In Hawaii, Family Heals Scars of Leprosy

Jan. 22, 2009— -- Paul Harada was a 15-year-old vocational student when he accidentally touched a scorching-hot engine exhaust. As he pulled his hand away, the burned skin stuck to the metal pipe, but the teen felt nothing.

That day in 1941 was the first sign that he had leprosy -- a now curable, but still widely misunderstood disease that, without treatment, can lead to nerve damage or other disabilities.

The first drugs to control leprosy had been discovered that same year, but they were not introduced to Hawaii until 1946. Paul, like thousands of others living in Hawaii who were diagnosed with the disease, were isolated on Kalaupapa, a remote peninsula cut off from the island of Molokai by soaring 2,000-foot cliffs and three sides of rough ocean waters.

"At the time, going to Kalaupapa was kind of like a death sentence," said Paul's brother, Taka Harada, who was only 1 when his brother was sent away under state leprosy laws that were not officially abolished until 1969.

Torn from a family of 10 siblings, Paul began an odyssey of painful separation and stigma.

Though he was cured of the disease in 1954, Paul's letters were sterilized and on his first visit home, his younger siblings were not allowed to sleep in the same house.

For 63 years, he lived at the settlement until his death from cancer in 2008. His life was enriched by the strong bonds he was able to forge with family members decades after their separation.

For once-divided families like the Haradas, restoring lost family ties has brought healing. And for Hawaiians, embracing their painful past has brought redemption.

Father Damien to Be Canonized

This year, the Catholic Church will canonize Father Joseph Damien de Veuster, the Belgian missionary who lived among Hawaii's leprosy patients for 16 years. Until his death in 1889, he built houses, created a water system, nursed the living and gave proper burials to the dead.

Damien's body was removed from Kalaupapa and sent back to his home country in 1936 at the request of the Belgian government.

Until now, much of the historical research has focused on men like Damien, but today the group Ka'Ohana O Kalaupapa 'Ohana is giving a voice to the 8,000 patients who, though ostracized, led heroic lives in this loving and cohesive community.

"Society depicts these folks as recipients of charity in history, but they were active participants in many ways," said Anwei Law, a founding member of the 'Ohana.

"They gave money to causes and reached out beyond their own situations to help others," she told ABCNews.com. "Those with the disease and those who assisted under an unimaginably difficult situation, created a community that has inspired the world."

Today, Taka Harada works with the 'Ohana, which means "family," advocating for the rights of those with leprosy and helping families find lost relatives.

Mother Cried at Mention of Name

"I felt like I should know Paul because he is my brother, and yet I didn't know him," said Taka Harada, 68, a retired insurance manager who lives on Maui.

His parents, who were of Japanese heritage, rarely talked about Paul, and when the name was mentioned, his mother would cry. "We never really knew what was happening and never understood how they felt," he said of his parents' seeming stoicism.

But in 1965, Harada began an annual pilgrimage to Kalaupapa where he learned that his brother's life had been bittersweet. Paul found a loving wife of 50 years who had arrived herself at age 12. But they never had children; those who did had their babies taken from them at birth.

Historians say the story of Kalaupapa has often been racially charged and sensationalized, but the true narrative is one of love, loss and endurance.

"The Hawaiian people did not want to send family members away," said Law, who grew up in Hong Kong where her father, a doctor, worked with leprosy patients. "It's a story of great love and a great people."

Leprosy Reach Epic Proportions

By 1865, leprosy, or Hansen's disease, had reached epidemic proportions in the Kingdom of Hawaii. Numerous waves of foreign explorers had introduced the 3,000-year-old disease to an indigenous people who had little immunity. Fear spread and in 1866, King Kamehameha V signed a bill to isolate those with the disease.

In one heroic story translated from Hawaiian in 1906, Piilani describes hiding with her sick husband and son rather than be separated: "The chill or sorrow stole into my chest…seeing the power of government come hither to sever the sacred knot of holy marriage."

One of the least contagious of all communicable diseases, leprosy was once thought to be hereditary or a curse from God. A cure came with development of sulfone drugs, but the disease still carries a stigma in many parts of the world.

By 1980, Kalapaupapa was designated as a national historical park, dedicated to the preservation of its story. Today, 14 former "patients," all long cured, are still living in the small community among state and federal workers; another 10 are in a Honolulu hospital or living independently.

Surviving family members say that the memories of their lost ancestors were often hidden away out of pain, fear, and sometimes Western notions of shame.

For Anne Apo, the unanswered questions about her great grandfather -- John Taylor Unea – lay in a shoe box. The 49-year-old paralegal remembers finding the black and white photo of a "striking, impressive pure Hawaiian man, in a three-piece checkered suit, with a gold pocket watch, tie and a hat with a feather lei -- a face which held no story behind it."

Ancestors Gave Their Blessing

Apo's grandmother never spoke of her father -- "an impending silence always enveloped the room when his name was mentioned," she told ABCNews.com.

In 2006, Apo, who lives on Oahu, began her own research, but when she learned "Great Tutu" had leprosy, she closed the books. The information seemed "too personal to disclose" and an "intrusion" on his privacy.

But several months later while working for a Honolulu nonprofit, she received a grant proposal from Ka `Ohana O Kalaupapa.

"I found myself overcome and at a loss for words," she said. "This was a sign to me that my ancestors had given me their blessing and had come to show me the way to their past."

'Ohana was able to connect Apo with letters from Unea preserved at the Hawaii State Archives. "It was all divine intervention," she said. "He wanted us to know who he was and what he was about."

Unea was a "kokua" or helper, leaving his wife and family behind in the 1890s to care for his teenage son who had been sent to Kalaupapa. Appointed store manager, he was the settlement's "lifeline" to the outside world. He also served as a teacher and later conducted the settlement's first census in 1900.

Though Unea would get leprosy himself, he continued to give families living back home legal assistance with marital issues.

"For my family, learning about our great Tutu has brought us much consolation, encouragement and dignity, providing a sense of closure for our family tree, where we now can fill gaps that once were void," she said. "This for us is a lifetime treasure that we hold dear to our hearts."

Great-Great Uncle Worked With Damien

Through the help of the 'Ohana, Monica Bacon found she was the great-grand niece of Ambrose Hutchison, who had worked closely with Father Damien. The son of a Scottish father and a Hawaiian mother, he was confined from 1879 to 1932, serving on the board of health.

Bacon, an architectural historian from Honolulu, was able to visit Kalaupapa twice in 2008.

"Going there was an emotional voyage for me," she told ABCNews.com. "I was able to meet some of the patients and enjoy the physical beauty of the place, with its pristine ocean waters and tropical setting. But I also had to mentally go through the process of trying to fully comprehend the life that Uncle Ambrose and others had to live there, despite being in such a 'paradise.'"

The 'Ohana was officially formed in 2003 to ensure that Kalaupapa's history would be preserved. To date, they have helped dozens find photos, stories and the graves of their family members.

The group has assembled a growing digital database of the first 5,000 patients and is now raising money for a monument that will list the names of the estimated 8,000 people isolated because of the disease.

The 'Right to Be Remembered'

"We are returning what was taken away -- that right to be remembered in your own history," said Law, who lives in Seneca Falls, N.Y.

As international coordinator for the civil rights organization IDEA, which is partnering with 'Ohana to inititate discussions between countries on restoring family ties among those with leprosy.

"Unless you bring families back together, there is always stigma and things are never quite right," said Law, who is compiling the oral histories of 100 Kalaupapa patients and is also publishing a book on Father Damien to coincide with his entry into sainthood.

As for Taka Harada, he is ready to publish a collection of poems he wrote about Kalaupapa. He joined Paul, a pillar of the Kalaupapa Catholic community, at the 1995 ceremony of the return of Father Damien's "relic" -- a hand -- for burial.

Paul, a former sheriff at Kalaupapa who bore the scar of the engine burn his entire life, died last year. "Because of you," writes Taka Harada, "I am a better person…I am whole."

"I know Paul did not die bitter because of what fate had dealt him," said Harada. "He had felt in 1945 that he would die in 1950 because the sores and the disease began to wrack his body. He never dreamed that he would live to be 81 years old."

Taka Harada, who has been an ambassador for the 'Ohana in Japan, where separation policies only ended in 1996, shares his stories about the "spiritual and emotional" place, Kalaupapa.

"It reminds us never to repeat such wrong and cruelty done to our fellow human beings because of ignorance and prejudice," he said. "Their legacy is one of great personal sacrifice when they were separated from loved ones, their friends, their dreams."

"We've always had a tendency to discriminate and exclude people from society," said Harada. "What was important to Paul, when AIDS came out was don't discard them. This is the legacy of Kalaupapa. We want to make sure people remember and don't make the same mistakes."

Click here to learn more about Ka'Ohana O Kalaupapa 'Ohana and IDEA.