Kalaupapa resident Joseph Manu in 1933. Photo courtesy Damien Museum Archives

By Liza Simon / Ka Wai Ola Loa

This may very well be shaping up to be the year of living fearfully. In the last six months, a torrent of economic angst morphed seamlessly into a dreaded influenza crisis. The mysteriously new microbe fueled irrational fears that manifested as finger pointing at the nation of Mexico, policies of immigration, the entire species of pigs and other undeserving targets. That such responses could only aid and abet a health crisis was underscored by Pulitzer prize-winning journalist Laurie Garrett who wrote in Newsweek that "…exercises in blame are not only scientifically ill-founded, but are likely to prompt government actions that, at the very least, are useless and, at worst, harmful for efforts to control a pandemic."

Against this grim backdrop, one sunny ray of redemption is the upcoming canonization of Belgian-born priest Damien de Veuster. A minister to people with leprosy placed under a government-sanctioned quarantine in Kalaupapa, Moloka'i over one hundred years ago, Damien today is considered the patron saint of disease victims who find their medical ailments are compounded by a society that fears them and hammers them with worse – stigmatization, discrimination, and denial of basic rights.

The Makanalua peninsula, commonly referred to as Kalaupapa, where Father Damien ministered to leprosy patients. Photo courtesy Anwei Law

No doubt, the ceremony at the Vatican will elevate Damien for his legendary defiance of so many misconceptions about disease. But will it cast him in such a pious light that he loses relevance as a saint for these trying times?

This has been a driving concern for former Hawai'i resident and frequent Kalaupapa visitor Anwei Law. A human rights activist and founder of a worldwide project for the rights of people with leprosy, Law has rushed to publish Father Damien: A Bit of Taro, A Piece of Fish, A Glass of Water.

Law and her photographer husband Henry Law, with whom she co-authored this short volume, expect to finish a comprehensive Damien biography in the near future. In the meantime, she wanted to make sure that amid all the praise and pomp of the October canonization, the voices of Kalaupapa people would not be lost. Culminating decades of research which she began informally as a junior at O'ahu's Kalani High School in 1968 when her father – a Honolulu Doctor specializing in pathology – first arranged for her to visit the so-called Hansen's disease settlement of Kalawao in Kalaupapa, Law has woven into the new book hundreds of letters, petitions, journal entries, transcripts of oral histories of Father Damien's colleagues and their descendents, plus the writings of Father Damien himself and Law's own shrewd narrative.

Through this lens of the experiences of those who struggled alongside the Belgian priest and of many sent to the settlement long after the priest's passing and even after the 1941 discovery of a leprosy cure, the Belgian priest is depicted in the new book as a simple-living man rooted firmly in soil of Kalaupapa and the mutual respect and compassion he shared with the mostly Hawaiian population there.

"This is a history of relationships and how people were put in an unimaginable situation and yet they created a sense of community that inspired the world," said Law, speaking by phone from Seneca Falls, New York, where she helped to found the IDEA Center for the Voices of Humanity, a non-profit that has gathered oral histories of people with leprosy in over 40 nations.

"If you only tell history from the standpoint of what is done to people, you miss an important part of history, which is how people respond. This book is about that response and all that it teaches us," said Law, adding that the response in Kalawao turned out to be inseparable from some deeply ingrained Native Hawaiian values.

One of these values is a sense of justice—the pursuit of equal rights and equality. Law is disturbed that so many contemporary media accounts written by outsiders depict the people of Kalawao as passive victims rescued by a supernatural savior Damien. She's been out to change this perception.

"When I deliver presentations on Kalaupapa, I like to include the story about how before Damien arrived, one of the first of twelve people quarantined in Kalawao wrote to authorities demanding a newspaper—not food," said Law, pausing for a moment before explaining the import of this finding: "This shows us two important things: people fought hard to be connected. They were not giving up. Plus, they were not asking for food, because Hawaiian kama'āina who were already living on the peninsula had no intention to leave the 'āina that was theirs, and they were willing to help the first arrivals with leprosy."

In one of many reflections of the resiliency of the population, Law's book includes the first petition sent by the people of Kalawao to the Hawaiian Legislature stating their demand for decent treatment. The sparse language pulls no punches: "The land is not suitable for us. There is much rain, wind, rough seas and cold. It is this (weather)… causes to spread the disease among us… You have your health and we are sick."

Law's book points out that as time passed, the kama'āina were eventually asked to leave their ancestral land, a policy measure aimed at containing the disease. Law's informants underscore that without the neighborly support, the settlement soon began to experience starvation plus extreme social isolation compounded by separation from families; this may have been the ultimate indignity for people with leprosy, but Law questions the accuracy of a number of accounts suggesting that Hawaiian families simply turned their backs on their diseased relatives once they were removed to Moloka'i.

An unidentified young girl at Kalaupapa. Photo courtesy Anwei Law

"The whole notion of quarantine conflicted with the Hawaiian attitude that a sick person should never be abandoned," she said. As evidence that this, she includes eyewitness reports of kōkua, spouses or family members – even young children – who defied the authorities by sneaking into the Moloka'i settlement to care for a leprosy-affected loved one.

"As far as disease goes, the lesson that we see in these accounts is to always choose love over fear," said Law. "While people affected by leprosy accepted that their quarantine was a sacrifice they had to make to protect others, they just didn't understand why they couldn't be isolated in a location on their home islands," said Law.

When he arrived in Kalaupapa in 1847, Law's book implies that one of the most "miraculous" gifts was Damien's understanding of the collateral damage of isolation. Where church and government authorities alleged that people at Kalawao were behaving lawlessly, often implying that their disease was a punishment for their behavior, Damien's compassionate defense for them – presented in an excerpt from his journal – was that the root of the problem was a health policy mandating forcible separation of husbands and wives at Kalaupapa. The priest wrote: "(The separation) gives them an oppression of mind, which, in many instances, is more unbearable than the pains and agonies of the disease itself."

Where did the mid 19th century cleric get such a progressive perspective on the link between social and physical well-being, one which modern medicine is only beginning to back up with clinical studies? A stunningly simple answer comes from long-time Damien companion and leprosy patient Ambrose Hutchinson, who is quoted in Law's book as having seen Damien shed tears over the family he had left behind forever in Europe. Hutchinson praised the priest for wearing his emotions so close to the surface and displaying ordinary empathy.

So is this the mundane stuff that saints are made of? Law's book is not for sensation seekers, even though the Catholic Church verified that Damien had performed two miracles—a pre-requisite for sainthood.

Another Damien companion, Joseph Manu, never witnessed such acts, though his descriptions in Law's book indicate that the Moloka'i minister was widely revered, albeit for his everyday adherence to the Golden Rule expressed in his humble ways. In a journal entry that serves as the basis for the title of Law's book, Manu wrote: "(Damien) was poor but he never complained about it. He used to come to our house in Pelekunu. When we asked him if wanted something special to eat, he answered: 'Do not disturb yourself, I will eat what you have.' He was satisfied with a bit of taro, a piece of fish, and a glass of water."

In digging for this earthy angle on the soon-to-be Saint Damien, the first-ever canonized person with Hawai'i ties, Law is hoping that readers will see what she herself came to observe in the personal bonds she formed with descendants of Father Damien's colleagues and confidants featured in the book. "People who have had leprosy know where real meaning is to be found," she says, recalling in particular the one Christmas she spent in Kalaupapa. "It was wonderful, because there was no way to be tempted to go crazy shopping in the last ten minutes before the holiday hit. People there don't have that entrapment."

Law believes that the people of Kalaupapa as well as Father Damien, who eventually died from leprosy, learned from the trauma of their disease that "every human life has value." This realization, more than any mysterious miracle, is Damien's legacy, Law said.

In the book's epilogue, she emphasizes the modern relevance of this legacy:

"In the 21st century, the challenges surrounding leprosy are related to the realization of identity, equality, justice, and human rights. Around the world, individuals long cured of leprosy, continue to be denied basic rights outlined in the Universal Declaration of Human Rights."

Law along with other members of the IDEA organization have, in fact, been consulting with the human rights council of the United Nations to authorize a worldwide dialogue on leprosy as a human rights issue. Part of this effort, Law says, might also involve adding one more title to Saint Damien's résumé: "We would like him to be recognized as a human rights activist," she said. For now, this 145-page volume, humble in size, serves as a huge reminder that even if history has proven over and over that discrimination around disease breeds more disease, history also resonates with voices of healing waiting to work miracles for those who are able to put aside fear.

Father Damien: A Bit of Taro, A Piece of Fish, A Glass of Water Father Damien: A Bit of Taro, A Piece of Fish, A Glass of Water is expected to be available soon at local book retailers. In the meantime, copies may be pre-ordered at idealeprosydignity.org or by calling 888-647-4939. Proceeds from sales of the book will go to benefit the IDEA Center.