathize with) the suffering of the living-and-breathing whores he encounters. Shelestov in “Intrigues” (1883) and the public health doctor in “Darkness” (1887) are examples of self-centered physicians a little further along in their professional lives. The former is superficial and pompous; the latter is narrow-minded and detached.  

Chekhov’s most complete insensitive and acquisitive social climber is found in “Ionych” (1898). Dr. Startsev, when the reader first meets him, is a young physician setting up practice in a provincial town. After surviving an unrequited infatuation with the daughter of a wealthy townsman, Startsev devotes himself entirely to work. His practice prospers and he branches out into real estate. As he grows corpulent and wealthy, Startsev loses touch with his patients (and his own humanity): 

“Probably because his throat is covered with rolls of fat, his voice has changed; it has become thin and sharp. His temper has changed, too; he has become ill humored and irritable. When he sees his patients, he is usually out of temper; he impatiently taps the floor with his stick, and shouts in his disagreeable voice: ‘Be so good as to confine yourself to answering my questions! Don’t talk so much!’” (6) 

“Ionych” traces the progressive destruction of a medical practitioner who finds that medical affluence is more to his liking than the emotionally and physically difficult path of medical virtue.  

Some of Chekhov’s most interesting doctors are tortured by existential or spiritual conflict. Chekhov accurately depicted professional burnout, a syndrome characterized by depletion, detachment, depersonalization, denial, and depression. (7) Dr. Kirilov, who chooses to “go to the office” instead of mourning with his wife, may illustrate the relatively early phase of emotional detachment. Dr. Ovchinnikov in “An Awkward Business” (1888) demonstrates the more advanced symptom of depersonalization when he slugs his assistant in response to the man’s incompetence. The overworked Ovchinnikov reacts to his personal depletion by objectifying and dehumanizing his assistant, a response that compromises the medical care he is trying to protect. Chebutykin in The Three Sisters (1900) illustrates the extreme of alcoholism. Though still employed as a military physician, Chebutykin convincingly asserts that he has forgotten all the medicine he ever learned.   

Ragin in “Ward #6” (1892) and Nikolai Stepanovich in “A Dreary Story” (1889) are complex characters in whom depression and burnout are superimposed on a deep sense of existential failure. Like many of Chekhov’s characters, these physicians suffer from a lack of self-knowledge; they move through life relying on one form of self-deception or another. When they were younger, they committed themselves to noble ideals—Stepanovich to teaching and Ragin to practice in a provincial hospital. But in the long run they never “found” themselves. Professor Stepanovich yearns for a unifying moral principle that would knit together the fragments of his life. Dr. Ragin experiences his failure as emotional numbness. He yearns to suffer, assuming that if he experienced pain, he would be freed from his inability to feel. Thus, the academic physician pines for salvation in the cognitive sphere; the practitioner yearns for emotional redemption. In each case the focus remains inward, rather than turning outward to others, in whom salvation might actually be found.  

Medical Sensibility 

Medical attitudes and methodology play a larger role in Chekhov’s work than does medical knowledge. He believed that his duty as a writer was to present his observations clearly and accurately; in other words, to lay out the data in an objective fashion and allow readers to reach their own conclusions, rather than providing an author’s interpretation. He wrote, “The artist should not be a judge of his characters and what they say, but only an objective observer.” (8) 

This objective attitude put him in conflict with most other Russian writers of the time. It was a major source of conflict with Tolstoy, who was widely revered at the time as a living saint. The two men enjoyed a close personal bond but approached writing with radically different philosophies. After his mid-life religious conversion, Tolstoy viewed literature as a way to communicate his moral vision. He preached the gospel of a radical Christianity, in which all men work together to achieve economic and social equality. However, he rejected the concept of material progress and was particularly skeptical of medicine and doctors. Chekhov, on the other hand, strove to be objective, to present people as they are and the world as it is. His medical training taught him to be a careful observer; his medical attitude made him leery of judging others.  

Other Russian writers and intellectuals spoke out against the czarist government’s repressive social institutions. While this protest was disguised in various ways in order to satisfy the state censors, late 19^th century Russians (like their 20^th century counterparts) learned to speak and understand a subtle code of insurrection. The intellectuals addressed “big issues”—democracy, education, social revolution. They wrote articles, organized meetings, and gave speeches. Here again, Chekhov found himself on a different wavelength. He rarely engaged in theoretical discussion and did not advocate radical social change. Rather, he preferred a pragmatic, case-based approach. His goals were relatively limited, but achievable. Treat the sick patient. Document and publicize the abysmal condition of prisoners. Contain the cholera epidemic. Provide financial assistance to keep farmers afloat during the famine. Raise money for a new school. On and on, but always specific and personal.  

In “About Love” (1898), the narrator speculates on the essence of love. Are there universal characteristics that identify love wherever it occurs? “What seems to fit one instance doesn’t fit a dozen others,” the narrator concludes. “It’s best to interpret each instance separately in my view, without trying to generalize. We must isolate each individual case, as doctors say.” (9) Indeed, Chekhov’s stories and plays rigorously follow this dictum. While many of his Russian contemporaries used fiction to advance moral or social theories, Dr. Chekhov focused on the complexities of human interaction. In Chekhov’s world, biology and circumstance constrain freedom. People often do not listen. Acts performed with good intentions frequently result in hurtful outcomes. And yet occasionally and in unexpected places, one finds a glimmer of love, courage, spirituality, or healing. “Never generalize,” Chekhov tells his readers. “Never theorize. Pay attention to the particulars. Focus on the concrete.” In this respect, the 19^th century physician-storyteller presages the 20^th century physician-poet, William Carlos Williams, who coined the aphorism, “No ideas but in things.”  

In the long run, Chekhov’s objectivity and aversion to theory played a major role in the development of modern literature, as 20^th century writers followed Chekhov in attempting to describe the world of human character and relationship objectively, and allowing that world to speak for itself. To the extent that Chekhov’s “lawful wedded wife” contributed to his sensitivity, skills, and attitudes, perhaps medical education and practice played an unanticipated role in the history of literature, his delightful “mistress.” 

Adapted in part from Coulehan J. (Ed.) Chekhov’s Doctors, Kent State University Press,  2003

Sir Luke Fildes’ “The Doctor,” is in the Tate: File:The Doctor Luke Fildes crop.jpg – Wikimedia Commons 

Portrait of Chekhov: File: Chekhov 1898 by Osip Braz.jpg – Wikimedia Commons 

REFERENCES 
1, Chekhov A. The Selected Letters of Anton Chekhov, translated by Sidonie Lederer, New York, The Ecco Press, 1984, p.  
2, Coope J. Doctor Chekhov. A Study in Literature and Medicine, Chale, Isle of Wight, Cross Publishing, 1997, p.  
3, Chekhov A. The Selected Letters of Anton Chekhov, translated by Sidonie Lederer, New York, The Ecco Press, 1984, p. 81. 
4, Chekhov A. A Journey to Sakhalin, translated by Brian Reeve, Cambridge, Ian Faulkner Publishing, 1993.  
5, Coope J. Doctor Chekhov. A Study in Literature and Medicine, Chale, Isle of Wight, Cross Publishing, 1997, p. 27. 
6, Chekhov A. Ionych. In: The Tales of Chekhov. Volume 3, translated by Constance Garnett, New York, The Ecco Press, 1972, p. 91. 
7, Coulehan JL. Being a Physician. In: Mengel MB, Holleman WL (Eds.) Fundamentals of Clinical Practice. A Textbook on the Patient, Doctor, and Society, New York, Plenum Medical Books Company, 1997, pp. 73-101. 
8, Chekhov A. The Selected Letters of Anton Chekhov, translated by Sidonie Lederer, New York, The Ecco Press, 1984, p. 54. 
9, Chekhov A. About love. In: The Tales of Chekhov. Volume 5, translated by Constance Garnett, New York, The Ecco Press, 1972, p. 290.

Reviews of Chekhov’s Stories

Cold Eye, Warm Heart: Medicine and Anton Chekhov  

Aug 6, 2025 6286

An Awkward Business by Anton Chekhov 

Jun 11, 2025 1431

The Grasshopper by Anton Chekhov

May 11, 2025 1252

Ionych by Anton Chekhov 

Mar 11, 2025 2065

A Doctor’s Visit  by Anton Chekhov 

Mar 11, 2025 1730

Ward No. 6 by Anton Chekhov

Mar 11, 2025 3245

A Nervous Breakdown by Anton Chekhov 

Feb 11, 2025 1477

Enemies by Anton Chekhov

Jan 11, 2025 1566

Painting an Ideal: Luke Fildes’ The Doctor with Hannah Darvin

Dec 28, 2024 1228

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

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/

JC: Well, it’s great to see you, Alan, and thank you for agreeing to this interview. It’s been a long time since I saw you in person. I remember when we first met in 1992 at the Society of Teachers of Family Medicine meeting in San Diego. It was at a poetry reading, and we were both presenting our work there.

I’d like to begin by quoting an article that I saw in the Amherst student magazine from 2008. You had just received an honorary doctorate of science there. It goes like this, “AB’s combination of his education, his love of art, his passion for medicine and his wonderful sense of humor have made him a great warrior in the fight against smoking. Dr SmokeBuster offers an alternate view in the seemingly strict discipline of medicine. He embodies the philosophy of the liberal arts, using a variety of disciplines to communicate his message. Most importantly, AB brings poetry and artistic splendor to the often overly calculated role of science.”

I think that really describes your ability to merge your love of the arts and humanities with humor and your passion for medicine, as well as your public health activism and your career-long campaign against cigarette smoking. So how do you look at that? How do you view those interdigitating components?

AB: First of all, this is so unbelievable. If you told me that when I was struggling to figure out what to do in life, that I’d be interviewed by Jack Coulehan, I’m just really appreciative that you would take the time to do this.

I had great fortune in my upbringing and growing up on the periphery of New York City.

It was really a marvelous time. I thought New York City was where moms took their kids to go to see plays and museums on weekends. I didn’t realize people actually live there. Where I was born, at Rockaway Beach Hospital in New York, you could see the ocean from the hospital. My father, Leon Blum, MD, was an intern there and then a member of the medical staff. He was a general practitioner for 37 years in the very town in which he’d been raised, Rockaway Beach. And that’s where Jonas Salk spent his summers. And Burrill Crohn was from there, of Crohn’s disease fame. So it has a rich heritage. I grew up in a low middle income community, nearby Far Rockaway, where my father, Leon Blum, MD, knew everybody.

My dad was very literary. He would do the Sunday New York Times crossword puzzle, which I could never do. And I had great opportunities to experience culture. Of course, I thought museums were mostly about dinosaurs. I never realized that there were art museums. That was the awakening I got when I went to my first National Conference of Family Practice Residents meeting in Kansas City.

It was pretty boring. So I started walking around Alameda Plaza, and I came across this beautiful building that looked like a Greek temple, and it turned out to be the Nelson Gallery. And that was really my awakening in art.

JC: And you also had an early commitment to activism. It’s remarkable that even as a resident in the late 1970s at the University of Miami, you had already begun, kind of this dual career as a regular practicing physician and as a family practice resident, you organized a campaign against smoking and other unhealthy habits among adolescents. What was the origin of the idea for the Doctors Ought to Care movement?

AB: I think everything I’ve ever done is irony and humor, and even the title of my undergraduate thesis on Robert Frost was called “The Way of Understanding is Partly Mirth” (from a line of one of his poems). I don’t think I would have been able to get through being fired a couple of times, not getting into this or that school, not getting this or that job, missing the deadlines for exams that I had to take, and so forth had I not had a sense of humor.

I was about a 7-year-old watching Brooklyn Dodgers games on TV with my father in the afternoons when he would rest after his 9 am-to-noon and 1 pm-to-4 pm clinic before his after-dinner office hours in our house, where the living room became the waiting room. We loved the Dodgers, and one day he said, “Look at that Lucky Strike commercial. Why don’t you take out our tape recorder and record it, because one day nobody’s going to believe that they would associate sports and cigarettes.” And sure enough, it only got worse as the decades went by. Meanwhile, I had begun an interest in smoking because my father had had a heart attack in his 40s, when I was 5 years old. He started smoking Chesterfields as a medical student and continued through his service in the Army in World War II in New Guinea. It just stuck with me that when and if I ever got to medical school, I’d learn a lot more about that. I never did. Only about 30 minutes of education at Emory was devoted to smoking, and it was a part of a lecture on lung diseases by Dr Brigitte Nahmias. She juxtaposed ads for cigarettes next to pictures of her patients with occupational lung disease and some who smoked. I thought that was a good way to demonstrate the contrast between the macho men in the cigarette ads and the wrecks that she cared for. So with the help of a pathology professor at Emory, I decided to create my own slide presentation of all the smoking-related diseases. By the time I was in my residency, I began speaking in elementary, middle schools, and high schools to try to talk to kids about not taking up smoking and other killer lifestyles that were being promoted to them in the mass media.

At a meeting of the National Conference of Family Practice Residents in Kansas City in 1977, I tried to share this work with the other attendees but was initially rebuffed. I was finally given a room after the main proceedings ended. It was filled to overflowing. Over 50 people came, and one of them was Rick Richards from South Carolina, who told me “You know, I’m going to go back to Spartanburg and do the same thing you do, and I’ll see you next year.” Well, by that next year, we’d organized several chapters, and we were asked to give the main talk at the conference. So DOC, or Doctors Ought to Care, became known for not just lecturing on the dangers of smoking, but also for ridiculing, satirizing and parodying cigarette advertising and the way in which the tobacco companies were getting away with murder. We were the first and only physician organization to confront the tobacco industry itself, and not just angrily, but using humor and MAD Magazine-style satire such as the Barfboro Man and the Emphysema Slims tennis team. These were some of the things that we created when the American Cancer Society was saying, “Oh no, no, you can’t do that. You’re going to get sued.” Well, we were sued, and that only brought more attention to us. We did a t-shirt parody of Miller Lite Beer, whose original slogan was, “Miller Lite. We’re having a party.” Our slogan had a guy with his arm around a toilet saying, “Killer Lite. I’m grabbing a potty.” Miller Brewing, which was owned by Philip Morris at the time, sued us in state and federal court. We won the case, but it was no fun being involved in litigation with the world’s largest cigarette company.

JC: That makes me want to jump ahead to some of the exhibitions in the Center for the Study of Tobacco and Society. I was reviewing the website last week and the whole thing is so impressive, but the humor and the irony in the titles and the text of some of your exhibitions is amazing.

So to get into that, let’s move to the beginning. I believe it was 1997 when you began the Institute for the Study of Tobacco and Society at the University of Alabama, let’s go back to Doctor Ought to Care.

Alan: DOC was started in 1977. I was in internal medicine after my graduation from Emory, and I loved my internship at McGill’s Royal Victoria Hospital in Montreal, but I kept on running into family practice residents at Montreal Jewish Hospital who seemed to be loving their experiences even more than I was. So when I was on vacation in Miami, I thought why not look up family medicine?

I walked into the Department of Family Medicine at Jackson Memorial Hospital of the University of Miami, and there was Irwin Redlener, who was actually a pediatrician. Irwin was filling in at the request of the chairman Lynn Carmichael. It turns out that this was the first family medicine residency in the United States. Lynn also helped found the Society of Teachers of Family Medicine and became the first editor of its journal Family Medicine. The residency had features found in few other training programs of that era such as sports medicine, podiatry, integrative medicine, pastoral care, an annual symposium on sexuality, extensive community outreach, a resident-run evening clinic, and a monthly book group to discuss The Person: His and Her Development Through the Life Cycle by Theodore Lidz. It was just amazing timing for me, and I never looked back.

Lynn tolerated me pretty well for my activism on tobacco after initially chastising me for trying to convince his secretary to stop smoking. He eventually admired what I was trying to do, which was to bring our knowledge about health into the community to try to make up for the health and socioeconomic disparities in the neighborhoods around the inner-city hospital.

Dr. Richards and I were soon joined by another family physician, Dr. Tom Houston, and through the National Conference of Family Medicine Residents we were able to disseminate our activist approach to tackling the killer habits. In the 1980s we wound up having close to 100 chapters of

DOC in medical schools and family medicine residency programs, some of which still exist. Our approach was to use humor and satire, as opposed to all the staid organizations like the American Cancer Society, the American Heart Association, and the American Lung Association, which still relied on pamphlets, posters, and unpaid public service ads on TV that usually aired at 3 in the morning. DOC was the first health group to purchase counter-advertising space on billboards, bus benches, TV, and radio. No one else had ever done that. We were also the first to involve teenagers in our work and to tap the highest level of creativity and commitment of every family physician we could find. In 1978, I co-hosted a conference with a junior high school student that was attended by 150 students from 30 schools in South Florida to train them to help raise the awareness of their peers about the targeting of young people by the purveyors of cigarettes, alcohol, and junk food.

Flash forward to 1997 when I was on the faculty at Baylor College of Medicine. I was invited to give the family medicine residency graduation address at Tuscaloosa. I shared my sketches and stories of patients and also gave a grand rounds on the physician’s role in ending the tobacco pandemic.

Afterwards, the chairman, Jerry McKnight, asked me if I wanted to stick around. I thought he meant going for a beer, but he wanted me to apply for a new endowed chair position in family medicine.

When I moved to Alabama two years later, I started the Center for the Study of Tobacco and Society. DOC was still going, but I also wanted to do something different such as researching the history of smoking and efforts to counteract it.

I began to organize the vast amount of material that I had amassed over the years through what I called a daily biopsy of the smoking pandemic – the largest collection on the tobacco industry, cigarette marketing, and anti-smoking advocacy at any university. This was all pre-internet and pre-ebay. I had tens of thousands of items, and the University of Alabama was kind enough to provide some space. I thought of this as both a museum and an archive, and for the next 15 years I hired graduate students from the School of Library and Information Studies to start cataloguing the collection.

The main work product of the Center is exhibitions. We began with an exhibition at the annual convention of the Association of American Editorial Cartoonists called “Cartoonists Take Up Smoking!” It took ten years to research and involved acquiring over 300 original artworks from the nation’s newspaper editorial cartoonists. The exhibition then went to the National Museum of Health and Medicine in Washington for a year and traveled to ten other venues. So we had a great opportunity to share our work, but then it dawned on me in 2015 to do online exhibitions to reach a much larger audience. We’ve now done nearly 40 exhibitions, and I’ve never looked back.

JC: And I think that that those online exhibitions, each of them, seems to be a massive enterprise with so much richness in the visual material, in your text, comments and so forth. It’s remarkable that you have been able to collect this much essentially social history and curate it in such innovative ways.

Alan: Well, here comes the trigger warning, because I do this mostly for me, partly because. I don’t think most people understand the smoking issue. I really don’t. I don’t think there’s much to cheer about, in spite of the progress that we’ve made in reducing adult smoking from over 40% in 1964 to less than 15% today. Just this year, an investigative report was released about how low-tar cigarettes are bigger than ever in China, because they’re still pushing the absurdly fraudulent notion that there can be a safer cigarette. Even the Journal of the American Medical Association bought into this for awhile back in the 1970s. It’s such a tragic history in this country that I cringe whenever I hear public health people saying that the reduction in cigarette smoking is the greatest public health triumph of the 20th century. Not at all. In my opinion, it’s just the opposite. 

We learned everything we needed to know about smoking by 1964 when the Surgeon General’s report came out. My dad taught me everything I think I needed to know when I was much younger than that. I wrote my first article on smoking when I was editor of my high school newspaper, The Woodmere Academy ECHO. And I think I’m the longest running individual on this issue, because I’ve been doing this with a passion for over 60 years – – fortunately, I haven’t had to earn my living from my anti-smoking work. And that’s where my trigger warning comes in, because it’s hard to imagine how thoroughly the field has been professionalized. You have to have a Master of Public Health or a Doctor of Public Health degree to get a job in it, as compared to the hundreds of grassroots activists from all walks of life across the country who led the way for decades in passing local clean indoor air laws. And guess what it’s called now: “Tobacco Control.” Of course, it’s not about controlling tobacco. It’s about curbing smoking and its promotion. This issue is something that medicine hadn’t addressed before, because unlike an infectious disease it’s a human behavior that’s taught to us by an industry that’s making an enormous profit. So I believe my contribution was to shift the focus away from lung cancer and smokers and instead onto Marlboro and the people in the tobacco industry who promote it. I think that was an exponential leap from where we were before then.

There were quite a few health care professionals who were opposed to smoking. Thoracic surgeons Alton Ochsner and Michael DeBakey were warning that cigarette smoking caused lung cancer beginning in the late-1930s. For their trouble, they were ridiculed by the medical profession. Organized medicine didn’t want anything to do with fighting smoking. (For one thing, their medical journals accepted lucrative cigarette advertising revenue until well into the 1950s; for another, two-thirds of physicians in the 1940s smoked.) So what I think we did in DOC was to shift the focus to monitoring the tactics of the tobacco industry. Our strategy gave permission for everybody else to point the finger at the industry as the source of the problem. But the federal government never devoted any funding to fight smoking, and there was relatively little effort. So leading the way was that band of people who hated going into restaurants or getting on airplanes and breathing tobacco smoke. It was that activist group of people– – not the public health people, not the physicians – – who started the nonsmokers’ rights movement. And then there was a guy like me who was looking at the advertising and promotion of tobacco products. But most of those working in this field today are focused on regulation and legislation, even in this non-legislative era. Then there are the full-time smoking cessation researchers, who are practically studying nicotine receptors on toenails rather than looking at the larger picture. They’ve medicalized and “pharmacologicalized” smoking cessation. As a result, physicians no longer take an extra minute or so to encourage their patients to stop smoking. They just prescribe a drug. And I don’t think that most people in tobacco control are looking at the fact that we could have done so much more in these 60 years. For example, the first time the government ever spent a penny on paid advertising to fight smoking was in 2012.

In 1998, the state attorneys general forged a $206 billion settlement with the tobacco industry which sounded great. But although most of that money was supposed to go to fight smoking, only 2% of that has been allocated by state legislatures for tobacco use prevention and cessation. It’s all about the money.

JC: It’s all about the money.

Alan: An internist colleague, Ed Anselm, made this marvelous comment, “The most addictive thing about tobacco is money.” And he wasn’t just talking about the tobacco industry, but also about the people who say they’re fighting smoking but are really just fighting over the grants to write policy papers telling legislators what to do about smoking.

It’s a dark field.

JC: It sounds, from what you’re saying, you know, the image I have is Socrates, as a gadfly in Athens talking about the gods and so forth, and his questions threatening the status quo. One thing has improved though, you haven’t been convicted. You haven’t had to take the hemlock.

Alan: No, I was arrested, though. I’ve been arrested a couple of times for demonstrating (but never charged), once with a city councilman in Houston when we went to the Astrodome to protest a Cinco de Mayo festival sponsored by RJ Reynolds’ Camel cigarettes. Let me just give you an example of the absurdities I’ve experienced: I was fired as editor of the New York State Journal of Medicine after three years, having produced the first theme issues on smoking at any medical journal, and which brought national attention to the Journal. As editor, I had to attend the monthly board meetings of the of the Medical Society of the State of New York (MSSNY), which published the Journal. To paraphrase the Borscht Belt comedian Henny Youngman, the average age of the board members was deceased. I was about 20 years younger than the next youngest person in the room, and all they were talking about were economic matters like the high cost of malpractice insurance. It was not at all about health and medicine and helping people, in my opinion. But I’m grateful to MSSNY for having had the opportunity to do these theme issues on tobacco problems. Following the second one, though, I was fired for having spent too much time on smoking.

JC: I think we can agree that that money talks, and we lived in the mid-20th century in a culture in which smoking was not only acceptable, but it was really highly touted. For example, most doctors smoked Camels, but on the other hand, don’t you feel that that your campaigning, and your creativity has contributed to cultural change, even though it’s been at a slow pace?

Alan: I did a teaching fellowship in family medicine at the University of Miami after graduating from the residency program. And what I learned was how to give a good presentation and how to write learning objectives. These skills may seem simple, but that’s deceptive. First, there is the cognitive objective (imparting information), which 99% of lecturers think is the entire lesson they are supposed to teach. Then there’s the behavioral objective, which can teach learners how to do a procedure or demonstrate a skill. But what they’re missing, I think, is the attitudinal objective. I came away from that fellowship understanding that every presentation, every paper, every research poster I would ever do would have the reader, viewer, or the listener going away saying, “Gee, I never thought about it like that before.” That’s an attitudinal objective. I wanted to change the way people looked at an issue.

It’s something that stays with me every time I advise a resident on giving a presentation. I also do this in my exhibitions on tobacco in the hope that the viewer can see the ironies and learn the lessons from decades of foot-dragging by organized medicine, the public health community, and academia – and their fear of confronting the tobacco industry – that can be applied to tackling other challenging health problems such as gun violence, obesity, emerging and re-emerging viral diseases, and digital media addiction. There are many ways we can look at the smoking issue. Our failure to address it for so many decades is a metaphor for how we’re dealing with the wired epidemic of kids having the attention span of a fig.

JC: In 1964 when the Surgeon General came out with his first report, I believe 45% of adults in the US smoked, and now it’s approximately 11%, and the images that you have in your in your exhibitions show how trendy and culturally appropriate smoking was at that time. Now, you have to admit that there is a significant cultural awareness that smoking isn’t the thing to do, and that at least if you do smoke, you have to go out to the back, and you can’t smoke here or there, and there’s a certain kind of negativity against it. I consider that a cultural change. And of course, all of the tobacco corporations have had the time over those 60 years or so, to adapt to these new conditions and to spread their tentacles elsewhere. But it seems to me, it does constitute a change.

Alan: Jack, we look at our time now as an age of disinformation and regression, and dare I say, the word “retribution,” because we have willful ignorance that I haven’t seen in my lifetime. I lined up at my school in Woodmere, Long Island, to get my polio vaccine as a five-year-old. I was in the original Polio Pioneer trials. We have people today who are saying they’re “doing their own research” as to why they won’t get a Covid vaccination that has saved millions of lives even though these vaccines were developed in record time, thanks to our knowledge of previous epidemics, especially SARS in the early 2000s. Most of the time developing the vaccine for Covid was taken up with the trial, not with the development of the vaccine.

I think the missing element today in countering this horror is humor, and that’s why I like to think that MAD Magazine was my leading medical journal for many decades. I actually got to meet the editors and the publishers of MAD because I wrote a letter to publisher Bill Gaines and editor Al Feldstein when I was editor of the New York State Journal of Medicine. I asked, “Why don’t you resurrect those great parodies of Marlboro and other cigarette brands?” And they invited me to have lunch with them in New York City? It was fun. And they then resumed doing those parodies.

I had a lot of other influences growing up. On the radio, Jean Shepherd (best known as the author and narrator of “A Christmas Story”) was kind of every adolescent’s hero. Every night, he would tell stories of his time growing up in Indiana, and I think that’s how I got a lot of my storytelling ability.

And reading newspapers. I would often buy all nine New York dailies on a Saturday just to see the different sportswriters’ take on the Dodger games and to see the sports cartoons by Willard Mullen in the World-Telegram & Sun. Some of these were resurrected in my exhibition, “Cartoonists Take Up Smoking!” .Also, I was a magician growing up doing birthday parties and school assemblies, inspired by my father who would do little tricks for his patients. I really loved that. Once I even got to open for pianist Peter Nero at the Rheingold Music Festival in Central Park. I wasn’t very good that night, but I still get to say I performed for 3000 people.

JC: Well, it’s clear that we take ourselves too seriously. We’ve lost the ability to look at ourselves and our culture with that kind of ironic distance. And in addition to that, when you were talking about the development of the Covid vaccine, the disinformation, to me, seems to be a malignant outgrowth of some of the technologies that we’ve developed and we’ve made accessible to the world, and the ability of people to spread disinformation with such great facility and power.

Alan: I think that we need to match the reality of the society that we’re living in with the strategies to counteract it, and I don’t think we’re doing that. We’re too ideologically split, and I don’t know where common sense has gone. I don’t think the media have risen to the occasion. Our newspapers are gone. I don’t do social media. But I just am horrified. I used to think I wasn’t very literate because I looked at all my fellow English majors, like you, Jack. They were omnivorous. I did pretty well, but I just never felt that I was that knowledgeable about poetry and literature. And I see now that I was pretty good compared to what people are spending their time doing today. There are no humanities to speak of in medical schools, except for the honors courses for the self- selected students who are already interested in humanities, and you and I have spoken about the fact that out of 22,000 entering medical students today only around 500 majored in a non-STEM field. It’s mind-boggling. It’s terrible.

JC: That brings up a point I’ve been meaning to take up in this interview, and that is, we’re both medical school professors. I’m emeritus. You’re still active. In my career, I have tried to imbue in students a love of humanities, the use of the arts and humanities to develop empathy, to develop reflectiveness and resilience. And of course, I’ve gotten a lot of feedback on that, or blowback, I guess I should say, because people say, well, that’s not going to work. It doesn’t matter. These guys are going out into a different medical world in which they are going to be subjected to stresses, to constraints and so forth. So even if they go into this with that kind of humanistic perspective, they won’t be able to effectuate it in their practice. And of course, having looked back on my career, it’s kind of difficult to hear that. I’m not sure that I believe it, but I wonder what your thoughts are on that matter.

Alan: Ann Walling has an excellent review article on ageism in the July 2024 issue of American Family Physician. She compiled a checklist of questions to ask an older person. She wrote it because she was struck by many of her older patients telling her how they did not feel respected by some of the younger physicians. But I noticed she didn’t include “How do you spend your time?” or “What was your occupation?” A person’s identity is paramount. I don’t think they consider their identity is being a patient.

I find that students are trained to be good mechanics about diseases, and that they can look up anything about diseases and how to treat them. But that doesn’t involve reading things that aren’t only related to the patient you’re addressing at that moment, and that doesn’t involve pleasure reading.

My point is that we no longer live, if we ever did, in the same neighborhood as our patients. We are in not just an ivory tower, but it’s got a moat around it, and they have to come to us. So I ask every resident, “How did the patient get here today?” And you know, after the first 20 or 30 eyerolls they realize it’s relevant. Or, “Who’s at home?” Many residents initially say, “That’s too personal.” This is family medicine that I’m talking about, and they’re saying to me that just asking who’s at home is too personal, or asking about the father when a newborn is brought in by the mother or grandmother or great-grandmother for a well-child visit is too personal.

You couldn’t get any further from my father’s education at Downstate in the 1930’s (when it was Long Island College of Medicine). He would walk two to three blocks to make house calls or even deliver babies. I may be romanticizing, but I think we’ve moved so far away from them, the patients, that now it’s all about us.

When I was a new faculty member at Baylor I didn’t know anything about Houston, so I started exploring the city. I began in January. By July, I proposed doing a community field trip for the incoming interns and new faculty. I chartered a school bus and took them to a Black radio station, an art museum, the city desk of one of the two daily newspapers, the county health department, the city council, the jail, and the criminal court. I did this for 12 years. I’d change the itinerary a little bit, and the only requirement was that they would write a reflective statement. When the residents were getting their exit interview from residency after three years, the community field trip – – that one day that they had as interns – – was one of the highest rated activities.

I think it’s so important to recognize with humility that we don’t know very much about our patients anymore. I’ll give you one quick example. I was attending in an ICU at Baylor and one of the residents was rattling off endless laboratory results. The patient was intubated, so we couldn’t talk to him. Finally, I just said, “Who is this patient? You’ve told me every laboratory result known to mankind, but you’ve never said a word about who he is.” Tomorrow morning, tell me who he is.” And I walked away, I was so angry.

And the next morning the resident excitedly said, “You wouldn’t believe who this guy is. He’s the architect who designed this hospital!” I mean, he was absolutely incredulous. And it wasn’t anything great that I’d said, other than to stop presenting people as numbers. Stop talking about people as “diabetics.” Just say, “the patient with diabetes.” It doesn’t take that much of a leap to talk about people with a disease, rather than who they are as a disease. And again, I’m not the first to suggest this, but it’s also astounding that we can’t dissuade residents from presenting people by race and gender. Warren Holleman, Marsha Holleman, and Bill Monroe wrote a terrific essay, a critique of how we present and discuss patients, in Literature and Medicine in 1992 called, “Is there a person in this case?”

JC: With regard to the bus trips and the field trips, in 1968 when I was a second year medical student at the University of Pittsburgh, we had a community and preventive medicine course in which weekly or biweekly we would go to nursing homes, to neighborhoods, like the so-called Hill District, which was the African American neighborhood in in Pittsburgh, and so on. What I’m trying to say here is that many of these ideas we’re coming up with and saying this would be something new, were practiced in the past, but have been lost. The other thing has to do with interviewing patients. I wrote an article in the early 1980s in the Annals of Internal Medicine called “Who is the Poor Historian?” And I pointed out that that when you’re interviewing a patient, which of you is the historian? Well, obviously, it’s the doctor who is collecting the data and who is trying to assemble and interpret it as a historian does. So again, this was 30 years ago.

Alan: This is so amazing. We should collect all these. One of my favorites is “well- developed, well-nourished and in no acute distress,” which should only ever be used to describe an infant in the neonatal ICU. Instead, imagine calling a woman “well-developed, well-nourished…” And you see this on every chart. This is what the dopey electronic medical records populate.

We are so beyond reclaiming the medical record. I did a grand rounds a few years ago about scribes. For the past decade, I’ve been privileged to have had an incredible experience with medical scribes. These are mostly pre-med students at the University of Alabama who have been one better than the next. One of them wasn’t even going to go into medicine but I urged her to apply, and she did. It’s a terrific way to help mold their thinking about medicine. I don’t like the idea of shadowing, which is passive, whereas being a medical scribe is a commitment, and it’s not easy. I’ve watched these students closely, and it has been a great joy. I confess that I initially opposed having a scribe, because I thought it was going to violate the patient-physician relationship and confidentiality. But it’s a wonderful experience that I wish we would be able to expand.

It’s absolutely astounding how we’ve become so absorbed in populating medical records with minutiae that very few people read. In auditing records of residents, I look past the templates. I want to read their narrative. I want to see that this was generated by a human being.

JC: My sense is that, as a result of my own experience, what we have done in teaching the human aspects of medicine and providing role models and images of what that could be, is that we have influenced a percentage of young medical students and residents who have been malleable in a way and made them better doctors. And that percentage, I don’t claim that it’s large, but I think it’s a real contribution.

We’ve talked a lot about the difficulties and the disparities and in a sense of atrocities, really, of modern medicine, but I’d like to leave this conversation with a positive note. So I guess I’d like to ask you, Alan, what kind of positive note can we end on from your experience?

Alan: You know, every day I must count my blessings. I give thanks for the opportunity to experience the moments that I get with patients, with residents, with colleagues. I’m

a critic, but I’m also probably the biggest fan of what we do in family medicine. When it was founded as a specialty in 1969, there was a kind of a nostalgia for, and resurrection of, the old general practitioner. So I’m really living at least in some way like my dad lived and appreciating these experiences with people. I don’t think medicine is anything other than that. I admire radiologists, especially those that want to see a picture of the patients that they’re reading the films on. I admire every sub-, sub-, sub- specialist there is, because, gosh, it’s good to know that if you need them, they’ll be there. But what a privilege it is to be able to see people from all generations at any given moment. I never know from one day to the next who I’m going to see, and on a single day about two years ago I actually saw patients of four generations in the same family: great grandmother, grandmother, mother and daughter. So I think that I’m a commercial for family medicine, but I’m not a commercial for making medicine into a disease-oriented, as opposed to a people-oriented, field. I think we can’t get to the diseases until we know who people are.

JC: I agree. I’m not sure we can return to the past or to the more holistic view that we recognize in your father and some of the doctors that I encountered when I was young. But I think we need to keep working and seize any opportunity that presents itself to get our message through. I’d like to thank you for this discussion. We could continue for several hours on these topics, and that would be very interesting, but in the interest of time, we have to conclude now. So thank you.

Alan: And I want to thank you and Lucy for thinking of me in this context. I also would be remiss in not thanking my wife, Doris. We’re going to be celebrating our 49th anniversary (in September 2024) with a few days in the Adirondack Mountains. Also, my three sons, Leon, David, and Sam, my late father and mother, Eric Solberg (my colleague and co-author in DOC for over 25 years), and the many mentors I’ve had: English professor Chick Chickering at Amherst College; cardiologist and poet John Stone at Emory University School of Medicine; Howard Rusk, the pioneering rehabilitation medicine physician in New York; Sam Nixon, a president of the American Academy of Family Physicians; and Bob Rakel, who was the chairman who took a chance on me after I was fired as editor of the New York State Journal of Medicine, even though I hadn’t worked in a hospital or clinic for several years.

I’ve been incredibly fortunate to have all these individuals in my life. There was also Kurt Deuschle, chair of community medicine at Mount Sinai School of Medicine. When I was fired as editor, I called him, looking for a few words of sympathy and encouragement. Instead, Kurt sternly replied, “It’s your own damn fault.” I was crestfallen and speechless. But then he explained, “You got too far away from patients.”

I’ve never forgotten that advice.

Alan Blum, MD, is a family physician and professor of Family Medicine at the College of Community Health Sciences, which also functions as the Tuscaloosa Regional Campus of the University of Alabama School of Medicine. He is the first holder of the Gerald Leon Wallace Endowed Chair in Family Medicine at The University of Alabama College of Community Health Sciences. One of the foremost authorities on tobacco problems, Blum is the director of The University of Alabama Center for the Study of Tobacco and Society, which he established in 1999.

Links
1964 Surgeon General’s Report
University of Alabama Center for the Study of Tobacco and Society
Irwin Redlener’s Bio on Wikipedia
Alan’s stories and sketches of patients 
Alan’s website about an artist who was a patient for over 50 years at the state mental hospital in Tuscaloosa

Intro photos from Covering Cancer? exhibition at Center for the Study of Tobacco and Society