Olivia Breitha, 90; Wrote of Living With Leprosy

If life had gone the way Olivia Robello Breitha planned it, she probably would have married her fiance in 1934, had children and lived an ordinary life in Hawaii.

Instead she was diagnosed with leprosy and sent into exile.

Breitha, then 18, was taken from her parents’ home and, like thousands of others, forced to live at Kalaupapa, an isolated Hawaiian peninsula on the island of Molokai. The progressive bacterial disease that attacks skin, flesh and nerves -- and the public’s fear of catching it -- dictated where she could live, who she could touch and if she would become a mother.

In a place that looked liked paradise, she was a prisoner.

“They catch you like a crook and you don’t have any rights at all,” she wrote in her memoirs. “They didn’t care about ruining a life. They didn’t even give me a few days to take care of my personal life. So be it. I was just a number. “

For the rest of her life, Breitha not only battled the physical effects of the illness, also known as Hansen’s disease, but waged an ongoing battle to reshape the public’s perception of those with a malady that dates to ancient times.

Breitha, a writer and activist who advocated for the rights of people with leprosy, died Sept. 28 of congestive heart failure at a care facility in Kalaupapa. She was 90.

“She wrote her autobiography to try and sensitize people to terminology, so they wouldn’t refer to people by labels that took away their identity and humanity,” said Anwei Law, international coordinator of Integration, Dignity and Economic Advancement, an advocacy and support organization for people with Hansen’s disease. “She was very opposed to the word ‘leper.’ ... She wanted people to know her as Olivia, for people to see her for who she was and not the disease she had.”

Today Kalaupapa remains home to a dwindling number of residents, who like Breitha lived in a time when confinement was thought to be the best response to a contagious illness for which no cure existed. She lived long enough to hear talk of more confinements for people with AIDS and most recently, bird flu.

Breitha was born June 6, 1916, on the island of Kauai to an immigrant Portuguese family. Life was ordinary and uneventful, she said in her memoirs, until stomach pains and a visit to the hospital in October 1934.

While she was being checked for appendicitis, a hospital worker asked if he could take a sample of her skin. Breitha agreed, not knowing she was being tested for leprosy.

Days later, after she was back home, a man showed up at the house asking for her, and Breitha let him in. As the two sat in the living room, the man, whom she would later refer to as “the bounty hunter,” informed the teenager that she had to go to Kalihi Hospital on Oahu.

“I asked, ‘Why should I go there?’ He said, ‘Because you have leprosy.’ ”

In an instant Breitha changed from “Olivia Robello, who was happily waiting to be married,” to a frightened girl, estranged from friends and family, none of whom had the illness.

Back then, a diagnosis of leprosy not only meant that sickness and death were likely, but also that life itself would be an isolated affair. People with Hansen’s disease were so ostracized, Breitha could not face her fiance, Les, and never saw him again.

At Kalihi Hospital, she became patient No. 3306. When she was photographed, a nurse wanted her to hold a board bearing not her name, but the number. A defiant Breitha refused. The photographer asked her to smile; she would not. “After you take my picture, you can get out of this place,” she recalled thinking. “I can’t go home.”

She lived at Kalihi until June 1937 and worked in the sewing room, patching bed linen and making pajamas for $9 a month. Her treatment consisted of so-called contrast baths, sprays of first hot and then cold water.

Still young and not exhibiting obvious signs of the illness, she sometimes ran away from the hospital to see loved ones or a movie. Shortly after one escape, she received a letter saying she was being sent to Kalaupapa.

The settlement, separated from the rest of the island by sea cliffs that rise 2,000 feet above the peninsula and ocean, was a case study in isolation. To reach it required travel by plane or boat to the island and a journey down a steep trail by mule or on foot. It could not be accessed by car.

Between 1866 and 1969, more than 8,000 people were sent to Kalaupapa. Once there, Breitha saw people she had met at Kalihi Hospital, but now she barely recognized them because the disease had disfigured them so. She also found friends there, people who cared for one another “and all prayed for the same thing -- a cure for this horrible calamity that had befallen each of us.”

In some ways it was like any community: There were churches, a bar, theater and movies, dances in a social hall, a store. Some residents did not or could not work. Others held jobs as clerks or fishermen. Over the years Breitha worked as an orderly at the settlement hospital, changing beds and serving meals for those worse off than her, and as a waitress.

Yet this community was distinct in tragic ways. Residents were forced to live there and often remained until death. Strict rules prohibiting residents from leaving were aided by the area’s remoteness. Visitors needed permission, and physical contact with residents was limited by a 6-foot-high chain-link fence separating them.

Contact between residents and those who assisted them, including church workers, was limited as well. Posted signs declared whom and what residents could touch.

“My gracious, a patient was not even permitted to touch any automobile that a non-patient rode in,” Breitha wrote.

The world of Kalaupapa did not include children. Residents were not allowed to raise their own, and no children were allowed to visit. Breitha married three times, each time to a resident of Kalaupapa who had Hansen’s disease. She and her last husband, John Breitha, agreed not to have children, even though she loved them.

“They would take your baby away whether you wanted it or not,” she told the Syracuse (N.Y.) Post-Standard in a 2005 interview. “I tried my best not to get pregnant.”

Sickness and death were a constant presence in Kalaupapa. Over the years Breitha began to lose muscle strength in her hands, and eventually her fingers began to irreversibly curl toward her palms. Her skin lost sensitivity to heat, pain “or the silkiness of a baby’s hair.” Eventually, the illness cost her the ability to walk.

“She dealt with chronic pain, but most of times she kept it to herself,” said Breitha’s cousin Lorenzo DeStefano, who survives her, along with another cousin, Clarence Silva, and nieces. “She was a very strong person.... Immediately when you look at her you feel so ashamed that you’re complaining. She lived through hell, literally.”

In the mid-1940s Breitha, like many others, began to take new medication that cured the illness. It was a watershed event for people with Hansen’s disease, and public perception and policy began to change.

In 1969 confinement laws ended. By then Kalaupapa was home and some, like Breitha, chose to remain there. Freed of the restrictions imposed upon her all her life, she traveled in the United States and abroad, experienced ballet, fine restaurants and the joy of belonging “to the world again.”

Breitha’s career as an author was prompted by what she described as an insensitive reference to leprosy on the TV sitcom “MASH.” She wrote “Olivia, My Life of Exile in Kalaupapa.”

The book, published in 1988 by the Arizona Memorial Museum Assn., helped “with the general public’s dispelling of myths about Hansen’s disease and about those who suffer the affliction,” said Tom Shaw, president and chief executive of the association.

The experience of exile left Breitha deeply concerned about the rights of people with Hansen’s disease and other illnesses.

She spoke out against the use of the word “leper,” which for her was akin to a racial slur. Last year, she played an important role in the Hawaii state legislature’s passage of a so-called dignity bill for Kalaupapa residents.

In the years before her death, Breitha argued that Kalaupapa, which is now a national historical park, should never become a resort.

“I don’t want them to just come here and think this is beautiful,” she said in a 2001 interview with the Honolulu Advertiser. “It came about as an ugly, ugly thing. I want them to know, and I want them to feel it.”

jocelyn.stewart@latimes.com