Personal responsibility must be combined with social responsibility

Editor's note: "Take and Read" is a weekly blog that features a different contributor's reflections on a specific book that changed their lives. Good books, as blog co-editors Congregation of St. Agnes Sr. Dianne Bergant and Michael Daley say, "can inspire, affirm, challenge, change, even disturb."

I grew up very comfortable talking about sickness and health. My father is a physician and I have warm memories of seeing him working at the hospital. On special Sundays, my mom would take my three siblings and me to church. Then we would go eat lunch with my dad in the hospital cafeteria. Looking back, I realize now that it was because my father was working on a Sunday. But at the time, I remember thinking it was really neat to carry my own cafeteria tray and make my way to our family's favorite Sunday brunch spot: the round table in the corner of the hospital cafeteria. If we ate everything on our plate, we could even have Jell-O for dessert.

The older I got, the more I enjoyed talking to my father about his work. He'd share cases with us. I noticed that when family members or friends' relatives were sick, my dad was often asked to give advice or to check up on the patient in the hospital. At home, my dad encouraged us to take good care of ourselves: healthy food, daily exercise, no smoking, and absolutely no motorcycle rides. My dad saw a lot of people who were sick or injured because they didn't make good choices. He wanted his children to learn from his experiences treating those patients. Every case study had a clear moral lesson: Don't dive into water unless you know how deep it is; don't do drugs; don't drink and drive; be careful on ladders; don't swallow magnets; and always have health insurance.

I grew up with my moral compass focused on personal responsibility. I felt a sense of control over my life choices, not only because of my family's value system, but also because of the privileges I experienced as white and wealthy. At the same time, my parents taught us the importance of helping those less fortunate. My parents gave to charities. They participated in school fundraisers. And we always donated toys at Christmas to a poor family so that their kids could have a fun Christmas too.

When I learned about liberation theology — first as an undergraduate student at the University of Notre Dame and then as a graduate student at Weston Jesuit School of Theology — my worldview shifted in considerable ways. I continued to feel grateful for my hard-working parents and the values they instilled in me. But I also began to think critically about the world we inhabit. Why did my family have a room full of presents to open on Christmas morning, while other families did not? My father's advice of "never let your health insurance lapse" is good advice, but impossible to follow if you simply cannot afford it. To my parents' emphasis on personal responsibility and the importance of helping the less fortunate, liberation theologians added the necessity of social responsibility and solidarity with the poor. The person who has most influenced my thinking on liberation theology is not a theologian at all. He is a physician, medical anthropologist, and co-founder of Partners in Health. His name is Dr. Paul Farmer.

For more than three decades, Dr. Paul Farmer has argued that health care is a human right. Drawing on liberation theology, Farmer explains that he is "on the side of the poor." But he doesn't just write about liberation theology. He lives it.

Farmer grew up in a working class family, the second of six children. Tracy Kidder describes Farmer's unusual upbringing in his 2004 biography, Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World noting how his family lived in Florida when he was young, first in a campground and then a houseboat. Farmer earned a full scholarship to Duke University and earned his medical and doctoral degrees from Harvard. He practices medicine both in Boston and in Haiti. He also travels frequently for lectures, conferences, and health care advocacy with Partners in Health, whose mission is to provide a preferential option for the poor in health care. Farmer's impact on global health has been enormous.

Farmer grew up Catholic. Kidder describes how Farmer received the sacraments through Confirmation, but still did not feel engaged in church life as a boy and teenager. It was his encounter with Catholic nuns advocating for the rights of migrant workers that first drew him to the radical side of Catholicism's social justice teachings. Sr. Julianna DeWolf, working with the Friends of the United Farm Workers, introduced Farmer to Haitian plantation workers in North Carolina. Farmer's curiosity was stoked. He began to read more liberation theology and traveled to Haiti to understand the plight of the poor. Eventually, Haiti became home.

I was drawn to Farmer's writings because of his passion for justice coupled with his irreverent attitude. As a student, I found this strangely liberating. For example, Kidder describes a conversation with Farmer about faith:

He would say, some years later, that he had 'faith,' then add, 'I also have faith in penicillin, rifampin, isoniazid, and the good absorption of the fluoroquinolones, in bench science, clinical trials, scientific progress, that HIV is the cause of every case of AIDS, that the rich oppress the poor, that wealth is flowing in the wrong direction, that this will cause more epidemics and kill millions. I have faith that those things are true, too. So if I       had to choose between lib[eration] theo[logy], or any [-]ology, I would go with science as long as service to the poor went along with it. But I don't have to make that choice, do I?'

With regard to the church's teaching authority, Kidder notes Farmer's frustration with teachings that disregard solid public health strategies: "I'm still looking for something in the sacred texts that says 'Thou shalt not use condoms,' " Farmer told Kidder. Farmer focuses on the praxis of faith, not particular church teachings. Kidder explains that Farmer could have had a life of financial security, stability and safety, teaching Harvard students and treating patients in wealthy U.S. hospitals. But he felt his calling was to accompany people living in poverty and to bring excellent health care to them. His many books and articles provide an opportunity for him to share this vocation with readers. The book that has had the most influence on my life is Infections and Inequalities: The Modern Plagues, published in 1999.

Farmer's writing brings together a passion for justice, a method of listening to the poor through ethnography, and an interdisciplinary approach to understanding and solving problems. These ideas challenged me, inspired me, and shaped the direction of my doctoral work.

Infections and Inequalities focuses on Ebola, tuberculosis, and HIV. It demonstrates the blindness of a methodology that studies these epidemics solely from the perspective of infectious agents (be they viral or bacterial), without also studying the social inequalities that fuel the epidemics among human populations. Farmer tacks back and forth between the microscopic and the transnational levels. This is done in order to surface key questions about how to achieve universal access to health care and the goods necessary for each person to thrive.

Here is an overview of the key themes:

Understanding disease through a social lens

Farmer writes that diseases do not act "randomly," for example that the 1976 outbreak of Ebola in Sudan "was anything but random." Contamination resulted from improper sterilization of syringes in a mission hospital and because social inequalities shaped the contours of the epidemic. Wealthy expatriates did not seek care in the same health care facilities and thus were not "at risk" to the same degree as poor refugees. Similarly, Farmer explained "HIV has spread across the globe, often wildly but never randomly. Like tuberculosis, HIV is entrenching itself in the ranks of the poor and marginalized." Farmer describes how the poor bear a disproportionate burden of disease in every context.

'Immodest claims of causality'

Farmer is not afraid to challenge powerful groups or to rebuke scholars for their "immodest claims of causality." He is critical of physicians who blame patients for their "noncompliance" when patients could not afford to eat, purchase medicines, or travel back to the clinic for follow-up care. Through descriptions of his work with particular patients and their life stories, Farmer helps the reader see the complex threats in people's lives. Good medicine is important, but so is food, shelter, employment opportunities, and education. In Farmer's practice of medicine, he sees each patient in his or her full context. Instead of blaming a poor patient for being hungry and therefore "noncompliant," Farmer would assign blame to the structural forces that prevent that person from being able to have enough to eat. Farmer sometimes describes these broadly — poverty, gender inequalities, the legacy of chattel slavery or colonial power. But sometimes his blame is more direct: the Peligre hydroelectric dam in Haiti becomes a recurring symbol of corporate self-interest, government mismanagement, and the failure to protect the wellbeing of the families who used to live in the valley that was flooded.

'Stupid deaths'

Farmer is also an outspoken critic of those who argue that it is not "cost effective" to treat some patients. When someone dies of a curable illness, Farmer calls this a "stupid death." The problem, he says, is not that we don't have effective treatments. In the cases of tuberculosis and HIV, we do have effective treatments. But not everyone has access to those effective therapies. With regard to multi-drug-resistant tuberculosis, Farmer argues that with the right design and implementation, it would be possible even in resource-constrained settings, to effectively treat this disease. In chapter eight, Farmer describes in detail the Proje Veye Sante case study, in which two tuberculosis control programs were implemented side-by-side. Both offered medical treatments. One also offered nutritional assistance, close follow-up by community health workers including home visits, and payment of travel expenses for clinic appointments. The latter group had a cure rate of 100 percent, compared to the other, unsupported group's cure rate of 48 percent. Farmer writes that their project "suggests that high cure rates are possible in settings of extreme poverty in which hospital-based care is unavailable even for the critically ill." Farmer argues that "health policy is not a zero-sum game." We do not need to choose between prevention and treatment. We must figure out how to do both. And he remains optimistic about that possibility, even as he documents his criticisms of the status quo.

The importance of listening

Farmer's use of ethnography and storytelling is particularly effective in Infections and Inequalities. In order to introduce readers to the issues at the heart of the book, Farmer tells the life stories of his patients. Borrowing a term from liberation theology, Farmer asks, "Who are these throwaway people?" As he tells the stories of Jean Dubuisson, Corina Bayona, and Calvin Loach, he contextualizes their experiences of tuberculosis by explaining their medical histories, family experiences, and the social forces that constrained their behaviors (the Peligre dam in Haiti, flawed World Bank and IMF policies imposed on Peru, and the treatment of Vietnam veterans and people of color in the U.S.). For Farmer, listening is a gateway into understanding the complex social worlds we inhabit. But listening alone will not solve his patients' problems. Listening must become an opportunity for conversion and action. Farmer calls this a move towards "pragmatic solidarity." This means listening to understand the burdens a patient labors under (e.g. hunger, bad harvests, leaky roofs, dirt floors), attending to those problems, and seeking increased support to deliver the best possible therapies to every patient, even the poorest ones.

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Infections and Inequalities raises moral questions about the way our world is structured. It also proposes health care solutions rooted in the claim that all persons have inherent human dignity and should have access to good medical care. Since the book was published, there have been some important gains in global health. New cases of HIV have fallen by more than 35 percent, but there have been significant challenges as well. The 2010 earthquake in Haiti, itself devastating, was made worse by a cholera epidemic that killed over 8,000 people, and cholera is still a problem today, in the wake of Hurricane Matthre. A new outbreak of Ebola in West Africa killed over 11,000 people before the World Health Organization declared Sierra Leone, Guinea, and Liberia to be Ebola-free in 2016.

From Farmer, I learned to ask big questions, to choose terminology carefully, to get the data, and to listen to and partner with the most marginalized. I chose to focus my doctoral research on women's experiences of HIV and AIDS in part because of the influence of Farmer's writings on my worldview. As a graduate student in Chicago, I worked at a social service agency on the north side of the city. There I came to understand the particularities of the HIV epidemic in Chicago through the people I met there, many of whom seemed to me to be doing the best they could in very difficult circumstances. Infections and Inequalities challenged me to recognize my own privileges and my own complicity in structural injustices, even as it also rejected "public health nihilism." In Farmer's writing I saw pragmatic and hopeful solutions to thorny, complex problems. I saw the importance of ethnography in understanding social problems and in enabling readers to step into the shoes of another person and understand reality from another's perspective.

I have also enjoyed assigning Farmer's writings in some of my classes (most recently, in my HIV/AIDS and Christian Ethics class, and in my Christian Changemakers class). For over a decade, the writings of Paul Farmer have provided my students with examples of how to apply Catholic social teachings in the real world, without losing hope. His story also raises hard questions about self-sacrifice and the cost of discipleship. Readers of Tracy Kidder's biography of Farmer, Mountains Beyond Mountains, have to wrestle with the personal cost of Farmer's vocation to serve.

Speaking personally, I find that every time I encounter his story I am invited to more deeply reflect on my own deepest values and my desire for a comfortable middle-class life. Can I really say that I am "in solidarity with the poor" when I am so well fed, well educated, well connected? I am deeply appreciative, not only of Farmer's persuasive books, but also of the example of his life and how he continues to model what it means to serve the poor.

[Emily Reimer-Barry is assistant professor in the Department of Theology and Religious Studies at the University of San Diego. Her most recent book is Catholic Theology of Marriage in the Era of HIV and AIDS. She also blogs at catholicmoraltheology.com.]