CRAIG T. KOJIMA / CKOJIMA@STARBULLETIN.COM People at the Hawaii State Archives are researching the records of patients with leprosy sent to Kalaupapa as part of an effort to get the federal government to erect a monument with names of the banished.

New project memorializes patients sent to Kalaupapa

STORY SUMMARY »

Fear of an epidemic led King Kamehameha V to act in 1866 to send all people who contracted leprosy into forced isolation in the remote Molokai peninsula of Kalaupapa. The banishment was continued as Hawaii evolved from monarchy to territory to state.

Between 1866 and 1969, nearly 8,000 men, women and children were taken from their families and lived under quarantine enforced by the Board of Health.

Former patients and their supporters have launched a project that would memorialize those who were banished. A computerized database would make it possible for people to trace family members. All of the names would be inscribed on a Kalaupapa monument proposed in a bill now before Congress.

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CRAIG T. KOJIMA / CKOJIMA@STARBULLETIN.COM Researchers working at the State Archives are collecting names of about 8,000 people who contracted Hansen's disease between 1866 and 1969 and were sent to Kalaupapa, Molokai. Among the patients listed on the first page of the Board of Health ledger, part of which is shown here: Father Damien DeVeuster, logged as patient No. 2,886 after he contracted the disease in 1886.

"Kahauliko, Lakapu, Kainaina, Waipio, Kapahu, Manaia ..."

The underlying hum of chatter in the Hawaii Convention Center crowd was hushed as old photographs flashed on a big screen and a list of Hawaiian names was read aloud. For the audience at the Council for Native Hawaiian Advancement conference, it was a dramatic demonstration of how many people of Hawaiian ancestry have family ties to Kalaupapa.

"We want this part of Hawaiian history to be remembered with honor and dignity," Kuulei Bell told the Aug. 24 audience.

Bell is president of Ka Ohana o Kalaupapa, a group working to ensure that the story of Kalaupapa does not fade after the last patient dies.

State archives list nearly 8,000 names of people who contracted Hansen's disease between 1866 and 1969 and were banished for life to the remote Molokai peninsula.

Bell, 74, is one of the remaining "historical patients" who were confined before the state lifted the quarantine in 1969.

Sulfone medication, developed in the 1940s, made it possible to control the disease.

People who contract it are now treated by their physicians.

"People were forcibly separated from their families for having leprosy," Bell told the crowd of 500 people. "They were able to survive extraordinary circumstances. There are only 30 of us left. One thing heavy in our hearts is the future of our beloved place ... to preserve the history of the land and the stories of our people."

At least 90 percent of the banished patients were Hawaiian, and that is why Ka Ohana o Kalaupapa took its story to the mostly Hawaiian convention crowd first.

Patients, church and community leaders and other supporters organized the ohana four years ago to address issues concerning patients and to plan the future of Kalaupapa. Their first success got dialysis treatment established at the settlement hospital thanks to a grant from the Office of Hawaiian Affairs.

Now they seek broad support for two long-range projects:

» The Kalaupapa Names Project shifted into high gear this summer. Researchers worked at the State Archives collecting names from old handwritten Board of Health ledgers. Nearly 8,000 names will be entered into a computer database as material for a planned memorial monument and as a resource for families tracing lost ancestors and relatives.

» Plans for a Kalaupapa monument were revived. On Aug. 2, U.S. Rep. Mazie Hirono introduced a bill in Congress calling for a monument with all those names inscribed. A similar measure authored by former U.S. Rep. Ed Case died in the last session.

The Board of Health registry, a 21-by-16-inch ledger, starts with 12 names of people who were sent by boat on Jan. 6, 1866. Although Hawaiian names predominate, the list includes Chinese, Japanese, Filipino, Portuguese and other European names. No. 2,886 is Father Damien DeVeuster, who went to the settlement to serve patients in 1873. He was logged in 1886 after he contracted the disease.

"Most people in Hawaii whose families go back a couple of generations have a connection to Kalaupapa," said Anwei Skinsnes Law. "When you read those names, the people come to life, out of anonymity and back into the family history, the history of Hawaii and the history of the world.

"It's important for people to feel the magnitude ... how many people this happened to. These were real people. Think how many family members that involved," said Law, who is leading the research project.

She is a founder and coordinator for an international advocacy organization for people affected by Hansen's disease. Her work as a researcher and advocate was set off by her father, the late Olaf Skinsnes, a University of Hawaii pathology professor who founded the leprosy laboratory at Leahi Hospital.

"I haven't met anyone who felt shame," said Law, who has interviewed patients for years. "When we talk to people, it's pain that we hear. It was too painful, a deep personal loss."

Anwei and her husband, Henry Law, have returned to their home in West Virginia with 5,001 names in a computer file. Henry Law, now retired, was the first National Park Service administrator at Kalaupapa.

On their next trip, they will tackle 20th-century records, which got more complicated because people were released after experimental treatment, only to be returned when it failed or moved back to the Kalihi hospital that was closed in World War II.

Anwei Law said, "We anticipate a computer database much like that at Ellis Island," where the names of immigrants to the United States are logged.

The state Legislature approved a $100,000 grant to support the ohana, said state Sen. Kalani English. It has not been released by Gov. Linda Lingle.

"Many of my family were exiled," Bell said, telling her story to the Hawaiian conference. "I never knew my father. He was sent when I was a baby. My grandfather was there in the 1800s.

"I was a child of 6 when I got the disease. At first the doctor told my Mom, don't let me go outside." But she was inevitably taken into custody by health officials, and lived the rest of her childhood in Oahu hospitals for Hansen's disease patients.

She moved to Kalaupapa in 1956 at age 24. She worked for 23 years for the state, serving as postmistress in the settlement for 17 years, and is a leader of the Mormon congregation. She has been a voice for patients' rights and causes for years.

DENNIS ODA / DODA@STARBULLETIN.COM Piolani Motta, second from left, who had relatives who were sent to Kalaupapa, and Kuulei Bell, center, a former Kalaupapa patient, go over a talk that they would later deliver at the Council for Native Hawaiian Advancement conference about Ka Ohana o Kalaupapa projects. With them are Pauline Hess, left, who also had relatives at Kalaupapa, and Ivy and Boogie Kahilihiwa, former patients.

Former patient preserves legacy of Kalaupapa

"People who go to Kalaupapa 100 years from now, I hope they don't think this was a prison," said Boogie Kahilihiwa. "It's a place where people lived out the rest of their lives. We've already established that we did."

Kahilihiwa, 66, has worked in heavy-labor jobs since he chose to go to Kalaupapa in 1959 at age 19.

He and his wife, Ivy, 70, were among hundreds of former patients who chose to stay in Kalaupapa after the state revoked the quarantine in 1969. The number of those entitled to permanent residency there has dwindled to less than 30.

He was 10 years old when he was taken from his family in Pahoa on the Big Island. He lived at Hale Mohalu in Pearl City, a state Department of Health residence for Hansen's disease patients. By that time, patients were treated with sulfone drugs that arrest the disease. They had the option of staying in the Oahu facility.

Meanwhile, "I was in and out of Kalaupapa to visit my sister and brother" both also patients. "I loved the place. I had been going there for the summer months. I decided to go. I didn't want to be a burden to my parents."

Kahilihiwa and others who worked for minimal pay throughout their years in the state-administered settlement won a political struggle to be credited for their work and be given civil service status and the right to a state pension.

He continues to be an activist with Ka Ohana o Kalaupapa.

"We want to explain what our hopes are for Kalaupapa," said Kahilihiwa. "Personally I'd like to see Hawaiians in Kalaupapa, coexisting with the National Park Service. If we don't talk now, before long it will be too late."

Mother’s death frees secret of banished kin

Piolani Motta of Honolulu found her grandmother's grave last year.

The discovery came nearly 20 years after she learned that her grandmother Becky Perry of Kohala had lived and died in Kalaupapa. It was a secret that her mother had kept for decades, and Motta only felt free to unlock it after her mother died.

Her search drew the retired Hawaiian Airlines employee to befriend the current Kalaupapa residents. She was a spark plug in the organization of the advocacy group that seeks a monument to memorialize all the people who died there. Motta testified before a congressional committee last year in Washington, D.C., and brought the testimony of residents in support of a bill to create it.

"My grandmother was a 14-year-old girl when she was sent to Kalaupapa in 1898. Her siblings were told that she died." Perry grew up, married twice, had four children including Motta's mother, Rose, and died in 1917.

Like all children born to quarantined leprosy patients, Rose was taken from her parents. She was raised by Catholic nuns at a Honolulu orphanage.

"She had a great education. She learned to play the organ, and they would take her to play at churches," said Motta. "She graduated from Sacred Hearts Academy and was a teacher there. She met my dad and had six children."

In the 1980s, Motta became interested in determining her "blood quantum" -- percentage of Hawaiian ancestry. "I had to get Mother's birth certificate, and when I saw the birthplace, I asked about it. She said, 'Who wants to know?'"

Rose did not know about the rest of her family and did not want to know: "She said, 'None of them came for me.'"

Rose Alana Perry Huleia died in 1996 at age 89, and only then did Motta start visiting Kalaupapa "to learn my mother's roots."

The grandmother's grave is one of only 1,300 burials that have been identified. With the passage of time and the devastation of the 1946 tidal wave, many existing gravestones are unidentifiable.

The final resting places of more than 6,000 people are unknown and unmarked.