Voices of Kalaupapa

All photos from "The Separating Sickness"
Father Damien poses with the girls' choir at Kalawao in the late 1870s, when he was still a healthy man..

"You know, the babies that were born inside here were not allowed to stay with their parents. After the babies were born, the law said they had to be taken away to the baby nursery in Kalaupapa. They were afraid of the contact - afraid the babies would catch the disease from their parents ... they allowed the children to live one year inside Kalaupapa nursery. There we could see them only through thick glass, but no can touch! Then, after one year, they were removed. They were either hanai by family members or 'issued' out for adoption by the Board of Health ..."

These interviews were collected by sociologists Teb Gugelyk and Milton Bloombaum and published as "The Separating Sickness: Ma'i Ho'oka'awale" in 1979. The book was recently republished by the Separation Sickness Foundation and is once again available at Hawaii bookstores (ISBN 0-9653971-0-6, $15.95).

"That book give great insights into what it was like at Kalaupapa from the inside; the first book, really, to talk about Hansen's disease from the patient's point of view," said Stephanie Castillo, creator of "Simple Courage," an Emmy-award-winning documentary on the subject.

"There are some truly amazing stories in there."

Kalaupapa is no longer a quarantined area; it is now a National Park and historical site. Hansen's disease can be controlled. Many Kalaupapa residents view the peninsula as a refuge instead of a cage.

A family in confinement at Kalaupapa

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Epidemiologist Richard Vogt would not identify the specific country of origin for fear that other immigrants from that country would be ostracized, even though "Hansen's disease is one of the least infectious diseases known to man.

"They still don't get many Asian visitors (at Kalaupapa) because of the way the disease is still viewed in Asia," said Gugelyk.

"In Cambodia, in Vietnam, they still have leprosariums, places to remove the patients from the mainstream of society."

Male, Part-Hawaiian Age: 80, 65 years at Kalaupapa Idon't blame anyone for the leprosy problems I have . . . But I am bitter. I wish I was dead three years before I was born. But, what shall be shall be. I think I am just an unfortunate human being. I used to feel the leprosy germs inside me bucking like a wild horse -that wild germ!

A fascination with the social stigma and avoidance behaviors attached to Hansen's disease led Gugelyk and Bloombaum to interview the patients in the 1970s.

"For two years, I went over every Friday to do interviews," said Gugelyk. "They eventually began to trust me and open up. Generally, they view themselves not as victims of disease, but as victims of the earlier policy of confinement."

The book helped not only to open the eyes of those frightened by the disease, but to help establish Kalaupapa's role in Hawaiian history, said Gugelyk.

"The National Park Service is now dealing with the historical aspects of Kalaupapa, and they're doing a good job so far. It will keep the area from becoming a golf-course resort," he said.

If any profits are realized from the book's reprinting, they'll be given to leprosariums in Southeast Asia, where help - and education - are needed.

There is a also a web site for the book.

Since the book was first published, Bloombaum has retired and now runs a coffeehouse in Oregon.

Gugelyk, "pushing 60," makes it a point to surf as often as possible, and has a fiction book being released this spring, "Mango Lady & Other Stories," about "the view of the world from senior surfers."

And many of the anonymous voices memorialized in "Separating Sickness" are "long gone, dead now," says Gugelyk.

Their legacy, their voices, remain only on the printed page, as reflected in this passage from a "male, part-Hawaiian, blind, disfigured" 48-year-old:

"Am I bitter? Sure, I have some bitterness. I feel cheated. I don't blame anyone for my disease, but I am bitter about the stigma put on me. But, it is my fate ... we were not intended to last forever. We are all bound to die and rot away from something. But leprosy is the worst. You don't die right away. First you have to face the public and the people around you. It's the slow torture death."

The Separating Sickness
By Ted Gugelyk and Milton Bloombaum
124 pages