The Leper Spy (22 page)

Leprosy was first identified in Louisiana in the 1760s, and it was believed the disease arrived during the slave trade or was brought south by the French-speaking Acadians whom the British ousted from Nova Scotia in the second half of the eighteenth century. Those labeled lepers were mostly exiled to designated colonies or settlements, the largest of which was located in lower Bayou Lafourche, in the swamplands southwest of New Orleans. They lived a miserable existence amid the mosquitoes and alligators of the blackwater swamps. And sometimes they migrated to the cities. In the late 1800s, a considerable number had moved to New Orleans and were mixing freely with the uninfected population. This was a source of robust consternation for those not afflicted.

Like everywhere else, the New Orleans medical community held conflicting views of leprosy. It was infectious and contagious. It was hereditary and incurable.

In the 1890s, a New Orleans dermatologist named Isadore Dyer began trying to bring leprosy into the framework of science and medicine.

“Leprosy has always stood as the example of the most fearful of human afflictions,” he wrote. “The Biblical estimate of the disease has created a popular horror which even down to modern times has placed the leper as a pariah and a person condemned by his state to abandonment. It must be classed among the contagious diseases, not as contagious as tuberculosis or syphilis, but still a menace of no mean importance, when it is considered that its spread is as constant as it is insidious and that its evidences are more horrible than most known diseases.”

Dyer favored segregation as much for the protection of the healthy from the leprosy victims as to protect the “lepers” from the healthy. He was critical of the keeper of a “pest house” for leprosy patients in New Orleans. A muckraking young journalist from the
Daily Picayune
wrote a series of articles in the 1890s exposing the horrible conditions at the place, much like A. H. Lacson would later do with Tala. The series and Dyer's preaching finally convinced the state legislature of the need to form a State Board of Control for the Leper Home in order to find a permanent site for a new colony where patients could live.

The idea was to isolate those afflicted and also provide treatment and nursing by those willing. But no sooner was a site selected, no matter how remote, than protest raged against it. The commission thought it had secured a fine site on the shores of Lake Pontchartrain, twenty miles from the nearest house. But as soon as it was announced, those who lived around the lake raised holy hell. They complained that waste runoff and hospital debris would wash up on their shores and spread the disease. The “leper commission” buckled under the pressure and started its search anew.

The commission soon set its sights on an abandoned slavery-era sugar plantation on the Mississippi River called Indian Camp, in Iberville Parish, not far from a prosperous town called White Castle. The ruse to the locals was that the 337-acre plantation was being converted into an ostrich farm, and the commission quietly transformed the dilapidated antebellum mansion into a hospital and the slave quarters into dormitories for the new patients. The plantation had room for one hundred lepers.

After dark on November 31, 1894, seven of the ten inmates at the pest house were loaded onto carts and driven to the New Orleans wharf in secrecy, where Dyer and a few journalists were waiting. The group climbed aboard a coal barge, and a tug started churning north on the black Mississippi toward Indian Camp.

They couldn't keep the plan quiet for even twenty-four hours. As soon as the sun came up, the ten-year-old son of the local postmaster rode his pony to the top of the levee to catch sight of the ostriches that were supposed to be coming.

“Lordy, Lordy, little boss,” said his companion, an elderly black man. “Them's no ostriches—them's sick folks!”

When locals finally figured out what was going on, they protested vigorously, signing a petition and threatening violence. But it was too late. The Louisiana Leper Home opened in 1894, the first leprosarium in the United States.

But difficulties remained. First, the locals didn't want them there. They refused to sell bread and supplies to the hospital, so goods had to be shipped upriver from New Orleans. The servants and nurses at the hospital were warned they'd be shot if they set foot off the grounds. Besides that, the patients didn't like the idea of being confined or in some cases forced to leave behind their husbands or wives or children. Some simply refused to go. State officials decided that the inert and stubborn victims would be rounded up, but no law enforcement officers were happy about orders to hunt down lepers, physically round them up, and transport them to Carville. The last time the Board of Health had sent a commission
down Bayou Lafourche to examine the lepers in the largest colony in the state, the afflicted were scared they were going to be captured and imprisoned, so they fled deep into the swamps to hide.

Little by little during the following decades, improvements were made at the hospital, and patients began to migrate voluntarily. And they began to make Carville home. They grew vegetable gardens and decorated their rooms and argued for modern conveniences like hot plates and bicycles. Some of them married and built their own homes on the hospital grounds from scrap materials and salvaged wood. The patients organized and convinced hospital authorities to improve the facilities. They got a soda fountain, a swimming pool, a telephone booth, and a modern lounge.

Most of the amenities were a direct result of the work of patient no. 746, Stanley Stein.

S
tanley Stein arrived at Carville in 1931, seventeen years before Joey, carrying copies of the
New Yorker
and
Theater Arts
and dressed in a Brooks Brothers topcoat, a natty tweed suit, a perfectly knotted foulard, and spats. Rumor spread among the patients that he was a millionaire from New York.

The truth was, Stein was a Texan, born and raised outside San Antonio, with a degree in pharmacology from the University of Texas. He had opened a drugstore in San Antonio after college, but his real love was the community's little Jewish theater. He wanted to be an actor and was chasing that dream when the first symptoms of leprosy started appearing on his skin.

In a century of rapid scientific advancement, the disease still carried a stigma, reinforced by confused biblical injunctions and historical medical ignorance. A doctor sent Stein to New York for treatment, but that doctor reported him as a leper, and almost overnight he was swept up and sent secretly by train to New Orleans, then to Carville. American quarantine laws required that leprosy victims be locked away without means to legally protest.

Stein's arrival was a culture shock. He noticed rows of barbed wire atop the tall cyclone fence surrounding the hospital, at the time called US Marine Hospital No. 66. He realized he was no longer free. He was in exile in his own country.

“Have you decided on your new name, young man?” one of the sisters asked him. Sidney Levyson was his birth name, but on arrival at Carville, he was encouraged to change it.

“Suddenly it all made sense,” Stein would later write. “I was not just a sick man entering a hospital. I was a lost soul consigned to limbo, an outcast, and I must spare my family from any share in my disgrace. My mother, who adored me, had hidden my secret from her closest relatives. Uncle Berthold had almost fainted when he learned the truth. I myself had not wanted my friends and relatives to know what was wrong with me.”

Stein was young, thirty-one, and educated, but this was new.

“You have done nothing to be ashamed of,” the sister told him, “but there are some stupid people in the world and you must protect your loved ones from their stupidity. Perfectly healthy children have been denied the right to attend school because some member of their family was at Carville. Some patients have preferred that their friends believe them to be dead to save their families from abuse and ostracism. Choose a name you will be proud of someday.”

Stanley Stein was born. With the change, his life suddenly seemed uncomplicated. He was soon studying leprosy, and the head nurse at Carville was happy to turn over her copies of the
International Journal of Leprosy
and
Modern Methods with an Ancient Scourge
for his research. Stein was surprised to learn his malady and the malady of the others at Carville had nothing whatsoever in common with the symptoms of the biblical “leprosy” in Leviticus 13: “When a man shall have in the skin of his flesh a rising, a scab, or bright spot, and it be in the skin of his flesh like the plague of leprosy; then he shall be brought unto Aaron the priest, or unto one of his sons the priests. And the priest shall look on the plague in the skin of the flesh: and when the hair in the plague is turned white, and the plague in sight be deeper than the skin of his flesh, it is a plague of leprosy: and the priest shall look on him, and pronounce him unclean.”

Stein noticed off the bat that there was a sort of hopeless apathy hovering over the place. The listlessness with which his fellow inmates went about their daily lives sickened him. He couldn't understand why the laughter at Carville—what laughter there was—was of despair. He understood that they were all suffering from a disease that made half the world panic and flee, but it was less terrible than cancer and less contagious than syphilis.

He aimed to make the most of his new life as an outcast. He took a job, got a role in a patient play, and met new friends. Soon he convinced a few of them to help him start a patient newspaper, the
Star,
and gave it the motto: “Radiating the light of truth on Hansen's disease.” The first issue was printed on May 16, 1931, two and a half months after Stein arrived, and it carried a sports column, social calendar, drama criticism, and a feature story about a hen caring for four baby kittens on the Carville campus. But a few short years later, the
Star
had become a trumpet for the rights of Carville patients and Hansen's victims all over. People took to calling Stanley Stein the Carville Crusader.

“It has long been recognized that ‘It pays to Advertise.' We are convinced that it also pays to protest,” he wrote in the
Star.
“Guided by our favorite axiom, ‘to permit an error to go unchallenged is to participate in it,' THE STAR attacks any and all false statements about leprosy appearing in the press or magazines whenever they are brought to our attention, and with uncanny inevitability we hear about such statements. Sometimes our letters of protest are ignored, sometimes we get a polite brush-off, but in most cases the offending parties, after learning the truth, are willing to correct the error which they unwittingly expressed.”

His early target was the word
leper.
Stein wanted to banish the word from the English language, and it was a frequent subject of editorials in the
Star.
He also took on the Catholic Church, which had an ancient custom of holding a “leper Mass” in which an afflicted person took part in his own funeral before being banished from his community.

To our minds, this ceremony is about the cruelest of practices that could ever be perpetrated in the name of religion. We can only contrast such a treatment with that of the Divine Savior, who healed the ten sufferers and left no instructions that they ever be treated in any other manner. We feel that the Church, both ancient and modern, has done more to keep the stigma of leprosy alive in the public mind than any other force. We admit, however, that they have done lots of good. Foreign missionaries are doing wonderful work among the half-civilized and starving victims of leprosy in other lands, ministering in a noble and heroic way to their needs, both spiritual and physical. But on the other hand, they are still influenced by the superstitions of the Dark Ages as related to our social status. We are still outcasts in their minds, and they still continue to hold the Leper Mass over us, though in a somewhat modified form. For the unfortunate victim, it is tragic indeed that leprosy, of the many loathsome diseases, should get mention in the Bible as a special sign of the Almighty's disfavor.

The blunt criticism offended some, but Stein was able to deftly navigate the system in which he was stuck and remain friendly with those he attacked in print. The chaplain at Carville, who had taken offense to the editorial about the “leper Mass,” still supported Stein's very basic point that equating leprosy with sin was incorrect and discriminatory. Writing to publications that circulated among priests, such as the
American Ecclesiastical Review,
Father Abbot Paul warned his fellow pastors about unfairly linking the disease with sin.

Some preachers are apt to stress in detail the supposed horrors of the disease. In an effort to castigate prevailing vices, they may be tempted to draw a parallel between
sin and sickness, in connection with leprosy. But, unlike some other diseases, leprosy is not caused by indecent and unclean living. In our hospital we have saints as well as sinners and they were saints before they contracted the disease.

One of Stein's most useful characteristics was his tenacious letter writing. He fired off hundreds—maybe thousands—of responses to newspaper and magazine editors and television and radio station managers who had printed or broadcast dusty, damaging myths about leprosy, or used the loaded word
leper
as a pejorative. He also often wrote to corporations using the word in advertising campaigns. He published in the
Star
an open letter to the makers of Absorbine Junior, which had launched a national advertising campaign that had as its slogan: “Don't be a locker-room leper!” Speaking for the citizens of Carville, he wrote, “We do not spread obnoxious infections such as those afflicted with athlete's foot may do.”

Stein's letters were often stern but inviting. Learn about the disease, he'd write, so you can help us educate the public. Come visit Carville, he'd write, so you can erase the stigma. He had science on his side. Studies were showing that leprosy was not nearly as contagious as previously thought. Research showed that 95 percent of the US population was naturally immune to the disease. No doctor or nurse or nun or visitor to Carville had ever caught leprosy from a patient.