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Patients, from left, George Phillips, Ah Yip, Jim Lord, Ivon Skelton, Ah Pat and Pakira Matawai. Photo/Christchurch Anglican Diocesan Archives

New Zealand's shameful response to leprosy

Our response to an outbreak of the infectious disease a century ago reflected a stigma that was out of step with other countries.

The meat was rotten, the milk sour, the bread rat-eaten, the neighbours … less than friendly. In winter, storms barrelling up Lyttelton Harbour would batter the small huts on Quail Island, which housed New Zealand’s only leprosy colony for 19 years.

In 2010, historian Benjamin Kingsbury was living in Charteris Bay, overlooking the island, as he researched the spread and treatment of leprosy in the South Pacific. Increasingly, he turned his attention to New Zealand’s own experience of the disease and the slim archive holding the forgotten stories of the 14 leprosy sufferers who lived at historian James Cowan’s “dark-cliffed isle of the lepers”.

“The colony was on the southern side of the island, and looking out the window, I was very conscious of one of those miserable Banks Peninsula rainy, cold days [when] the sun did go down very early. The patients would have really felt the weather.”

Benjamin Kingsbury. Photo/Supplied

In his new book, The Dark Island, Kingsbury reveals the little-known story of the Quail Island leprosy colony: the cold, the isolation, the government ineptitude and inter-departmental tension, the wildly exaggerated scaremongering and a stigma that is as old as the only slightly contagious bacterial disease itself.

“All the days the plague is in him he shall be unclean,” growls the Old Testament. “He is unclean, he shall dwell alone.” In Medieval Europe the Catholic church advanced the association of leprosy with vice and moral failing, warranting the cruellest of punishments. “It had this kind of penumbra around it,” says Kingsbury. “The closest parallel in more recent times might be the panic around Aids in the 1980s – a disease that is not well understood, and for that reason all these other ideas get drawn into its orbit.”

The spread of the disease through Asia and the Pacific in the late 19th and early 20th centuries fuelled further panic. When Father Damien, the Belgian priest serving at Hawaii’s leprosy colony on the island of Molokai, died from the disease in 1889, the news sparked fears leprosy might work its way back from the colonies to Europe, where it had been absent for hundreds of years.

Chief Māori Medical Officer Peter Buck, right, helped leprosy patients. Photo/Alexander Turnbull Library

This fear was accompanied by desperately inadequate information. Until the late 19th century, when new bacteriological testing enabled more accurate diagnosis of leprosy, other skin ailments, such as psoriasis, syphilis and tuberculosis, were often confused with the disease. In 1890, the discovery that a reportedly “terrible outbreak of leprosy” in Northland was actually scurvy did not stop the story from appearing in a popular medical textbook as an “invasion of leprosy in New Zealand”.

Islands were favoured places for the isolation of those afflicted (the word “isolation” comes from the Latin insulatus, “made into an island”), and by the early 20th century, an archipelago of these “grim island colonies” had emerged across the British Empire.

But the stigma of leprosy in this country, says Kingsbury, was twofold. “One, the disease is physically horrible, the pathology was unpleasant, but there was also the anti-Chinese racial politics of the late 19th century. China was widely seen as a reservoir of the disease, so there was this fear leprosy was going to spread from the Asian population and indigenous peoples and take over new-settler colonies and maybe even go back to Europe.”

Leprosy most commonly attacked the skin and nerves on the hands and feet. Photo/Macmillan Brown Library, University of Canterbury

Compulsory isolation

Unlike other countries, New Zealand had no regulations for the control of leprosy. Instead, it was included in the list of “dangerous infectious diseases” gazetted under the Public Health Act and allowing for the compulsory isolation of patients. In 1903, Wellington greengrocer and Chinese migrant Kim Lee was found to have symptoms of the disease. He was sent to Somes Island in Wellington Harbour, but after complaints from other inhabitants, he was moved to the offshore islet of Mokopuna, where he lived alone in a crude shelter, kept alive only by the lighthouse keeper who, on fine days, rowed out with provisions. Eight months later, Lee died.

In 1906, Will Vallance was admitted to Christchurch Hospital with a mass of angry sores. Bacteriological testing revealed the presence of the leprae bacillus. It is thought he contracted leprosy in Queensland as a young man – symptoms of leprosy can take up to 20 years to appear. After a night at the Bottle Lake Hospital for infectious diseases, he was sent to Quail Island, previously used as a human-quarantine station for immigrants before it was turned into an animal-quarantine station for imported stock.

For the first year, Vallance lived alone in the cavernous and empty barracks, visited only by the industrious “Little Doctor” of Lyttelton, Charles Upham, uncle of the double Victoria Cross winner. Eventually, a small hut was built for him – a tentative step, suggests Kingsbury, towards setting up a leprosy colony by stealth.

There were few alternatives. In a blatant case of nimbyism, rumours that the Health Department was planning a leprosy hospital on Motuihe Island in the Hauraki Gulf triggered widespread alarm in Auckland. Suggestions the Quail Island patient would be transferred to a new colony on Kāpiti Island prompted further outrage. “The idea was to get them away as far as possible,” says Kingsbury. “Hawaii, Bay of Plenty – there were some fairly out-there propositions with little thought of the circumstances of the people they were talking about.”

In 1907, Vallance was joined by a Māori man from Ngāruawāhia, known only as GW. He was discharged a year later, his recovery attributed to a new treatment called Nastin, although this, says Kingsbury, is unlikely.

Charles Upham. Photo/Lyttelton Museum, Lola Muir Collection

The following year, Jack Whakahi was sent to the colony from Whanganui. Whakahi’s apparent recovery was attributed to chaulmoogra oil, an ancient treatment from India and the main medicine for leprosy until the arrival of the antibiotic dapsone in the 1940s. But a few months after he was discharged, he returned to Quail Island to care for Vallance.

“The Health Department said he had nothing else to do,” says Kingsbury, “but in my view he went back basically to help his friend. It was a great act of generosity but one not recognised at the time.”

Through sheer expedience, New Zealand’s first and only leprosy colony was taking shape. In 1912, a new caretaker was appointed. JHT Mackenzie was a religious man claiming to be part of a distinguished lineage of followers of Christ “who dedicated themselves to caring for the ‘lepers'.” But he was also unhygienic and an appalling cook. In the eyes of Robert Henderson, the Agriculture Department’s caretaker on the island, he was a “dirty leper contact”.

Tensions rose. In 1920, a public inquiry into Quail Island revealed an institution out of control: most of the eight patients were rebelling against the poor quality of their food; tradesmen were refusing to set foot on the island; one of the caretakers was threatening to throw his counterpart into the sea; the older huts were falling apart.

Part of this can be explained by the small number of patients – government investment was hard to justify for a handful of people. But the indifference, says Kingsbury, also reflects the strength of the leprosy stigma in New Zealand. Even as science gave new insight into the illness, “that fear remained”. Farmers with stock on the island worried their animals could be infected. (Although armadillos and a monkey species can carry the disease, few other animals can get leprosy.) There was a rumour that Lyttelton grocers were going to boycott the island because of the perceived risk of infection. Henderson warned everyone he spoke to not to touch anything that had been handled by a “leper contact”.

Quail Island in the 1950s. Photo/Alexander Turnbull Library

Sexually abused

Three years after the inquiry, Mackenzie was shot and killed by his 18-year-old assistant, Max Kissel. The resulting court case revealed Kissel had been sexually abused by Mackenzie over the previous 10 years (the then-novel defence of temporary insanity saved him from the noose).

“It was shattering,” says Kingsbury. “I had come to see Mackenzie as New Zealand’s Father Damien figure. Then I found the story of what he had been really doing, abusing his assistant and taking advantage of that spiritual prestige of looking after leprosy sufferers to carry out his own plans.”

Even without Mackenzie’s poor cooking and predatory habits, the Quail Island leprosy colony was not a patch on its counterparts in other countries. The 300 residents at the leprosarium in Makogai, Fiji, for example, fished, grazed cattle, grew a substantial part of their own food and took up crafts. The whole system, says Kingsbury, “was meant to provide them with an occupational therapy that would exercise their bodies and minds, while at the same time reducing the financial burden of the colony on the Fijian Government”.

Quail Island also differed from comparable New Zealand institutions. Mental asylums and tuberculosis sanitoria emphasised fresh air, exercise, gardening and various occupational therapies. On Quail Island, the fear of contagion – a fear out of proportion to the risk of infection – resulted in a very different approach. Leprosy patients were confined within a picket-fenced boundary. Dinner plates were left on a small table at the end of the fence that the caretaker would fill with food. They were not allowed to explore the island and visitors were rare.

The men’s hospital on Makogai. Photo/Macmillan Brown Library, University of Canterbury

Despite the scaremongering, changes were made. After years of requests, patients were eventually given permission to use a rowing boat. Clergymen and church groups began to take the embarrassingly short journey over to the island. As a result of the 1920 inquiry, a nurse, nurse’s assistant and handyman were appointed. In 1923, the government gave approval for new huts, new sanitary blocks and a lookout shelter. These never materialised. When Prime Minister William Massey heard people with the disease from Britain’s Western Pacific colonies were to be concentrated at Makogai, he asked Fiji if it would extend the scheme to include New Zealand patients.

Here, finally, was a way for New Zealand to fix a leprosy problem recently exacerbated by the successful escape of patient George Phillips, who passed himself off as a clergyman and was never caught.

The Health Department began fitting out the government steamer Hinemoa to transport the remaining eight men to Makogai (with characteristic lack of consideration, it initially planned to put the patients in the hold), and on August 29, 1925, the Hinemoa arrived at Makogai. Five of the patients would never see New Zealand again.

Today, Quail Island is a recreation reserve a short ferry trip from Lyttelton, a summertime place of school camps, picnics and mushrooming. Some of the original colony foundations and paths are still visible, a replica hut has been built and a white picket fence marks the burial place of 20-year-old Ivon Skelton, one of two leprosy sufferers to die on the island (although scientists failed in a 2015 attempt to find and exhume his remains).

All other evidence is gone. In 1931, the patients’ huts were demolished and the furniture sold. “It could have been out of shame,” says Kingsbury. “The colony was in such a bad state – the buildings were run down and the medical care was at an overall lower standard. After the patients had gone, the next step was to get rid of the memory. And that has been very successful – it is not a story people know a huge amount about.”

Yōhei Sasakawa. Photo/Getty Images

A global affliction

127 countries reported new cases in 2018.

Philanthropist Yōhei Sasakawa calls it “the oldest continuing human rights issue in the history of mankind”.

Leprosy is a chronic infectious disease caused by a rod-shaped bacillus called Mycobacterium leprae, discovered in 1873 by Norwegian physician Armauer Hansen.

There are various types and sub-types, based on the number of skin lesions and the degree of nerve damage. It generally affects the skin and peripheral nerves and can also affect the upper respiratory tract and the eyes.

Although the exact mechanism of transmission is not well understood, it is thought that a person needs to be in contact with an infected individual for an extended period to catch the disease.

In 2018, the World Health Organisation reported 208,600 new cases from 127 countries. Fifteen countries reported more than 1000 cases. Brazil, India and Indonesia accounted for 80% of new cases reported globally.

Drug treatment appeared in the late 1940s, with the introduction of dapsone. Today, the standard treatment for leprosy involves the use of two or three drugs.

This article was first published in the October 5, 2019 issue of the New Zealand Listener.