Olivia Robello Breitha, battled leprosy and public's perceptions

LOS ANGELES -- If life had gone the way Olivia Robello Breitha planned it, she would have married her fiancé in 1934, would eventually have had children, and would have lived an ordinary life in Hawaii.

Instead, she was diagnosed with leprosy and sent into exile.

Mrs. Breitha, then 18, was taken from her parents' home and, like thousands of others, eventually was forced to live at Kalaupapa, an isolated Hawaiian peninsula on the island of Molokai. The disease, and the public fear of it, dictated where she could live, whom 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, Mrs. Breitha not only battled the physical effects of the illness, but waged a battle to reshape the public's perception of people with a disease that dated to biblical times.

Mrs. Breitha, a writer and an activist who advocated for the rights of people with leprosy, also known as Hansen's disease, 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, the international coordinator of IDEA, 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 Mrs. Breitha, survived a sad history, a time when confinement was thought to be the best response to a contagious illness for which no cure existed. She lived to hear talk of more confinements for people with AIDS and, most recently, bird flu.

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

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.

Between 1866 and 1969, more than 8,000 people were sent to Kalaupapa.

During Mrs. Breitha's residence, people forced to live there often remained until death. Visitors needed permission, and physical contact between residents and visitors 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 not touch. There were no children. Mrs. 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, because they would be taken away.

Over the years, Mrs. Breitha began to lose muscle strength in her hands, and eventually the fingers of her hand irreversibly curled toward her palms. Her skin lost sensitivity to heat and pain; eventually, the illness cost her the ability to walk.

In the mid-1940s, people with Hansen's disease took new drugs for the illness, and public perception and public policy began to change. In 1969, confinement laws ended.

By then Kalaupapa was home and some, like Mrs. Breitha, chose to remain there. Mrs. Breitha traveled in the United States and abroad, experienced the ballet and fine restaurants, and the joy of belonging, she said, ``to the world again."

The experience of exile left Mrs. Breitha deeply concerned about the rights of people with Hansen's disease and other illnesses. Mrs. Breitha 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 ``Dignity Bill" for Kalaupapa residents.