STEPHANIE SALTER: PBS leprosy documentary ‘Triumph’ features scientist from Terre Haute

By Stephanie Salter
The Tribune-Star

TERRE HAUTE March 25, 2008 09:58 pm

— Not 75 miles from New Orleans — but cut off from that city and the rest of civilization — they celebrated Mardi Gras among themselves, electing their own queen and sometimes making parade floats of wheelchairs.
When Coca-Cola feared economic blowback and refused to collect or refund their used soda bottles, they began to drive them, neck-down, into decorative patterns in the ground around their institutional home.
“Captive creativity” is a familiar term around the National Hansen’s Disease Museum, a former hospital and now educational facility dedicated to the sometimes shocking and sad, but hope-filled story of leprosy (or Hansen’s) in the United States.
The burden of that captivity — leprosy patients were separated forever from their families and communities — and the human creativity that allowed them to re-invent their existence is at the heart of a new PBS television documentary, “Triumph at Carville: A Tale of Leprosy in America.”
The film premieres nationally this week (see information box) and has a local, Terre Haute connection.
Tom Gillis, who graduated from Garfield High School in 1967, is among dozens of scientists, physicians, historians and leprosy patients who were interviewed for and appear in the hourlong film.
Gillis is a medical microbiologist at Louisiana State University and the chief of laboratory research in the National Hansen’s Disease Programs in Baton Rouge. His specialty in leprosy came somewhat late in his career, he said, in a telephone interview earlier this week.
“I started out with an interest in inter-cellular pathogens, and I was looking for something to pursue that had some meaning,” he said.
While doing post-graduate research at the University of Washington in Seattle, Gillis began to learn more about — and be drawn to — the work of scientists in Louisiana. They were studying and curing an ancient disease that has sown dread since Biblical times and still is misunderstood by most non-medical people.
“Leprosy is really just a skin infection, in its early stages,” Gillis said. “Here and in Europe, if you’re diagnosed today, you take your antibiotics and you go home. You’re cured. But if it gets to the nerves, which it always does if untreated, then the kind of damage that marks a person as a leper results.”
Back in the early part of the 20th Century, when the state of Louisiana donated more than 350 acres of an abandoned sugar plantation to the federal government for a leprosarium, no one was thinking “just a skin infection.”
No one, including physicians, knew that leprosy is one of the most difficult diseases to contract. Only about 5 percent of the human population lacks specific immunity to the bacteria that cause leprosy.
That reality check, and many others, make up much of “Triumph at Carville.” For example, during the last century, Americans with leprosy lost not only their freedom to move within society, but also their right to vote. Parents were separated from their children, including newborns, and spouses from their loving mates. Even as airplanes flew and medical miracles abounded, a leprosy diagnosis meant the end of life, as unlucky patients had known it:
Federal law required the permanent quarantine of any adult or child with the disease.
John Wilhelm and Sally Squires, a husband-wife film team, are the creative force behind “Triumph.” Squires, a medical writer for the Washington Post, made her first trip to Carville in 1989 to report on the work there. With her, Wilhelm co-wrote, co-produced and directed the documentary.
Of particular delight to Gillis, who played bass guitar in the legendary Terre Haute ’60s band, the III Deuces, is the musical score for the film. Two Grammy Award winners — international banjo master Bela Fleck and bassist Edgar Meyer — play Fleck’s original music.
Wilhelm worked from nearly 100 hours of film and video footage, 45 of them archival. He also incorporated vintage radio broadcasts and hundreds of still photographs to accompany interviews.
Former U.S. Surgeon General C. Everett Koop headed the Carville documentary’s board of advisers. A PBS news release quotes Koop, saying, “If this film had been an opera, I would have stood and cheered, ‘Bravo!’”
“Operatic” is a pretty accurate adjective for the Carville story. So defining, and damning, was the leper stigma for patients, many changed their surnames to spare their families.
The cemetery at Carville still holds unsolved mysteries about the lives and relations of some of the people buried there. The only remaining Coke bottle garden arrangement on the entire property, in fact, is a circle surrounding one of 743 documented graves. Museum staff do not know if the deceased’s tombstone bears “his birth name or his ‘Carville name.’”
But the word “triumph” is not incidental in the PBS documentary. The patients at Carville did manage to transcend the fear, ignorance and cruelty inspired by their condition. Their school was integrated well before most southern schools, there were chapters of the Lions Club and the American Legion, and Protestant and Catholic chapels were built in which they worshiped.
As the nature and cure of Hansen’s Disease was determined in the latter half of the 1900s, patients could leave the hospital and re-enter society. Most did.
Only about a dozen still live on the grounds of Carville, which the government returned to Louisiana several years ago. The elderly residents stay there by choice now, not mandate.
The research done at the hospital and at LSU continues to reverse the outcast status of Hansen’s patients around the globe. One by one, Third World nations slowly are benefiting from earlier diagnosis and drug therapies. But millions of people still suffer the stigma of the leper.
Gillis, who regularly travels the world to help hasten the end of such stigmatization, plans to be in Bethesda, Md., tomorrow night for a special screening of “Triumph at Carville” at the National Museum of Health and Medicine. He said the documentary’s just making it to PBS has been something of a miracle, itself.
“Sally and John finished the movie a few years ago, but no one wanted it,” he said.
“They went everywhere, trying to sell it. The reaction was, ‘What? Leprosy? We’re not putting that on our station?’ It may be the Third Millennium, but around leprosy, some things are slow to change.”

Stephanie Salter can be reached at (812) 231-4229 or stephanie.salter@tribstar.com.

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