NPR News

Excerpt: 'The Colony'

NPR | By John Tayman

Published February 2, 2006 at 5:24 PM EST

Preface

At 8 A.M. on Friday, September 26, 1947, a thirty-nine-year-old Honolulu physician named Edwin Chung-Hoon began to examine his second patient of the day. Chung-Hoon was a graduate of the Washington University School of Medicine, and his specialty was dermatology. He was currently on active duty with the U.S. Army Medical Corps and had been since the first days following the attack on Pearl Harbor, almost six years earlier. Much of the doctor's time, however, was spent on behalf of the Territory of Hawaii's board of health.

His patient that morning was a sweet-natured twelve-year-old boy. Chung-Hoon noted a slight inflammation of the child's right cheek, and minor thickening of the flesh at several sites on his face and body. Laying his hand on the boy's cool cheek, Chung-Hoon traced his fingertips upward from the jaw, gently searching for the area where the highway of facial nerves flowed together and then branched away. After a moment the doctor took hold of the child's right ear, then his left, and with the corner of a fresh razor blade cut a small incision a few millimeters in length at their base. The boy was silent during the first slice; when the doctor nicked the second lobe, his patient let out a wounded gasp. Chung-Hoon then made a bacteriological examination of the material he had excised. The process took about an hour. He entered the waiting room and told the boy's father the results: leprosy. One week later, the twelve-year-old was exiled.

For 103 years, beginning in 1866, the Hawaiian and then American governments forcibly removed more than eight thousand people to a remote and inaccessible peninsula on the Hawaiian island of Molokai, and into one of the largest leprosy colonies in the world. The governments did so in the earnest belief that leprosy was rampantly contagious, that isolation was the only effective means of controlling the disease, and that every person it banished actually suffered from leprosy and was thus a hopeless case. On all three counts, they were wrong.

With the establishment of the colony on Molokai, officials initiated what would prove to be the longest and deadliest instance of medical segregation in American history, and perhaps the most misguided. In 1865, acting on the counsel of his American and European advisers, Lot Kamehameha, the Hawaiian king, signed into law "An Act to Prevent the Spread of Leprosy," which criminalized the disease. In the first year, 142 men, women, and children were captured. The law in various forms remained in effect through the annexation of Hawaii by America in 1898, the adoption of Hawaii as the fiftieth American state in 1959, and until mid-1969, when it was finally repealed. Under the law, persons suspected of having the disease were chased down, arrested, subjected to a cursory exam, and exiled. Armed guards forced them into the cattle stalls of inter-island ships and sailed them fifty-eight nautical miles east of Honolulu, to the brutal northern coast of Molokai. There they were dumped on an inhospitable shelf of land of the approximate size and shape of lower Manhattan, which jutted into the Pacific from the base of the tallest sea cliffs in the world. It was, as Robert Louis Stevenson would write, "a prison fortified by nature." Three sides of the peninsula were ringed by jagged lava rock, making landings impossible, and the fourth rose as a two-thousand-foot wall so sheer that wild goats tumbled from its face. In the early days of the colony, the government provided virtually no medical care, a bare subsistence of food, and only crude shelter. The patients were judged to be civilly dead, their spouses granted summary divorces, and their wills executed as if they were already in the grave. Soon thousands were in exile, and life within this lawless penitentiary came to resemble that aboard a crowded raft in the aftermath of a shipwreck, with epic battles erupting over food, water, blankets, and women. As news of the abject misery spread, others with the disease hid in terror from the government's bounty hunters, or violently resisted exile, murdering doctors, sheriffs, and soldiers who conspired to send them away. Some already banished tried to escape, only to fall from the cliff or get swept out to sea. "The pit of hell," Jack London wrote, as he undertook a tour of the colony, "the most cursed place on earth." The mortality rate for patients in the first five years of exile was a staggering 46 percent.

Leprosy is not a fatal disease. Neither is it highly infectious. It is a chronic illness caused by a bacterium, and communicable only to persons with a genetic susceptibility, less than 5 percent of the population. Transmission takes place much as it does with tuberculosis, through airborne particles expelled by someone with leprosy in an active state. Among untreated patients, only a minority have the disease in its active state; the majority are not contagious. For cases that are active, a multidrug therapy has been developed that quickly renders their leprosy noncommunicable, after which they pose no risk of infection and are, in essence, cured. Every city in America has such cases; in the New York metropolitan area, for instance, more than a thousand people have or have had the disease. There are currently eleven federally funded outpatient clinics in the United States treating approximately seven thousand patients, although health officials believe many sufferers go untreated because of the powerful stigma attached to the disease. Though modern medicine has stripped the illness of its horrors, on a social level leprosy remains among the most feared of all diseases, since untreated leprosy can result in deformity, its precise mode of transmission was until recently unknown, and a cure remained undiscovered for thousands of years. The greatest factor in the stigmatization, however, was the historical intertwining of leprosy with religious notions of divine punishment, which gave rise to the corrosive idea that victims of the disease were sinful, shameful, and unclean. The preferred method of dealing with such people was obvious: banishment.

At its height in 1890, the population in the Molokai colony reached 1,174, and it was arguably the most famous small community in the world. The colony commanded intense scrutiny in the American press, and became the subject of presidential inquiries, heated congressional debate, and irrational public fear. Segregation laws gave the local government the right to arrest and imprison any person suspected of having the disease, regardless of nationality, and the rolls soon included not only Hawaiians and Americans, but also individuals from Britain, France, Germany, Japan, Russia, Spain, Sweden, Portugal, and China. Correspondents came from all over the globe, seeking scenes of thrilling grotesquerie. Physicians and scientists entered, some to offer help, others to indulge their own ambitions, an ethically suspect pursuit that led to one of the nineteenth century's most notorious episodes of human experimentation. Famous authors also secured a visiting pass: Stevenson spent seven days in the colony; London stayed six. "He returns and sits by his lamp and the crowding experiences besiege his memory," Robert Louis Stevenson wrote of the typical visitor, "sights of pain in a land of disease and disfigurement, bright examples of fortitude and kindness, moral beauty, physical horror, intimately knit." As the place grew infamous, celebrity sightseers flocked to it, among them Edward G. Robinson, John Wayne, and Shirley Temple, although she lasted only several hours. Other visitors stayed years, and the stories of their self-sacrifice transformed them into worldwide figures. One was a bullheaded young Belgian priest who fell victim to the disease and in so doing secured sainthood. Another was a fallen Civil War hero, seeking atonement for his dissolute past. Yet another was a modest, well-meaning nun from New York, who arrived to lend aid and quickly found herself the unwilling object of a most unlikely romantic obsession.

The most affecting stories, however, belong to the exiles themselves. Many had been mistakenly diagnosed and spent decades locked away before the error came to light. Thousands were needlessly isolated, their leprosy of a form that did not pose a danger to others. Some exiles were sent away as young children and suffered sixty and even seventy years in isolation before becoming free. Banishment continued well into the modern age. Even as man ventured into space and prepared to walk on the moon, the government kept watch over the colony of exiles, still imprisoned by ancient fears. Their struggle to maintain faith, form a loving community, and help one another stay alive is one of the most extraordinary acts of enduring heroism in American history.

Twenty-eight people remain in the community, passing quiet days in cottages at the base of the cliff. A few hundred yards from their simple homes is the spot where the first twelve exiles straggled to shore, cast away on the morning of January 6, 1866. Within three years all but two were dead. Their swift demise was expected -- it was a key component of the segregation plan. But in time the exiles began to defy the policy and accomplished something profoundly stirring and remarkable. They survived.

One final note: This is a work of nonfiction. It is based on more than eight thousand pages of documents, including news accounts, medical records, congressional transcripts, government publications, personal letters, memoirs, interviews, and observations. Anything between quotation marks is taken directly from these sources, and the thoughts and feelings of characters as described in the narrative arise from the same material. No names have been changed.

Today the terms leper and even leprosy are considered objectionable. As the chronology of the book progresses, all terminology is kept appropriate to its time, and thus when the word leper appears I have used it in historical context, or as part of a direct quote. An alternative modern term for the condition is Hansen's disease, named after the Norwegian bacteriologist who first identified the germ that causes leprosy. The medical community is split on the adoption of the term, however, and some physicians and patients prefer the older name. For the sake of clarity, I refer to the disease as leprosy throughout the book.