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As she sits in her kitchen, Lindamae Maldonado flips through a photo album. The snapshots show an elderly woman with short, silver hair and round glasses, usually wearing a muumuu and always with a wide grin on her face. She has Maldonado’s swarthy skin, her dark eyes, her prominent cheeks.
But a closer examination of the woman in the photos reveals claw-like, concave hands: She has Hansen’s disease, commonly known as leprosy.
The pictures mark the last years of this woman’s life, much of which was spent at Kalaupapa — the isolated leprosy colony on Molokai. They also mark the first and only years Maldonado knew her as her estranged birth mother.
Maldonado, 62, is just one among likely thousands who were born to leprous patients exiled to Kalaupapa. The children were separated from their parents by the government, in many cases taken to other islands and put up for adoption.
She calls them the “lost children of Kalaupapa”: the products of a bygone era when the stigma of Hansen’s disease meant that the truth about their biological parents was hidden.
Some, like Maldonado, somehow stumbled upon their Kalaupapa origins late in life. Others, she suspects, died never having a clue.
For Maldonado, it all started with an unexpected encounter in 2003. She was living in Las Vegas when her adoptive cousin told her that her birth mother was a leprosy patient still living in Kalaupapa. As it turned out, Maldonado’s cousin was her biological aunt’s good friend.
She would discover a mother who had hardened into reticence, long-lost siblings and stories of a father who had already passed on. Her story would also reveal a side of Kalaupapa’s story that remains shrouded in secrecy.
Secluded from the rest of Molokai by massive sea cliffs, the Kalaupapa settlement has harbored 8,000 people diagnosed with leprosy since the 1860s.
Some of the adoptions were “hanai” — informal and typically set up with the birth parents’ relatives.
Others were handled by government welfare workers. Hawaii law, under Act 214 of 1931, required that the government take in and care for all healthy children born to leprous patients, according to John Tayman, a Kalaupapa scholar and author of The Colony. The children were put in the “care, custody and control” of the Board of Health.
Citing welfare workers’ records, Tayman says the Board intended “to improve [children’s] welfare and contentment, with a view to building up their morale; increasing their possibilities of development and happiness and thus enabling them to look forward to take their places in the community as normal and satisfied citizens.”
The babies were taken from their mothers right after birth, he says. “Mothers could not touch them, only watch them play or cry from behind the glass…”
The stigma surrounding leprosy was so great that incoming patients would sometimes identify themselves under aliases to protect their family names, says Michael Maruyama, chief of the Department of Health’s Hansen’s Disease Branch. But “the department knew that and went along with it because there was nothing it could do,” he said.
There is no registry of children born and taken away from Kalaupapa. Most of the related documents, including birth records, are in the Hawaii State Archives. But state law requires that 80 years pass before such information is made public. Thus, only records before 1931 are available.
In 1948, when Maldonado was born, leprosy was still widely stigmatized. Antibiotics that eventually treated and prevented the spread of the disease were just emerging, Maruyama says. Babies born to Kalaupapa patients were separated from and often lied to about their parents to protect them from “the burden of Hansen’s disease,” he said.
Maldonado was raised in Palolo Valley alongside five adoptive siblings by Catholic parents who she thought were her own. Their names were on her birth certificate. They knew she was born to Kalaupapa patients but chose not to tell her, Maldonado says, because they wanted to protect her from the stigma.
Soon after graduating from high school, Maldonado moved to the mainland and spent nearly 30 years living there, working different retail jobs. She would eventually marry and have three children before divorcing.
Upon learning of her Molokai roots, Maldonado was overwhelmed by conflicting emotions.
“I felt stunned, lost for words, amazed — but most of all, scared,” she said. “I felt sadness and a sense of hopelessness. My thoughts were of anger and hatred because for all these years, it was kept a secret. It was very emotional and draining for me.”
She was told her mother was Nellie McCarthy, a Maui-born woman who was 20 years old when she first arrived at the settlement. She became a house-call nurse, an active community and church member.
Although Hawaii lifted its leprosy isolation law in 1969 — more than two decades after medicine that treated the disease was introduced — some patients, like McCarthy, chose to stay. The settlement had become her home. She was, after all, known as Kalaupapa’s “Unsung Heroine”.
In 2003, McCarthy, then 82 years old, was still living in Kalaupapa. She hadn’t asked to see her daughter, but Maldonado packed her bags and flew to Molokai immediately.
“People take knowing their identity for granted,” says Maldonado. “But family only comes once in your life.”
Anguish over learning the truth so late in life quickly overwhelmed Maldonado. She began to hand write poems on spare pieces of folder paper.
The first, written on April 30, 2003, was titled “Kalaupapa”:
“Growing up not knowing what or who I am,
Loving and knowing a family I thought was mine,
Only to find out it was all a scam,
Oh God, please turn back the hands of time.”
When Maldonado visited Kalaupapa for the first time in 2003, she was overcome by its beauty. “There’s something that leaves your body on Kalaupapa,” she said. “You can just feel the aloha.”
But meeting McCarthy summoned a different kind of sentiment: a mix of sadness and loneliness. The woman she encountered was “programmed, brainwashed in a way…taken away from reality,” completely detached from Maldonado.
“When I caressed her and hugged her, I just felt that wall there, and it turned me off,” said Maldonado. “She wouldn’t let herself go, even though I was her daughter.”
Her mother avoided spending one-on-one time with her as much as she could.
“Every time we had free time, she would go to her room or tell me that she had to go help out at the hospital,” said Maldonado.
The time they did spend together consisted of tuning in to Korean soap operas at night or watching college women’s volleyball games with other Kalaupapa residents in McCarthy’s home.
The two hardly spoke. McCarthy would ask Maldonado about her children and grandchildren — but that was as far as their conversations went. McCarthy refused to talk about Maldonado’s father or her life in Kalaupapa.
“Our conversations? We had no conversations,” said Maldonado.
Still, Maldonado visited several times each year after her first trip and, she says, gained a presence on Kalaupapa as a sort of community odd-jobber — feeding the village pigs, helping out at one of Kalaupapa’s three churches, cooking meals for patient residents.
But even after meeting her, McCarthy never quite became the mother Maldonado thought she would find.
The Kalaupapa community didn’t seem to welcome her as family either. The Maui News’ Valerie Monson had interviewed Maldonado for her profile on McCarthy but never used it or even mentioned her in the story. No one called Maldonado to tell her McCarthy died in 2007 — Maldonado didn’t find out until after she was buried. She wasn’t acknowledged in McCarthy’s obituary.
Maldonado’s discovery had unveiled 55 years-worth of loss. “I can’t explain the feeling,” she said, looking out the rain-streaked window of her Kapolei townhouse. “Why were we pushed aside?”
“What has happened, what went wrong,
Was this a test to make me strong?
I was adopted, taken away,
Didn’t know anything until today”
(From her June 29, 2003 poem titled “Identity”)
Maldonado’s story is, according to Maruyama, not unusual. “You hear about it all the time,” he said. Unfortunately, he says, the DOH had no system in place to process and register babies born in the settlement who were put up for adoption.
At first, Maldonado resented her adoptive parents for never telling her the truth about her background. But she came to understood that they — perhaps just like her birth mother — thought they were acting in her best interest. (Maldonado’s adoptive parents died long before she knew about her Kalaupapa roots.)
“I was so angry at my adoptive parents,” she said. “But then I sat down and thought, ‘maybe they had to do that to protect us in that time and age.’ You can’t talk about leprosy, and they were trying to protect us.”
To this day, Maldonado’s birth certificate lists her adoptive parents’ names, leaving no available record of her relationship to McCarthy. It was as if the two had been permanently wiped from each other’s slates.
Indeed, connecting McCarthy to Maldonado via records is not possible.
The Kalaupapa patient files still preserved by the DOH may include medical records, family trees and DOH social workers’ write-ups. But those are only available to direct family members, Maruyama says.
“It seems to me like somebody made a conscious decision to keep [Maldonado’s] biological parents’ names off [her birth certificate],” he said.
According to Anwei Skinsnes Law, author of several books on Kalaupapa’s leprosy settlement and founder of an international leprosy advocacy organization, many parents, like McCarthy, agreed to permanently dissociate themselves from their children and leave no paper trail of their relationship.
“I think that some parents at Kalaupapa felt that it was better for their child not to be associated with Kalaupapa,” said Skinsnes Law. “This was to help them, not to hurt them.”
Maruyama agrees, noting that parents living in the settlement often times rejected their children so as to safeguard them against the shame associated with leprosy.
“No one talked about the children,” said Maldonado. “It was a taboo subject, because the people felt sad and ashamed. My mom was the way she was because she was so traumatized.”
Maruyama says there’s no way of knowing how many children were taken away. But he estimates that almost all of the women on Kalaupapa at some point gave birth on the settlement, indicating that the number could be in the thousands.
It pains Maldonado that the state government never helped to connect these “lost children” with any of their blood relatives, let alone their parents. The Family Court blocks access to much of the information — including birth parents’ names — on adoption records.
And, according to Maruyama, the DOH never had the capacity to track the children once their adoptions were arranged.
McCarthy had one other child: an older daughter who, just like Maldonado, was taken away from her mother and Kalaupapa after birth. McCarthy’s daughters grew up completely unaware of each other’s existence. When they finally met, the same year that Maldonado met McCarthy, they had an instant connection, says Maldonado.
But they had only four years together. Maldonado’s half-sister, who was born the year McCarthy arrived on Kalaupapa, died of leukemia in 2007, five months before their birth mother.
The what-ifs, more than anything, are what make Maldonado’s eyes well up, her jaw clench, her hands shake as she lists the family members she’s discovered since 2003.
“Everyone loved [my father],” said Maldonado. “But I knew nothing about him. My mother wouldn’t talk about him.”
All Maldonado can say with certainty about her father, Teofilo Carillo, is that leprosy forced him away from his first family, to Kalaupapa, and that he died in 1992.
It was only Labor Day last year that Maldonado met Melvin Carillo, her older half-brother on her father’s side — the brother who has since joined her mission to revitalize Kalaupapa’s families, including their own, as much as possible.
Carillo didn’t even get a glimpse of his little sister until she was 62 years old. They don’t share childhood memories — all they share are their exasperation over leprosy and the lost opportunities it generated.
“I never had a chance to play with her, take care of her like my other siblings,” said Melvin Carillo, who is now 74. “They just swept all the kids under the rug, covered it up and forgot about it. That is a sin.”
Maldonado only met three of her half-siblings: Melvin, her now-deceased half-sister on her mother’s side and another half-brother on her father’s side. Maldonado never got a chance to meet her two Carillo half-sisters, both of whom died before she knew anything about them.
Moreover, Maldonado was never able to network with other “lost children” or seek help or counseling for her struggle because, until recently, no associations, institutions or books devoted to them existed.
One nonprofit organization, Ka ‘Ohana O Kalaupapa, in 2008 and with the help of Kalaupapa expert Skinsnes Law, started compiling a database with the names of all Kalaupapa patients, along with any information gathered from vital records. Known as the Kalaupapa Names Project, it seeks to “help families reconnect with their Kalaupapa roots,” according to the organization’s web site. But as Skinsnes Law notes, only records from before 1931 are in the public domain due to historical records laws.
As of now, the project in effect recognizes the Kalaupapa patients and family members who have already passed away. President Barack Obama in 2009 signed into law the Kalaupapa Memorial Act, which has permitted the organization to establish a memorial listing the names of everyone sent to the peninsula.
“I believe this effort by Ka ‘Ohana O Kalaupapa is the first organized attempt to help individuals connect with family members, past and present,” wrote Skinsnes Law in an email.
Maldonado flips through newspaper clippings, her own hand-written poems, web page print-outs: notes and materials that attest to the hours she has devoted every day to seeking those answers. It’s drizzling, and her Kapolei townhouse is dim.
“There’s nothing that exists for us,” she said, her voice strained. “There’s no talk about the children. I wanted to know why no one found me.”
Maldonado invites any other “lost children of Kalaupapa” to email her at email@example.com.
“I am sure there are more children out there who know they were a part of Kalaupapa. And this will open doors, so we can reach out for one another, to talk about it and find some kind of closure. We, ‘the Children of Kalaupapa,’ should never be forgotten.”