11 No. 3
December 2008/January 2009
Unraveling healthcare's knottiest problems
Researcher’s alleged transgressions lead to more ethics oversight
“Is it reasonable for [a patient] to be able to demand everything be done regardless of what that does to the healthcare system financially, or to its ability to serve a wider population?”
“I don’t think the main role of the ethicist is to tell people what’s right and wrong. One who does that in my opinion abdicates one’s responsibility.”
Medicine and Compassion
Reaching across the silos to teach the "art" of healing
Things I've learned while I couldn't do my research
Egypt and Emory
Small collection, large footprint
Within the last eight years, as a faculty fellow at Emory’s Center for Myth and Ritual in American Life (MARIAL), I have carried out primary research on the emergence in American religion of a new institutional form—the family life center. These centers are slowly replacing an earlier model for moral education that was based chiefly on the model of primary and secondary public education in the United States. Family life centers have become the way many African-American, Spanish-speaking, and white Protestant, Catholic, Jewish, and Muslim religious leaders in Atlanta and beyond often think of what they do for their adherents—they promote healthy family life. The notion of healthy family life varies some by religion, but the core story is the same—the nuclear family is the unit of society most important, most stressed, and most at risk. Although this diagnosis may seem absolutely commonplace today, American religions’ foci have not always been the nuclear family, nor has “family individualism” long been the story of family life.
My research on growth of family life centers and the diffusion of the values of family individualism through communities of faith has been generously funded by the Sloan Foundation through MARIAL. Our director, Bradd Shore, has set a model of doing scholarship that has relevance. Sloan was thus eager to support our exploration of how family myth and ritual action shape and are shaped by culture, language, and institutions. Sloan
has affirmed MARIAL’s work by renewing our funding through several granting cycles. It has asked in return that we publish scholarly research, work to make our research available to the public, and provide usable
information about how to put our insights into practice.
Under Bradd’s leadership, faculty fellows, post-doctoral fellows, graduate and undergraduate fellows, and others whose research bears on our core work have created an intellectually deep and engaged group of scholars that meets routinely to discuss our own and others’ research. While Sloan’s funding and MARIAL’s support has allowed me to amass a stunning amount of data, these regular colloquies have made the greatest contribution to my scholarly identity. This intellectual community has shaped my own thinking about religion—in some ways, more profoundly than colleagues within my own discipline of sociology. But during most of 2007-08, as a drug-resistant staph infection invaded my spine and necessitated medical leave, I was unable to attend these gatherings. In lieu of attendance, the MARIAL website was a source of information and personal comfort.
During my time at MARIAL, I also had seven major surgeries and more than twenty-five separate hospital stays. Ill health sometimes made me unreliable and unproductive in an academic setting—both humiliating realities. Yet the intellectual resources of MARIAL enabled me to think about this personal experience in ways that helped me decide how to marshal my energies as I mothered a young daughter through my health crises, how to shape a story about what was happening in our family, and how to know when my nuclear family was stressed beyond its limits. This knowledge helped me be proactive in the midst of crisis, rather than simply allowing us to be buffeted by the constancy of calamity.
For many academics the move from data to practical insight is challenging. We mostly do not want to tell people how to live, except to say live out of your values. In my study of family life centers, I often encountered people who ask me, “You’ve done the research; what should we do?” Sometimes it is an institutional question about the creation, support, or expansion of these centers, but just as often it is about the lives of particular families. When asked these questions, I often felt backed into a corner and generally dodged my way out. But as my family went through crisis, I looked to MARIAL’s academic findings to figure out how to weather what we could not control.
I wanted to know how to promote and safeguard my daughter’s resiliency. How could we stay close as a family as I underwent both numerous and long hospitalizations? How could we address our stress as real and unmet needs piled up? As a nuclear family residing half a continent away from our extended kin, what family resources did we have?
My MARIAL colleagues’ research helped my family make choices and devise strategies during this time. My six-year-old thinks of the Emory Hospital cafeteria as our personal kitchen. The research of psychology professors Marshall Duke and Robyn Fivush showed us that eating together if possible around a table helps families deal with crisis and shape their stories. When I was unable to make it to the table, we made my bed a picnic spot.
Again following the insights about family narrative from Marshall and Robyn and their research team, I asked my daughter questions about what was happening for her, instead of primarily telling her what was happening to me. Co-constructing a story meant letting her trace her fingers over my “train tracks”–surgical scars—as she told me stories about where we would go together on the tracks that crisscrossed my body. “Where are we going today?” I would inquire. “Today it’s Africa, Mom. Get ready.” Since one of our family’s joys is traveling together, she turned a time of constrained horizons into a story of travel and adventure. This account would have been far from my own, as I bristled against my confinement. But as we took it on together, our family was able to treat the challenges of each day more like encountering a foreign land for the first time. We felt more confident that we could overcome the obstacles, just as we did when we encountered new realities in travel.
I felt the piling up of gender “inappropriate” roles in our family life as my husband was primary caregiver to my daughter and me. As a feminist I celebrated the fact that we could alter expectations. Yet I did not realize the challenges of my husband to maintain his gendered and professional identity in the process. But as I considered a presentation by anthropology professor Carla Freeman, I began to think of the historical and contemporary malleability of notions of respectability and consider its gendered reality. Her research on middle-class entrepreneurs in Barbados was a long way from our life. Yet she demonstrated how these business women address the stresses altering gender expectations in everyday life through religion and new ideologies about care of the body. I scheduled massages for my husband as he coped with the stress of unceasing caregiving. While he may have done this himself, I suspect he would not have because his Midwestern upbringing would not easily allow him to admit such a need for the care of his body. It simply wouldn’t be respectable.
Religion has been a vital resource for my extended and nuclear families. Particular communities of faith have helped us move through the multiple medical crises we have experienced including my husband’s cancer and the many surgeries and periods of recovery I have experienced as a person with a lifelong and progressive disability. I connected intellectually and personally with Bradd Shore’s early MARIAL research on the Salem (Georgia) Camp Meeting as a family theater performing the desire for and the reality of connection to place. In his effort to make the work publicly accessible, Bradd and his research colleagues made a film. During my recovery last year, I watched it again and again. The vividness of those experiences broke through the fog of illness to remind me of childhood stories that I had yet to pass on to my daughter; they prompted me to focus more on our current connection to Atlanta and our specific neighborhood. The film helped me emerge from my haze.
Gratitude for such gifts of intellectual life and practical insight seems insufficient. But as I continue to integrate habits of work that will sustain me for the long run at Emory, my appreciation is all I have to give to my colleagues who gave me a chance to learn from them how to practice family life. While I was unable to analyze my data, idled in my writing, and restricted from our regular gatherings, I learned that putting their insights into practice did help us pull together as a family and create new strategies for calming calamity.