Carville Star

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Carville Star

Correspondant National David Rabius and The Star Editor Abel Aparicio

“ TRIUMPH  AT  CARVILLE “

This is a reprint of the review appearing in The Times-Picayune newspaper by Columnist Dave Walker on March 27, 2008.

PBS to air ‘troubling, challenging, beautiful film’ on the leprosy hospital.

Officially called U.S. Marine Hospital No. 66, the compound at Carville has for more than a century been an international destination for patients suffering from Hansen’s Disease, commonly known as leprosy.

Built around the remains of a run-down plantation, the center opened in 1894 and is still home to several patients. It’s a story told in engrossing detail in a new documentary “Triumph at Carville,” scheduled to air Friday, March 28 on PBS.

Caused by a bacterium, the infectious disease—a disfiguring biblical scourge that’s treatable due in part to research done at Carville, but not entirely understood – continues to afflict about 200 Americans each year. Worldwide estimates are poorly documented, but annual estimates are of new diagnoses top 750,000.

That tiny Carville, about 60 miles upriver from New Orleans, came to be a global nexus for patient care and treatment is but one of the stories told in “Triumph at Carville.”

Staffed by Daughters of Charity nuns but administered by the federal government, the center was a unique church-and state partnership that was both a haven and a kind of prison for patients, some of whom were committed and confined there against their will.

Old photos, radio broadcasts and newsreel-type films illuminate the first-person stories told by longtime patients, their offspring, doctors, staffers and administrators.

The stories are not always uplifting. According to the film, locals didn’t universally welcome the hospital’s residents, such were the horrors of the disease’s symptoms.

Says one former Director, “Lets put it this way. They were treated like lepers.” And yet according to a title card flashed early in the film, none of the workers at Carville ever caught the disease.

On the inside, life was lived as fully as it could be, as evidenced by stories about Mardi Gras and Christmas celebrations, weddings, a patient published newspaper (The Star), and occasional breakout runs to LSU football games or a nearby roadhouse.

One of the more heartbreaking facts of life at Carville was that children of married patients were removed to orphanages or other foster care. And yet, witnesses to life there interviewed for the film recall its heyday in mostly warm terms, despite such sometimes-sad history. Decommissioned as a federal center in 1999—and after hosting more than 5,000 resident patients—it’s now overseen by the Louisiana National Guard.

Among the outsiders interviewed are political consultant/commentator James Carville (who explains how the town got his family’s name) and former U. S. Surgeon General C. Everett Koop, who comments on the lessons learned during the ill conceived quarantine days.

The soundtrack, composed and performed by banjo master Bela Fleck (added by such killer players as bassist Edgar Meyer and dobro virtuoso Jerry Douglas), is a haunting and subtle aural base built around instrumentation including bass harmonica, wood flute and clarinet.

The filmmakers are Sally Squires, a Washington Post reporter, and John Wilhelm, a former Time Magazine science correspondent. Squires began making reporting trips to Carville nearly two decades ago. Her trips resulted eventually in a National Public Radio documentary and now this ‘troubling, challenging, beautiful film.’

Submitted by:

Michael S. Wood, Nationale Directeur Carville Star, 29 March 2008

*** You may purchase “Triumph at Carville” on DVD or VHS for $24.99 online by logging on to:   www.shoppbs.org  then click on to Recently Broadcast on the navigation bar. Or purchase it by phone at 1-800-531-4727

THIS IS A REPRINT FROM THE BATON ROUGE ADVOCATE JAN. 20  2008

National Hansen’s Disease Museum Provides Glimpse Of The Facility’s Former Role.

By: George Morris

Advocate News Feature Staff

January 20, 2008

CARVILLE – For a century, 300 fenced-off acres across the Mississippi River from White Castle were, to the rest of south Louisiana, a place of mystery and dread. Leprosy was all that most people needed – or wanted – to know about it.

Now, the National Hansen’s Disease Center and all but a handful of its patients have moved, replaced by the Louisiana National Guard’s Youth Challenge Program and a variety of other mostly military tenants. But a window into its misunderstood past remains.

Since 2002, the National Hansen’s Disease Museum has occupied a 6,000-squarefoot building originally built as the staff dining hall. It educates visitors not only about a once feared illness and the research breakthroughs that took place here, but about the distinct culture that developed the residents, both patients and caregivers.

“The visitors I really enjoy speaking to because I can relate to them in a real direct way, are the locals, people from south Louisiana who had some inkling that there was something around here, a mysterious hospital where this horrible malady lurked,” said curator Elizabeth Schexnyder.

The first Hansen’s Disease patients arrived in 1894 to an antebellum plantation that had been reconfigured both to care for and isolate them from the rest of the population. Research at the center would ultimately provide breakthroughs that made effective treatment possible and quarantining unnecessary.

Buy many people retain age-old fears of a disease that, for millennia, has caused society to drive away its victims.

“That it’s a curse, That it’s a stigma,” said Dr. Jim Krahenbuhl, director of the Nationale Hansen’s  Disease Programs, now based in Baton Rouge. “This disease is unprecedented. For a while, AIDS had the similar stigma, to the point where they said “We’re treated like lepers.”…..It’s in the Bible. It’s reinforced in the movies – fingers falling off and things like that. It’s all nonsense.”

Visitors learn that leprosy is not highly contagious, that 95 percent of the population has a natural immunity, Krahenbuhl said. Much of what the Bible describes as leprosy was other skin diseases. It did not cause fingers and toes to fall off. It is not fatal.

Which is not to say that it did not have devastating consequences. Caused by a bacteria, leprosy attacked the body’s cooler tissues, including the skin and peripheral nerves of the hands, feet and face. It disfigured. Victims often lost feeling in their extremities, so they would injure their hands and feet or suffer infections there without immediately realizing it. Molds of hands of Hansen’s Disease patients on display in the museum show awful results.

The museum also displays some of the center’s efforts to make life better for patients, such as adaptations to eating utensils and a wooden wheelchair used by patient Zella Brown of Durham Springs until her death in the 1990s. Although electric wheelchairs were available, Brown, a long-time patient, preferred using the hand cranks that were attached by a bicycle chain to the chair’s wheels.

A typical patients bedroom is recreated. Another room is dedicated to the Daughters of Charity, the Catholic order that arrived in 1896 and continued to work with patients until the facility relocated in 1999. But the museum’s largest section depicts life at Carville, which had its own businesses, post office, golf course, recreation center and publication

The Star Magazine was created by patient Stanley Stein after his arrival in 1931 as a way to reach beyond the fence to the larger world. Patient Johnny Harmon ran a photo business and also was a photographer for The Star, which had a circulation of 10,000 when Stein died in 1967 and later had as many as 160,000 subscribers, Schexnyder said.

“The Star provides a window into hospital life in the 40’s, 50’s, even issues with health care in the world at large,” Schexnyder said. “They had quite an audience of missionaries and patients overseas. I’m finding researchers are interested in coming back in and looking at these publications and writing about them today. We have an incredible wealth of photographs.”

Among the magazines fans was actress Tallulah Bankhead, who became a close friend of Stein’s. Their letters and telegrams to each other are exhibited. The veterans organization The Forty and Eight provided funds for a press and fought to allow patients to vote, a right that had been denied them until 1948.

Carville’s schools were racially integrated before any other in the south, Schexnyder said. Coca-Cola bottles were everywhere – used in a variety of ways in gardens and even graveyard adornments – because the distributor, fearing his other client’s reaction, refused to take the bottles back.

The centers trademark became the armadillo. One hurdle to finding treatments was that leprosy could not be grown in laboratories and was not thought to infect anything but humans. At Carville, researchers discovered that the armadillo, which has a cool body temperature, could contact the disease, which led to advances in drugs and vaccines.

The museum, which is open on weekdays, receives about 100 to 300 visitors a month, and Schexnyder gives walking tours of the facility on the last Saturday of each month. A good number of visitors are relatives of former patients who are trying to learn about their family member’s life, she said. Youth Challenge participants, who live at Carville for five months, also visit and ask the same questions as adults.

“This place has been a secret for a lot of people,” Krahenbuhl said. “The people who come here, when they leave they know a whole lot more than when they came. Their misconceptions are gone.”

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