Humanitarian Paul Farmer speaks "On Empathy and Reason"
Following is the text of the address delivered by Paul Farmer at the University of Delaware’s 164th Commencement ceremony on May 25, 2013, in Delaware Stadium.
On Empathy and Reason
Reporting a New Medical Discovery
It’s a pleasure to be at UD on the day you and your families mark the end of your studies here and take your next steps into lives as businessfolk, nurses, economists, physicists, applied mathematicians, physical therapists, teachers, psychologists, fellow anthropologists, et cetera. It’s a pleasure to be here as you begin your first days of freedom before resuming, as some of you will, studies in different and more specialized fields. And then of course some of you are not entirely sure what you’ll be doing or where you’ll be going. To be honest, it’s not that you aren’t “entirely sure” but rather that you have no clue. You lot are about to join, in the eyes of your parents and however briefly, the ranks of the unemployed. But it’s OK (and I say this to the parents): You’ve got that UD diploma.
If you’re worried or disgruntled, you can hardly blame me for the state of our economy. This plausible deniability is one of the advantages of being a commencement speaker who is not a high-ranking official or former titan of Wall Street. Yes, I know you wanted President Obama as your speaker, but he’s busy. Or Joe Biden, but he’s been here, done this. Or Oprah, but she’s doing the Harvard commencement. Or a rock star, but they don’t get up this early. So you get me, an infectious disease doctor and anthropologist who works mostly in far-off places and who is interested, primarily, in the health and well-being of the poorest and most vulnerable, some of them to be found right here in this country.
Many of you have guessed, already, that I will be talking about this very subject, hardly the usual fare in a graduation address. When you do enough of these speeches, especially about difficult topics, you look for inspiration where you can get it. Inspiration isn’t always in ready supply, and so every year at this time I get anxious about writing something new and memorable for a broad audience, a large fraction of which is hoping for the burdensome trifecta of brevity and entertainment and originality (Granted, some care only about the brevity part, as I learned during a dinner supposedly in my honor and for Prof. Hummel and President Zhu. A couple of high-ranking officials, who will go unnamed since they are in close proximity and could be packing heat under their robes, made a few too many brevity jokes).
But there’s no such thing as a stump speech for graduations, a challenge further complicated when the basic topic, if not the stories, is the same each year. Imagine for a minute what health equity might look like for an anthropologist who is also a doctor. Working in places like Haiti and Rwanda and Lesotho and Malawi, and also at a Harvard teaching hospital, reminds me of the social and cultural particularities of each time and place. But the sicknesses we see AIDS, tuberculosis, malaria, road trauma, cancer vary less than you might think. The chest X-rays look the same, as do lab results; the physical examination of these patients is the same from one place to another. The stigmata of malnutrition are grimly similar wherever its cause is not having enough to eat. Even the aspirations of our patients to feel better, the be cured, to be heard, to help friends and family members, to get back to work or to return to school all are often strikingly familiar from place to place. Too many of these aspirations are dashed not only by serious illness but also by poverty. Both need to be attacked.
And so I end up speaking, in every commencement address, about the need for you graduates, and for all of us, to be involved in efforts to make this world a better place. I recently published a book of these speeches and was interviewed two weeks ago by Charlie Rose, a thoughtful fellow with a television show. He liked the book, he said, but also made a rather annoying suggestion for my next commencement speech, which of course happens to be this one today, at UD. “Why don’t you just make it short and say the following: There’s too much unnecessary suffering in the world. Go out and fix it.”
He chuckled at his own joke. Quite a bit.
I squirmed, and offered Mr. Rose and his viewers a nervous reply: “Well, the students would cheer its brevity.” I opened my mouth for an erudite riposte, something about how Lincoln’s most famous speech came in at slightly less than 300 words, but Charlie had moved on.
Dear graduates, I’m afraid I can’t say much of anything in 300 words, which is why I write books and articles rather than tweet my thoughts. So don’t expect the Gettysburg Address. You have, as your speaker, neither a president nor a rock star. But I’d like to think you UD folks wouldn’t have me come all of this way for concision alone. So here’s some good news: I will be making, today, an Important Announcement. “Dare to be first,” as the UD motto goes, and I’ve chosen this very day, your graduation, to announce my discovery and naming of a new disease, which I’ve elected to call EDD. That stands for Empathy Deficit Disorder. I’m also announcing today a cure for EDD, which I will lay out for you and for reporters wishing to cover this breaking news in non-clinical terms by telling a story about the struggle between empathy and reason. This narrative does in fact involve a rock star, and even a couple of presidents and other leaders, among whom EDD has, at times, reached epidemic proportions. Curing EDD among leaders, which many of you will become, will help untold millions whose unnecessary suffering may be averted or cured as long as our efforts are supported by a broad-based coalition of people able to link empathy to reason and action. That’s my diagnosis and here’s my prescription: We need to be part of that coalition. Since I’m the brilliant fellow who first discovered and announced, right here, the cure for Empathy Deficit Disorder, I’m hoping you will “dare to be first” in supporting me today.
A few words first about empathy and reason prior to the story of my remarkable discovery of Empathy Deficit Disorder, a feat sure to be honored with great renown. In the May 20th edition of The New Yorker, Paul Bloom wrote a concise (if not exactly Lincolnesque) essay called “The Baby in the Well.” It’s a critique of our ready rush to empathy as the answer to all the world’s ills, including the ones we so often see in our work. The essay’s title refers to a story I remember well, as will your parents: In 1987, a baby named Jessica McClure fell into a well somewhere in Texas. Bloom goes on to mention similar well-recalled events, from another child who in 1949 fell into some other well, to those without happy endings, such as the 2005 disappearance of a teenager named Natalee Holloway while vacationing in Aruba. “Why,” he asks, “do people respond to these misfortunes and not to others?” Bloom, like many of you here a student of psychology, reviews the works of his colleagues: “The psychologist Paul Slovic points out that, when Holloway disappeared, the story of her plight took up far more television time than the concurrent genocide in Darfur. Each day, more than 10 times the number of people who died in Hurricane Katrina die because of preventable diseases and more than 13 times as many perish from malnutrition.”
Empathy, Bloom concludes, “has some unfortunate features it is parochial, narrow-minded, and innumerate.” As to how the term is innumerate, he makes (for those of you not leaving UD with a degree in applied mathematics) the following point: “The number of victims hardly matters there’s little psychological difference between hearing about the suffering of 5,000 and that of 500,000. Imagine reading that 2,000 people just died in an earthquake in a remote country, and then discovering that the actual number of deaths was 20,000. Do you now feel 10 times worse? To the extent that we recognize the numbers as significant, it’s because of reason, not empathy.” The essayist concludes as follows: “Our best hope for the future is not to get people to think of all humanity as family that’s impossible. It lies, instead, in an appreciation of the fact that, even if we don’t empathize with distant strangers, their lives have the same value of the lives of those we love.”
I went back and read the essay again yesterday, since I so often rely on empathy and work in such “remote” countries, including one not so remote from Delaware in which a recent earthquake took more than 200,000 lives. Bloom’s tone may be grumpy and I’m not saying that because he’s a professor at Yale but I get his point: Empathy is not only innumerate but also an “unstable emotion,” like pity or mercy or compassion. But can unstable emotions like empathy and compassion be transformed into something more enduring? Can a spark of empathy once ignited however briefly, however tenuously lead to reasoned decisions and to compassionate policies that might transform our world, including the precincts in which we live, into one in which there are fewer tragedies or less brutal echoes of them?
I think the answer to these questions is an emphatic Yes. To make my case, I offer you an improbable story of collective Empathy Deficit Disorder and of some of the steps taken to cure it. The story will take us back over three decades, and from the United States to Rwanda, where Partners in Health has worked for the better part of a decade.
Perhaps the story was improbable to me because I didn’t know much of it until one week ago, when I read a new book by, of all people, Elton John. He’s the promised rock star in this story. I knew that John had founded an important foundation, since it has supported Partners In Health’s work in rural Haiti. But, to be honest, I didn’t know how deeply and for how long he had been involved in reaching out directly to AIDS patients living in poverty in places like Atlanta, Georgia or New York City, until I read his new book, Love is the Cure, nor did I fully understand his foundation’s work in places including Haiti, South Africa and the Ukraine, to name just a few. My only excuse for not appreciating fully Elton John’s engagement is a pretty lame one: Between my father and my children, between “Crocodile Rock” and “The Lion King,” I’d experienced an excessive battering with his songs for much of my childhood and most of my adult years.
The story is about Mr. John’s empathy and what he did to transform empathy into action and reason. It’s about EDD and it diagnosis, often easy, and its cure, which is harder. Here’s part of the story as he tells it: In 1985, the British rock star was thumbing through a magazine and read about an American boy born with hemophilia. The boy, who hailed from a small town in the Midwest, was in and out of the hospital throughout his childhood. Like so many afflicted with this disorder but with access to care, he relied on infusions of a clotting factor to stop painful, potentially lethal, hemorrhage. As some of you will recall, U.S. supplies of Factor VIII, harvested from donated blood, were suddenly and widely contaminated with HIV, the virus that in 1984 was discovered to cause AIDS, which had been first described only three years previously. A huge fraction of hemophiliacs who relied on such treatments were subsequently discovered to be sick or infected.
This boy was one of them. His name was Ryan White. He was given six months to live. The year was 1984. The town was Kokomo, Indiana.
Although Ryan’s mother, who worked at the local General Motors plant, shared this hard news with her teenaged son, it was not Jeanne White’s plan, in those first years of a frightening new epidemic, to broadcast the news widely. But a local paper ran a story disclosing her son’s diagnosis. Soon the whole town knew. As if Ryan, sick with both hemophilia and AIDS, didn’t have enough problems, he was soon shunned and mocked by his peers; his locker at school, vandalized. The grown-ups were even worse: After one grueling hospitalization, Ryan was prevented from returning to school, although the medical community was pretty confident, even then, that the disease could not be spread through casual contact. Even at his church, no one would shake Ryan’s outstretched hand during the Rite of Peace. His mother and sister were also treated as pariahs. They were all threatened and worse. This was, of course, a stunning lack of both empathy and reason. It’s a classic case, retrospectively diagnosed, of collective Empathy Deficit Disorder.
Ryan and his mother decided to sue the school, not so much to cure EDD as to return Ryan to his classroom. A local judge dismissed the White’s lawsuit, instructing their lawyers that, if they had a gripe with the school superintendant’s decision, they were welcome to take it up with the Indiana Department of Education. During his appeal, Ryan could only listen in to his classes, calling in each day from home.
Elton John describes what happened next:
“The appeals process that ensued was long, nasty and public, with Ryan, now 14 years old, at the center of it all. The local school board and many parents of Ryan’s schoolmates were vehemently opposed to him attending school. More than a hundred parents threatened to file a lawsuit if Ryan was allowed to return. In late November, the Indiana Department of Education ruled in Ryan’s favor and ordered the school to open its doors to him, except then he was very sick. The local school board appealed, prolonging Ryan’s absence from the classroom. Months later, a state board again ruled that Ryan should be allowed to attend school with the approval of a county health official.
[And Mr. John continues:]
“With more than half the school year gone, Ryan was officially cleared to return to classes on February 21, 1986. The thrill of victory, though, was short-lived. On his first day back, he was pulled from the classroom and brought to court. A group of parents had filed an injunction to block his return, and the judge issued a restraining order against him. When the judge handed down his verdict, the room packed with parents began to cheer, while Ryan and Jeanne looked on, shocked and scared.”
At this point, even the least accomplished diagnostician will see, again, persistent unreason and further evidence of severe, chronic, collective EDD.
So why am I offering this story as an example of how empathy might be harnessed to reason and to long-lasting change? Because Ryan’s story goes on, as does Mr. John’s, in part because unstable emotions like empathy led to something better, more stable: “Like millions of people,” John continues, “when I read about Ryan in that magazine . . . I was incensed. More than that, I was overcome with the desire to do something for him and his family. ‘This situation is outrageous,’ I thought. ‘I’ve got to help these people.’”
Granted, the rock star didn’t then have, he reports, a clue about what to do to help Ryan and his family. But he took that spark of fellow-feeling, which all of us can know, and made something of it.
During that very same year, 1986, I was a medical student at Harvard and interested in AIDS because I met, first in Haiti and later in Harvard teaching hospitals, young people dying of it. Like many of my classmates, I too was distressed about Ryan White’s treatment. We were distressed about all those whose suffering, much of it caused by discrimination, was not then often addressed in magazines such as the one Mr. John had been reading when he first learned of Ryan’s plight. As some of you will recall, AIDS was erroneously said to have originated in Haiti and my first book, published over two decades ago, was in a sense about the relationship between AIDS and collective Empathy Deficit Disorder even though I had not yet coined the phrase.
Moving from fear or outrage to reasoned action can be fueled by empathy, This empathic leap also occurred for John and for many others, including AIDS activist groups; it continues to happen every day on campuses like UD. Ryan White became much more than a symbol or a cipher even before he died, at the age of 18, in 1990. His brave response to adversity, and that of other Americans who died of AIDS and also from neglect and scorn, led to something better. This happened because scientific and clinical research gave us, in the course of less than 30 years, decent treatment for AIDS. But didn’t these three decades give us examples of decent treatment for neglect and scorn, too? Yes it did, in part because Ryan’s mother and many others, including heroic activists from ACT-UP and others who “dare to be first,” took their own unstable emotions and transformed them into pragmatic plans to help others similarly afflicted.
This unlikely coalition took its emotion and resolve and growing knowledge to Washington, to fight for new rules of the road. To return one last time to Mr. John’s account: “In August 1990, only four months after Ryan’s death, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in his honor . . . Today, over 20 years later, Ryan’s law provides more than $2 billion in AIDS treatment and prevention services each year to half a million Americans. The vast majority of those who receive assistance through the Ryan White CARE Act are low-income, uninsured people living with HIV/AIDS.”
I repeat: low-income, uninsured people. This describes neither a British rock star nor, at least technically, the son of a woman working for General Motors. Thus is the sentiment of empathy transformed into what some of us term “pragmatic solidarity.” This sort of transformation, I announce here on Saturday the 25th of May, is the cure for Empathy Deficit Disorder.
Today, in our clinical work in Boston, we often speak of some of our patients’ social and medical needs as being met “by Ryan White funds.” But it’s easy to forget how outbreaks of EDD hurt, badly, the people most affected by AIDS. The great majority of them were not children, but grown-ups. Some of them, the ones who really did dare to be first, fought back with a brand of informed activism that changed how and with what tools we do much of our clinical work not only in Boston, but in places like Haiti and Rwanda and Lesotho. That’s one of the reasons why Partners In Health is able to even contemplate how best to address the ranking health problems of the poor, whatever they might be, in the places we work. What if the list includes, as it often does, breast cancer? Major depressive disorder? Drug-resistant tuberculosis? Death during childbirth? Whenever people harness empathy, fight apathy, and seek to address the global pandemic of EDD, we learn how to build systems to fight discrimination and neglect and to deliver health care to those who need it most.
Ours is a nation still saddled with a big EDD problem, however. If you’re poor and have AIDS in its nearby capitol, EDD can be lethal: Neglect is rarely benign and discrimination never is. But let me close with an improbably uplifting story because it’s important to me that you know that the results of comprehensive efforts to treat EDD can be excellent and far-reaching even when efforts to prevent it have already failed. This is the story of one of the places that went up in flames in the midst of epidemic EDD. At the close of 1994, after a genocide that took up to a million lives, Rwanda lay in ruins. Many of its hospitals and clinics had been damaged or destroyed; others were simply abandoned; a large portion of the health work forced had been killed or was in refugee camps. These settlements, especially those within Rwanda, were thinned by cholera and other “camp epidemics” and by a rising tide of AIDS, tuberculosis and malaria. Child mortality was the highest in the world; malnutrition was rampant. Many development experts were ready to write this small nation off as a lost cause, a failed state, a hopeless enterprise. There was some empathy, sure, but there was mostly horror and numbness and despair. This was a severe case of acute post-traumatic EDD, worsening the chronic EDD that had preceded it and indeed helped set the stage for the genocide.
Cut to 19 years later, as you graduate from UD. Today, Rwanda is the only country in sub-Saharan Africa on-track to meet, by 2015, each of the health-related development goals that almost all the world’s countries agreed upon 15 years ago. More than 93 percent of Rwandan infants are inoculated against 11 vaccine-preventable illnesses. Over the past decade, death during childbirth has declined by more than 60 percent. Deaths attributed to AIDS, tuberculosis and malaria have dropped even more steeply, as have all deaths registered among children under five. Rwanda is one of only two countries on the continent to achieve the goal of universal access to AIDS therapy; the other is far wealthier Botswana. There’s still a long way to go. But these are some of the steepest declines in mortality ever documented, anywhere and at any time in recorded history.
If that’s not a big-time reversal of fortune, I don’t know what is.
This has come to pass for many reasons and with the help of many partners; it has come to pass because of good leadership in Rwanda and sound policies in development, as in public health and in clinical medicine. But most of all, I will argue here, it has come to pass because Empathy Deficit Disorder was addressed within and without Rwanda’s borders. After all, most of this improvement has occurred among the poor and in the country’s rural reaches, traditionally neglected in all settings in which epidemic EDD is registered, which is to say just about everywhere.
But some of this improvement in Rwanda has also come to pass because the global pandemic of EDD is being diagnosed and addressed in our own country. The United States is far and away the largest single funder of AIDS treatment programs in Africa. The same is true of malaria and many other health problems. And there’s little doubt that many Americans, even in places like Ryan White’s hometown in Indiana, now support efforts to build up an empathy surplus and to help build reasoned programs that can save lives, improve health and mitigate the impact of future outbreaks of EDD. For this, I thank you as both a doctor and an American, and accept this honorary degree with great pride.
I end on this upbeat note because my diagnostic research on the student body here reveals only low rates of EDD at UD. This is not only because your mascots are called “the Fightin’ Blue Hens.” This would seem to call for pity more than empathy. I’m sure such hens are worthy, and probably even blue, but poultry of any sort so rarely inspire the sort of fear you want on a football field.
But he digresses, your President and deans and parents are thinking.
Close by joining me in a thought exercise. Contemplate the enormity of the challenges before our nation and our species and our planet, from climate change and unfettered population growth to economic recessions triggered by mind-bogglingly unsound business practices and on to violence and war. Remember the story of Ryan White, or that of the millions who died before there was a Ryan White CARE Act or a Global Fund to Fight AIDS, Tuberculosis and Malaria, or the U.S. programs with similar, global reach. Remember the story of Rwanda’s spectacular turnaround.
Now look around you. You are graduating from faculties with names like Earth, Ocean, and Environment. Engineering. Health Science. And within these schools, think of the degrees awarded here. Human Development and Family Studies. Nursing. Urban Affairs and Public Policy. The list goes on, as it should, since you’ve had since 1743 or so to get UD up and running, and this list includes, of course, all those graduating today with a bachelor’s degree, the largest number of fighting Blue Hens.
You can be the cure for EDD in its chronic and acute forms. You can be the folks who address local outbreaks of EDD and also the global pandemic, which has affected people in every single nation on this fragile and crowded planet. Indeed, ours is a world that requires nothing less than linking empathy and compassion to reasoned plans that harness it to meaningful action. I don’t think anyone sitting out there, or up here, believes for a minute that humanity doesn’t have a future. The UD students I met with last night and this morning remind me of the talent and smarts and good will of the next generation. But even our short-term survival calls for deliberation and calculation and expertise. These will not be marshaled in adequate quantities nor for the public good unless we address the global pandemic of Empathy Deficit Disorder. And that, dear Class of 2013, is well within our grasp.
Thank you for hearing me out, o! you empaths of UD. Congratulations to all of you, to your loved ones, and to that much larger group that might benefit from empathy and compassion transformed into solidarity and beneficent action. And, again, thank you for the great honor of allowing me to become a Fightin’ Blue Hen!
Photo by Evan Krape