Kalaupapa resident turned prison of leprosy into forum for dignity
Olivia Breitha / 1916-2006
Olivia Robello Breitha's story of exile and her advocacy for justice and dignity for Hansen's disease patients have enlightened generations of people about a disease that was feared and demonized for centuries.
Breitha, 90, died yesterday in Kalaupapa, where she was sent in 1937, three years after she contracted Hansen's disease, also known as leprosy.
A 2003 edition of her 1988 autobiography, "Olivia: My Life in Exile in Kalaupapa," is sold in National Park Service bookstores and online. Interviews with her have been circulated internationally in newspaper and magazine stories and documentary films.
Breitha was one of three women, including survivors of the Holocaust and the Hiroshima atomic bomb, to be given the first "Voices of Humanity" award by IDEA -- which stands for Integration, Dignity and Economic Advancement -- the largest international advocacy agency for leprosy survivors. She and other Kalaupapa residents were honored at the United Nations in 1997 on the opening of a World Health Organization photographic exhibit about the accomplishments of leprosy survivors.
She continued to live in Kalaupapa after the century-long quarantine of patients was lifted in 1969. "What was once a prison is now a paradise to me," she wrote.
A funeral Mass was celebrated yesterday at St. Francis Church in Kalaupapa, and she was buried beside her late husband, John, who was also a patient.
"She left us with wisdom that will last for a long, long time and will continue to be part of things to make sure people remember," said Anwei Skinsnes Law, international coordinator of IDEA. She said that to describe Breitha by honors or publicity she received is not a true measure of her impact.
"When we think of honors, do we count the responses she had from people who read her book?" Law said. "It is one of the few books by people who had leprosy, especially women. It was very painful and hard for her to do."
Her cousin and literary executor Lorenzo DeStefano said, "She became an activist for the way she was treated over the years." A writer and film producer, he helped get the new edition of her book published.
"She said, 'I am not the disease,' and that was a message that enlightened a lot of people." DeStefano said Breitha continued to be an advocate. She testified at the state Legislature on death-with-dignity bills and provided testimony for a bill now before Congress to create a monument memorializing the 8,000 people who were banished to Kalaupapa over a century.
When Breitha heard the word "leper" used in an episode of the 1980s television series "MASH," she wrote to actor Alan Alda to educate him on what an offensive, pejorative word that is. She got a lukewarm apology, said Skinsnes Law. It was a lesson she repeated to others insensitive to the implication of calling someone an outcast.
"She was feisty, and the feist was well directed for social justice," said Kalaupapa nurse Loretta Zahner. "She was passionate about dignity and equality, about people being treated with fairness."
Breitha chose not to have children because she knew they would be taken away at birth as a condition of the quarantine.
"One of the things she loved most when we traveled was little children," said nurse Julie Sigler, her companion on trips to New York and Alaska. "With her wheelchair right next to their strollers, she was down at their level. They always gravitated to her."