Once described by the writer Robert Louis Stevenson as a 'prison fortified by nature', the Hawaiian peninsula known as Kalaupapa has a dark history of medical segregation, death and forced adoption. Today, as Natalie Kestecher discovered, a small number of people once diagnosed with leprosy, or Hansen's disease as it's now known, still live in this Pacific paradise.

Kalaupapa is possibly the smallest county in the US, but its reputation in the Hawaiian Islands and across the world is enormous.

This remote peninsula has produced two saints. A comparable density of miraculous happenings in Australia would see us boast 121,478 (and a half) canonized citizens.

It’s also inspired a feature film, and provoked the ire of Robert Louis Stevenson, who famously called it ‘a prison fortified by nature’.

Kalaupapa used to be a leprosy settlement, after King Kamehameha V signed an act in 1865 to prevent the spread of the disease across Hawaii, authorising the forced isolation of those who showed symptoms. In January of the following year 12 men and women became the first of thousands sent to the Kalaupapa peninsula. Author John Tayman has described the colony as the ‘longest and deadliest instance of medical segregation in American history’.

In 1969, a couple of decades after drugs were discovered that arrested the contagion, residents were free to leave the settlement and go back to their families. But a number of people chose to stay. The ‘patients’ (as they are known) are now all over 70, and live with the knowledge that this village will probably only exist until the last one of them dies. There are 17 left.

I remember learning in primary school about the colony and one of its saints Father Damien. He was the subject of my social studies class and later the subject of a film by Paul Cox. Molokai, the story of Father Damien featured the Australian actor David Wenham in the lead role as the selfless Belgian priest. Wenham’s Flemish accent was superb.

So when I heard that the settlement still existed and that a small number of people who’d once been diagnosed with Hansen’s disease (formerly called leprosy) were still living there, I had to go and visit.

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Kalaupapa is on the island of Molokai and is at the base of some of the highest sea cliffs in the world. The cliffs cut the settlement off from the rest of Molokai, which the residents refer to as ‘topside’. There’s no road connecting the settlement to topside Molokai.

My travel companion, Milan, and I have just spent a few days on topside and we’re taking the six minute flight down to Kalaupapa.

The ‘Long House’, as it was called, is a rectangular building with two entries: one for patients and one for visitors. A bench separates the two parts of the hall, and in the past a mesh barrier also separated patients from visitors, much like the visitation rooms that you see in prisons.

The plane is tiny and I am a bit nervous but the only other way we could have got here is by mule trek down the sheer face of those towering cliffs.

Visitor access to Kalaupapa is very restricted and everyone who comes here must have a permit. The only reason we’re able to stay overnight is because one of the ‘patients’ Gloria Marks has agreed to invite us. She’ll be responsible for keeping an eye on us for the duration of our stay.

Gloria was diagnosed with leprosy, now called Hansen’s disease, when she was just 16, and, as was the policy in those days, was taken away from her family and community.

‘All I had were lesions on my face and my fingers were very swollen,’ she says.

She was transferred from a facility in Honolulu to Kalaupapa in 1960 at the age of 21, and is now the youngest female patient left in the settlement.

Gloria is a gracious hostess despite the fact that it’s not the most convenient time for her. Apart from looking after her businesses, a small tour company and a bar, she is preparing for a rather important trip.

She and eight other patients are going to Rome, to the Vatican, for the canonisation of Mother Marianne Cope, the nun who worked at this settlement for 30 years until her death in 1918. Mother Marianne isn’t the first to be made a saint for her work here. In 2009 Gloria also got to attend the canonisation ceremony of Father Damien who died of the disease in 1888 after 16 years of working here with the patients.

Nurse Julie Sigler, who’s lived and worked at Kalaupapa for 19 years, explains the disease.

‘Leprosy is bacilli which is a small little bug,’ she says. ‘There are two types. There is the lepromatous and the tuberculoid. The lepromatous is the more virulent of the two, it manifests with more pustules, it causes more nerve damage, it causes blindness.’

‘And it wasn’t until 1946 when they introduced these promine drugs, which is a kind of antibiotic, [that the disease was] arrested. The disease isn’t cured but it’s arrested and there haven’t been any outbreaks in the 19 years that I’ve been here. [T]hat’s why they were free to leave here in 1969 and go back to their families if they wanted to and travel if they wanted to.’

But, Nurse Sigler says, the majority of the patients stayed. Their disease carried a huge stigma at the time, and they often felt uncomfortable venturing out into the wider community. Their deformities—which in the most extreme cases include missing parts of their hands and feet, facial paralysis and sometimes blindness—often meant they were pointed at by children, which drove many to feel that their real home was Kalaupapa.

But despite the stigma, Hansen’s disease is not actually that contagious, Nurse Sigler says.

‘Around 95% of people have an immunity to it, only 5% can actually get it. But Father Damien probably contracted it because he not only had open sores from doing his carpentry work, he ate with the patients, he bandaged the patients, and he was scolded many times for not washing his hands. Now not one of the nuns who ever worked here ever got the disease because they were very hygienic.’

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Despite her age, Gloria is a woman who likes to be behind the wheel. And even though she was instrumental in introducing a speed limit for the tiny settlement she often breaks it.

Her husband, the late Richard Marks (also a former patient), was the last sheriff of Kalaupapa and even he couldn’t contain Gloria’s penchant for breaking the speed limit.

‘Sometimes I make my own rules,’ she says.

Gloria says that although her late husband once threatened her with a speeding infringement, she never had to pay a fine—it was just a warning.

As we drive from the tiny airstrip toward the settlement we see a lot of graves. Between 7000 and 8000 people are estimated to have died here from the time that the forced isolation of patients began. I’ve heard it said that every Hawaiian family has some kind of connection to those who are buried here. Gloria and the other 16 patients who remain here will mark the end of this history, a history that they hope will be remembered.

Ka 'Ohana O Kalaupapa is a group of descendents of patients and their friends. One of the mammoth tasks they have undertaken has been to try and collect the names of every patient sent here. This is difficult, especially given that many of the patients who came here didn’t use their real names: many changed their names so as to avoid bringing shame or embarrassment to their families.

We continue driving through the settlement and pass the bus depot. It turns out that the buses are also Gloria’s. She and her late husband set up a tour business in the 1960s now known as ‘Damien Tours’. The memory of Father Damien is the main enticement for the small number of tourists that make it to Kalaupapa and those who do are obliged to do Gloria’s tour. They’re not allowed to wander around the settlement unsupervised.

Gloria drops us at the visitors’ quarters. The building is the original and very simple. There’s a single bed in each room with old lino on the floors and share bathrooms. But what the building lacks in detail and decor it makes up for in location. It’s right by the sea, in between palms and flowers, with Molokai’s immense cliffs in full view. But the historic building next door is a sobering reminder of why this settlement was set up in the first place.

The ‘Long House’, as it was called, is a rectangular building with two entries: one for patients and one for visitors. A bench separates the two parts of the hall, and in the past a mesh barrier also separated patients from visitors, much like the visitation rooms that you see in prisons.

We break for lunch—three bean mix and instant coffee that we brought down with us from the topside. We had strict instructions to bring all of our own food, as supplies here are limited to rations for the patients. The only thing you seem to be able to buy is drinks thanks to, you guessed it, Gloria’s bar. Large Items like stoves and fridges come in on the barge. Because the population is so small these days this only happens once a year so ‘Barge Day’, as it’s called, is even more important than Christmas .

This part of the peninsula is not the original site of the settlement. The original was on the other side in a place called Kalawao. The weather conditions were so harsh over there that it made growing food extremely difficult and eventually King Kamehameha V gave his permission for the settlement to be moved to its current location.

Kalawao is where the Belgian priest, Father Damien, started his work in 1873 and later that afternoon we head off with Gloria to see what’s left of it.

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Gloria explains that in the early days of the settlement the patients were brought to Kalawao by ship.

‘The patients used to be dumped off the ship and had to swim to land,’ she says. ‘And if they couldn’t swim they drowned.’

Once ashore, they were expected to grow their own food and build their own shelters. I try to imagine the lives of the people that lived here at that time: banished, sick, isolated and having to fend for themselves. By the time Father Damien arrived there were already more than 800 patients here.

‘He was a builder, a priest, he made coffins, he dug their graves, he was a doctor to them,’ Gloria says. ‘He was everything.’

We drive a bit more and then we pull up in front of Father Damien’s church. Gloria explains that the only part of Father Damien buried here is his right hand. His remains were sent to his place of birth in Belgium in 1936 despite his request to be buried here. His hand was returned in 1996 at the patients’ request.

Gloria and all the other patients had hoped that Paul Cox’s film about Father Damien and the early days of the settlement would be seen around the world. She shows us some of the locations where sets were built for the film.

‘All the patients were extras,’ she says. ‘Except for my husband, he played Father Damien’s right-hand man.’

Although the film did reasonably well in Australia, director Paul Cox doesn’t believe it was the film that it could, or should, have been. Throughout the filming and later the postproduction there were a number of disagreements between the Belgian producers of the film and the director. Mr Cox was fired and rehired twice within the film’s making. The second time this happened both cast and crew refused to work with anyone other than Cox and rumour has it that the patients threatened to chase the producers off Kalaupapa unless their beloved director was rehired (which he was).

Gloria doesn’t bear any obvious signs of having had the disease so when she reached marrying age she was advised to find a husband on the outside, a non patient. But Gloria had heard too many stories of things going wrong in so-called mixed marriages. She says that in those days having a spouse with the disease was instant grounds for divorce.

‘I said no way, I prefer to marry my own kind and that way we can call each other names,’ she says. ‘So I married Richard Marks, the last Sheriff of Kalaupapa.’

I’d heard a lot about the late Richard Marks before coming here. The work of Father Damien inspired him to become an advocate for people affected by the disease. In 1968 he appeared on the cover of former US magazine Beacon with the words ‘I am a leper’ next to his photo. And in the same magazine he spoke out about the injustice of continuing to isolate people affected by the disease.

‘When the Department of Health got hold of that they were very angry about it,’ Gloria says. ‘They told him that they’re going to sue. They threatened him because you’re not supposed to use that word [leper]. He said, “You go right ahead. You know how ridiculous you folks are going to look?”’

The department never did sue Richard but a year later in 1969 the legislature repealed the hundred and four-year-old quarantine policy. He was named man of the year by Beacon in 1970.

Although Gloria had five children, one of whom died, all of them were taken off her—although luckily her parents were able to look after them. Not all of the patients had parents that could take their children so a lot were adopted out. Many never knew what became of their children and many descendants of patients never knew about their connection to Kalaupapa. These days there are organisations such as Kalaupapa ohana (family of Kalaupapa) that help people research these connections . Gloria was lucky not only because her parents took hers but also because she had access to some private accommodation outside of the settlement where her children and grandchildren were (and are still) able to visit.

She tells me that when her children used to visit when they were younger some of the patients would spend their rations on buying sweets and soft drinks for them. Some of the old patients used to come and park their cars near the airstrip so that when her children arrived they could come and listen to their young voices. Children under 16 are still not allowed in the settlement.

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Back at the airport, it’s early and there’s still so much more I want to ask, but it’s the memorial that Gloria wants to talk about and the future of this place when the last patient is gone.

Gloria hopes the authorities ‘leave Kalaupapa as Kalaupapa’.

‘They asked us what we want to do with Kalaupapa and we all said we like it the way it is. They should leave it alone. But with a memorial. We hope that memorial will come soon. While we’re all still living. I asked if our name will be on that memorial. They said ‘yes’. I said ‘well I hope so’. I said ‘I will come around and see it’. They said, ‘What do you mean?’ I said ‘I’d like to see if my name is going to be on that memorial’. They should put everybody’s name, not only those who have passed on but those who lived till the very last minute. I think you should acknowledge that too.’

When Gloria says that she’ll come around and check that her name is on the memorial I’m not really sure whether she is talking about while she is still alive or after she’s gone. Either way, I’d take her warning seriously. There is a strength and stoicism in Gloria that I certainly wouldn’t want to mess with: in this world or the next.

As we talk further, I realise for the first time that I haven’t actually seen Gloria standing. She always seems to be seated and yet she seems taller than all of us. There’s something mountain-like and regal about the way she sits.

Both Milan and I get a bit teary as we say our goodbyes. I can tell she is not into gushing but she lets us kiss her cheek.

Listen to 360documentaries on Sunday 26 May at 1005 am to hear Natalie Kestecher's full documentary report into modern day Kalaupapa.