Hawaii’s Strictest Pandemic Policies Have Created A Lonely Existence For Kalaupapa’s Surviving ‘Outcasts’

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Author: Brittany Lyte
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Civil Beat

Jutting out from perilously steep sea cliffs, Kalaupapa Peninsula is a remote windswept outpost with a difficult history as the place where thousands of people afflicted with Hansen’s disease were banished to live segregated from the rest of society.

Conditions were so deplorable in the early and mid-1800s that being cast off to Kalaupapa was synonymous with certain death.

Nine patients remain of the many former leprosy patients who chose to continue to live in Kalaupapa despite the 1969 repeal of the Hawaii law that exiled them there until death.

Ranging in age from 80 to 97, these last living patients reside in the former leprosy colony on Molokai with support from the Hawaii Department of Health, which provides them with furnished homes, nursing staff and stipends for food and clothing.

The settlement’s non-patient inhabitants have made strides to reconnect with the patients, holding their hands when they speak as a gentle reminder that society is no longer afraid of them.

Enter the coronavirus pandemic.

The emergence of Covid-19 prompted state health regulators to impose aggressive restrictions to protect Kalaupapa’s former Hansen’s disease patients. Far stricter than pandemic rules enacted by the rest of the state, these policies have shaped a safe but lonely existence for the patients, who have not been permitted to see their families in the settlement since early March 2020.

As the pandemic enters its third year, most of Kalaupapa’s pandemic rules have not relaxed. A blanket no-visitor policy is still intact. Mandatory face masking and physical distancing rules remain in place — even in outdoor settings. Gathering is prohibited in groups larger than five.

Frequent telecommunications blackouts make life in Kalaupapa during the pandemic all the more isolating.

When despair set in following the non-Covid deaths of three former patients during the pandemic, one patient asked, “What is living?”

That’s according to Miki’ala Pescaia, who has befriended the patients and educates people about Kalaupapa and its sordid history as a Kalaupapa National Historical Parkranger.

“They were banished here to keep everybody else safe and now, a few years later, we’re flipping the script,” Pescaia said. “And it’s been really hard for them.”

The patients fear the virus, but they sometimes beg for forbidden hugs. Some of those who suffer from memory loss due to old age occasionally confuse living in lockdown from the coronavirus with earlier experiences of being shunned by the world as a leprosy patient.

“This is the second time in their lives that they have been put in an isolation situation because of a rampant disease,” said Richard Miller, a Protestant minister who moved to Kalaupapa almost two decades ago to work for the National Park Service.

“The irony, almost, is this time it was to protect them,” he said. “The first time it was to put them away from everyone and this time it was to keep the outside world and the problems of the pandemic away from them.”

“But the psychological or emotional reaction had to have been similar,” Miller said. “How could it not have been similar?”

‘We All Would Like It To Be Different’

A matter of debate: Was Kalaupapa the nation’s final county to get the coronavirus, or is it the only county that has evaded it?

The 10,700-acre peninsula, which is incorporated as Kalawao County and managed by the state health department, has so far reported a single positive Covid-19 infection, in December 2020.

But depending on who you talk to in the settlement, the person who tested positive was asymptomatic. And an antibody test later showed that the person probably never had Covid — a possibility the DOH said it did not have knowledge of but couldn’t rule out, either.

“Our one positive case was a false positive, but we were never able to undo that narrative,” Pescaia said. “So for us, we’re still Covid-free.”

But maintaining that status has taken a lot of sacrifice.

Before the pandemic, Kalaupapa had fewer than 100 inhabitants — mainly National Park Service employees and health workers — as well as up to 100 daily visitors on bus tours. Only about 40 people were left by early March 2020 when the pandemic prompted job furloughs and forced evictions for residents whose work there was deemed nonessential.

With travel to and from the remote peninsula restricted, the DOH initially introduced policies that allowed residents to freely recreate and exercise outdoors on their own, so long as they followed physical distancing and mask-wearing guidelines.

That strategy didn’t work, according to Ken Seamon, the DOH Kalaupapa administrator who helped develop pandemic policies for the settlement.

Kalaupapa residents include federal workers from the U.S. Postal Service and the National Parks Service, as well as state employees of the health and transportation departments.

Federal employees were hearing from President Donald Trump that mask-wearing wasn’t required, while state employees were hearing from Gov. David Ige that masks were mandatory.

On the ground, these mixed messages created problems.

So the health department decided to view the entire Kalaupapa peninsula as a care home, putting it under stricter Covid prevention rules than anywhere else in the state.

For months, Miller said the patients were so sequestered that it felt like they had vanished. The only people the patients could come in close contact with was the nursing staff.

“We are restricted in so many ways, which is difficult,” Miller said. “On the other hand, it feels like a very safe place. I don’t think anybody likes that you can’t have visitors or that we are all masked all the time and that we maintain all of the distancing requirements. But you just do it, whether you like it or not. We all would like it to be different, but so would the rest of the world.”

The patients have not been happy with these persistent restrictions on their freedoms, Seamon said, but they’ve been understanding of them, as well as appreciative of the DOH to the point of expecting the agency to keep them from getting Covid.

Unquestionably, Kalaupapa’s resident patients are at high risk of death or severe illness from Covid.

They continue to suffer from disabilities related to Hansen’s disease, such as long-term foot ulcers stemming from nerve damage and loss of sensation, as well as chronic conditions associated with aging, such as diabetes and congestive heart failure.

When a patient requires medical attention in excess of the kind of care offered in a nursing home, they’re flown to Oahu for more advanced treatment. Four patients resided at the 14-bed Hale Mohalu Care Home in Honolulu on a long-term basis last year.

“We miss them when they go out because we don’t know when they’ll be able to come back,” said Sister Alicia Damien Lau, one of two Catholic nuns who reside in Kalaupapa.

Another Christmas Without Gatherings

After the delta wave but before the onset of omicron, the DOH had planned to allow patients to receive visitors in the settlement for the first time since the onset of the pandemic.

But omicron’s arrival and swift spread across Hawaii quashed hopes for a repeal of the no-visitor rule.

“This Christmas they really wanted to see their families,” Lau said.

Kalaupapa’s aging telecommunications infrastructure frequently malfunctions, severing the settlement’s connection to the outside world. Weeks-long telephone, internet and cable television outages are routine. During stretches of the pandemic when doctors were barred from traveling to Kalaupapa for in-person visits, these outages curtailed the ability of patients to use telehealth to access timely medical consultations.

One such outage prevented at least one patient from talking to his family this past Christmas.

In 2018, Kalaupapa acquired 10 public Wi-Fi hotspots that provide an hour of free service as part of the rollout of 100 hotspots in state parks and other public spaces. But many patients don’t have smart devices to make use of the hotspots.

The delivery of an iPad to the settlement in late 2021, however, marked a bright spot in a difficult pandemic period for the patient who received it.

“This patient was just absolutely excited about the iPad, calling family on the mainland and FaceTiming,” according to Lau, who said the iPad was funded by grant money.

Lau visited Kalaupapa for the first time in 1965, at age 21, on the eve of her entry into the convent and before the repeal of the state’s forced isolation law for leprosy patients. She has intermittently volunteered in the settlement as a nun and as a nurse since the 1980s, moving to the settlement permanently in 2019.

She said the pandemic years have been quiet, sad and psychologically strenuous — above all for the patients, but also for the settlement’s other residents.

Lau hasn’t left Kalaupapa in nearly two years. She’s one of many residents who’ve opted out of travel to remain available for the needs of the patients.

In December, Lau made the difficult decision to stay put even upon the death of her sister.

“My goal is to be here until the last patient goes,” said Lau, who is 77. “So I’ve got to keep myself well enough to do that.”

At one point during the pandemic, Pescaia could not leave her home in the settlement for 11 consecutive weeks. That’s because her husband, also a park ranger, would hike out of the settlement every two weeks to check on the couple’s children in topside Molokai, a term for all the rest of the island outside of Kalaupapa, where they were learning remotely in the family’s home. Every time he returned to the settlement, the couple was subject to a two-week quarantine even though Pescaia hadn’t left.

For Seamon, the pandemic has stripped Kalaupapa of some of its character.

“It’s shocked me into a very small, small, small understanding of what the patients went through when they got here,” he said. “It’s not as much a home as it used to be for me; now it’s more so a job.”

‘The Magic Is Being Lost’

When the last patient dies and the DOH’s responsibility for providing patient care at Kalaupapa ends, there are big decisions to be made about Kalaupapa’s future.

Ownership of DOH property and infrastructure is expected to transfer to the Hawaii Department of Hawaiian Home Lands. It’s anticipated that the National Park Service will continue to lease the majority of the peninsula.

Ultimately the Hawaii Legislature will have the most say in shaping Kalaupapa’s post-pandemic, post-patient existence. Quarterly meetings gather stakeholders from the DOH, National Parks Service, Department of Hawaiian Home Lands, Maui County and the U.S. Department of Interior’s Office of Native Hawaiian Relations and other relevant agencies to coordinate emergency services in Kalaupapa, which has no police, firefighters or hospital, and to discuss the settlement’s uncertain future.

“Kalaupapa is never going to be the same,” Pescaia said. “There’s so much that has changed in the dynamics of the community, and rebuilding the new Kalaupapa post-pandemic is going to look way different. It’ll never, ever, be the way it was before.”

One reason for that, according to Pescaia, is that rebuilding a post-pandemic Kalaupapa will likely bring a sudden influx of new staff who will descend on the remote enclave in stark contrast to the way new residents have always slowly trickled in.

New residents are typically invited to join card games and volleyball games. They go fishing with the uncles. They talk story on the pier. They become acquainted with the spirit of the place through experiential learning.

They also learn about Kalaupapa’s unique set of rules put in place to protect patient mental health.

The patients were once subject to beatings for not wearing shoes. That’s because Hansen’s disease patients often suffer from nerve damage and loss of sensation. With bare feet, a cut on the foot could easily go undetected and grow infected. So the modern-day settlement has a rule: No bare feet.

Children under the age of 16 are prohibited from entering the settlement since patients were discouraged from having children. Parents had their newborn babies taken away from them out of fear that their disease would be passed on to their children.

Children under the age of 16 are prohibited from entering the settlement since patients were discouraged from having children. Parents had their newborn babies taken away from them out of fear that their disease would be passed on to their children.

The only time a child can enter Kalaupapa is at the request of a patient. But there are rules governing these visits to keep the child out of sight of the settlement where patients freely roam.

Absorbing new inhabitants into Kalaupapa incrementally and with great care is critical, Pescaia said, because this sort of initiation process helps protect the settlement from outside influence.

Although pandemic restrictions have made the peninsula practically impervious to the rest of world, Pescaia said the prolonged inability to gather has dampened Kalaupapa’s community spirit in irreparable ways.

“All of the magic is being lost now,” she said.

Civil Beat’s coverage of Maui County is supported in part by a grant from the Nuestro Futuro Foundation.

Brittany Lyte is a reporter for Civil Beat. You can reach her by email at blyte@civilbeat.org or follow on Twitter at @blyte

Source URL: https://portside.org/2022-01-24/hawaiis-strictest-pandemic-policies-have-created-lonely-existence-kalaupapas-surviving