Leprosy past and present: Rice graduate students visit the US’s former Leprosarium

Four Rice graduate students, one undergraduate assistant, their professor and a visiting scholar traveled back in time the first weekend of April in a trip to the National Hansen’s Disease Museum in Carville, La. The museum stands as a monument to those who once battled Hansen’s disease — what was once known as leprosy. The visit was part of Associate Professor of French Studies Deborah Harter’s Mellon Graduate Research Seminar, “Frames of the Beautiful, the Criminal and the Mad: The Art and the Science of Excess.”

The Rice University group, from left, Deborah Harter, Linda Ceriello, Nathanael Vlachos, Sarah Seewoester Cain, Emily Nichol and Rachel Schneider Vlachos, on the grounds of the National Hansen’s Disease Museum in Carville, La.

“It was a remarkable trip to a place that represents an enormously rich and important and also little-known part of U.S. history,” Harter said. “And the struggles recorded there, and the stigma, offer parallels with other moments in time — certainly, of course, with the advent of AIDS.”

Located on the east bank of the Mississippi River and the site of a former sugar plantation, the museum was once the site of the Louisiana Leper Home (later the Gillis W. Long Hansen’s Disease Center), one of two leprosy hospitals in the United States. In operation from 1894 until 1999, many patients entered the gates under mandatory quarantine and never left. Six patients still reside within its walls.

The trip was suggested last spring by one of Harter’s students, Sarah Seewoester Cain, who is working on a Ph.D. in linguistics and who played a key role in organizing the trip. The trip was embraced by all as an opportunity not to be missed, Harter said. Arriving late Friday evening, April 5, at the gates of the military base that now surrounds the original leprosarium and museum, they spent the night in the old infirmary where patients had stayed and were treated. On Saturday, they met with museum curator Elizabeth Schexnyder and Dr. David Scollard, current chief of the clinical branch of the National Hansen’s Disease Treatment Program in neighboring Baton Rouge. They also met Simeon Peterson, a patient who came to Carville from the Virgin Islands in 1951 and has never left, and Claire Manes, a writer whose grandfather and all her great-uncles had been quarantined in Carville and who is writing a book about their experience. Scollard told the group that Hansen’s disease today is a very treatable condition and one for which the federal government provides free care for patients nationwide who contract it.

Touring the grounds and walking the corridors, the group learned of how the glittering tops of Coca Cola bottles used to ring certain patient gravesites (only one example could still be seen) since Coca Cola wouldn’t take back from Carville the bottles they sent in. The names they saw carved on gravestones were all adopted names, taken by patients on their arrival to protect their families from a social stigma of near mythic proportion.

Located on the east bank of the Mississippi River and the site of a former sugar plantation, the museum was once the site of the Louisiana Leper Home (later the Gillis W. Long Hansen’s Disease Center).

“On one hand our experience was heartbreaking because we saw and were able to imagine the suffering that patients experienced here,” Harter said. “But it was also deeply moving for our recognition of the tremendous community that grew up within these walls and of the extraordinary efforts over time to fight this disease.”

The seminar, taught through the Humanities Research Center (HRC) and made possible by the Andrew W. Mellon Foundation, is dedicated to exploring evolving representations of excess over time — images of madness, the criminal, the eccentric and the rejected. “We have considered, side by side, the aesthetic with the scientific and the ethical with the historical and have been mindful of the dynamic tension between science and art in the uncovering of the contours of the human,” Harter said. She added that the visit had brought to life especially the ethical dilemmas that had been the subject of the seminar. “It has always seemed to me that we enlarge best our understanding of common human experience when we find ways to understand human experience at the margins. Needless to say, there wasn’t a single portion of this course, or of my students’ individual projects this year, that wasn’t powerfully enriched by what we saw and heard and felt as we walked the grounds and took in the stories and imagined the tragedies and triumphs of this remarkable place.”

Nathanael Vlachos, an anthropology Ph.D. student, was impressed and surprised by the relative control patients had over their lives, despite living in quarantine. “I expected to go to Carville and hear about patients who had been completely controlled in everything they did,” Vlachos said. “We came to find out they had a softball team, they had a patient-run newspaper, they put on plays, they did art. While they had no choice whether to stay or to leave, it was interesting to see how much agency they had, in fact, over their experience and their lives.”

The visit brought insights that went beyond the seminar’s context, the students found. Linda Ceriello, a religious studies Ph.D. student, saw connections to her studies in the field of comparative mysticism. “When you read the literature, you get a sense of how mystical experiences afflict individuals, marking them as ‘other’ both to themselves and as contextualized by the views of the larger society,” she said. “The stigma, secrecy and confusion that a person feels in grappling with how to live a ‘normal’ life and find acceptance — the stigma clearly felt by so many suffering from Hansen’s Disease — can sometimes lead, as it did here I believe, to extraordinarily interesting spiritual communities of the marginal.”

Rachel Schneider Vlachos, a religious studies Ph.D. student who studies race and religion in South Africa, was struck by the separation that existed at Carville. “It’s a huge compound. There was a staff side and there was a patient side,” she said. Though eventually they had the medical science to show that Hansen’s disease couldn’t easily be transmitted by direct contact, they still continued to reinforce and acknowledge very strict separations of space. For me, that tied into racial segregation, and, in the case of leprosy, to the stigma that was felt even by the people who were the patients’ caretakers and who were trying to advocate for them in the outside world.”

Taking Peterson’s fate as an example, Seewoester Cain was impressed by the contradictions inherent in the conditions that surrounded this disease. “This was a place in which a disease — excessive for the deformities it wrought and the fear it provoked — inspired treatment that included isolation and institutionalization and that forced removal from one’s home and family,” Seewoester Cain said. “And yet, as Simeon Peterson explained to us, there were certain freedoms: Medication was always optional, giving him a certain power over a condition that was otherwise beyond control. To me, our visit highlighted the contradictions that come with society’s treatment of every form of disease or difference.”

The group was joined by Gail Finney, a professor of comparative literature at the University of California at Davis. The seminar has been supported all year by undergraduate assistants Emily Nichol (an art major who was able to make the trip) and Kayla Shearer (majoring in English).

Begun in 2005 as a pilot program, the yearlong Mellon Graduate Research Seminars encourage cross-disciplinary conversation among doctoral students, faculty and visiting lecturers by providing feedback, structure and financial support to produce innovative research. Every year five graduate students from various departments who are in their third or fourth year of study are selected competitively for participation in a seminar. The HRC offers two seminars per year every other year. For more information about the seminars, including application guidelines for students and faculty and past seminar topics, visit http://hrc.rice.edu/mellonseminars.aspx.