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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FEATURE: Leprosy in the Pacific Islands

Ongoing research project records memories of past patients.

Interviews conducted are deposited in Macmillan Brown Library, University of Canterbury, New Zealand.* Permission to consult these and other records in the Pacific Leprosy Foundation collection held in Macmillan Brown library must be obtained in writing from: Pacific Leprosy Foundation, 115 Sherborne St., Christchurch, NZ.

It is easy when considering a terrible affliction like leprosy to forget the humanity of those with the illness and the capacity of some sufferers to return to normal family and working life despite periods of separation from their community and the physical ravages and marks of the disease on their bodies.
In August 2004 I accompanied an oral historian to Fiji in the South Pacific to participate in interviewing a group of people who had experienced isolation and separation from their families and communities on the island of Makogai, off the coast of Suva.
The transportation of people with leprosy from the Pacific region to Makogai Island began in 1911 when Makogai became the base for leprosy care in the Pacific. The Central Leprosy Hospital was built on the island with Fijian government funds and the support of the British Colonial Office. It was staffed principally by Roman Catholic nuns who volunteered to nurse the patients despite the stigma and fear of the illness at the time. The Central Leprosy Hospital served the South Pacific and patients were sent to the island by government health authorities throughout the region.
Such was the stigma and difficulty of treating the disease that patients feared that they were being sent to their death. However, of the 4,500 patients treated on Makogai only 1,500 died and remain buried on the island. Most returned home, their condition improved or in remission.

IMPACT OF DAPSONE

Wati Maria (left) and Polutele: old friends from the Makogai days

By 1969 the incidence of leprosy in the Pacific had declined and the facility was closed. Most of the few remaining individuals either returned home or were relocated to semi-permanent residential care at P.J. Twomey Hospital, built in the same year at Tamavua Heights, Suva, with funds from the New Zealand-based Leprosy Trust Board, now the Pacific Leprosy Foundation.
The closure of Makogai as a leprosy isolation and treatment area was largely a consequence of the emergence of Dapsone as the first antibiotic effective against Mycobacterium Leprae, the organism that causes leprosy. Although the later development of drug-resistant strains of leprosy in some of the Makogai patients was to dampen the hope of the drug as a complete cure, from the 1950s when it was introduced, it offered hope.
As an easily distributed and administered oral antibiotic the drug gave patients on Makogai the opportunity to be free from their disease and from the constraints of in-patient hospital treatment, which had previously relied substantially on painful injections of Chaulmoogra oil. More than this, the early effectiveness of Dapsone enabled most patients to return home to their villages and towns throughout the Pacific.
Visiting the P.J.Twomey Hospital in Suva and some of the homes and villages in the neighboring areas we interviewed 15 people . 10 men and five women, of whom 12 were from the Fijian islands, two from Tonga and one from the Gilbert Islands. Most had been brought as children to Makogai by government boat, leaving behind home, family, friends and their schooling. Some of those interviewed had been on Makogai during the early days of Dapsone treatment and had been able to return home well before the closure of the Central Leprosy Hospital, their illness under control, if not completely cured.
While leprosy undoubtedly caused physical and personal hardship, what surprised us was the number of patients from Makogai who had been able to return to village life despite their years away.
Volau was one man who after being sent to Makogai as a child had been able to return to his home village on Lakeba Isand after successful treatment with Dapsone. On Lakeba he had taken up a traditional life of farming, had married and raised children and, though he was in his seventies, was fit and strong when we met him. Diabetes had made necessary a temporary return to hospital for leg amputation and it was this, rather than his long struggle with leprosy, that he feared would inhibit his continued active life.

Some felt they would always be the refuse of Pacific society, 'thrown away like paper'.

Polutele and some of his shell carvings

Not all were so fortunate to be able to resettle at home. Some had no family to return to or felt unwelcome there. Others were unable to manoeuver a wheelchair in the confines of a village house and feared causing embarrassment to family unaccustomed to seeing them move around on the floor with their hands, the only other option when damage to feet and hands made either walking or moving with crutches impossible.
For those who remained at the hospital the friendships they had made at Makogai continued to sustain them and provided the core of community and home life they otherwise missed. They ate together and prayed together each day, shared the enjoyment of visitors and kept each other company through long and often tedious days. Many strived to practice some craft or trade.
Solute was an accomplished seamstress, continuing the skills taught by the nuns on Makogai to add to her income. Those men who were still able practised wood and shell carving, making pendants and earrings to be sold on the markets. Polutele, though barely able to hold a saw, still managed to carve out some beautiful shell work.

NEEDLEWORK

One of the happiest stories was that of Maria, who after spending her childhood and much of her adult life on Makogai returned to Fiji to live with her daughter, son-in-law and three grandchildren in a home built for them with funds raised by her son and his wife's family in America. Maria and her daughter worked together making and selling patchwork quilts, rag rugs and other needlework crafts, all learned from the nuns on the island.
The family also remained close to their friends at Twomey hospital and the children visit and play with their grandmother's companions from the island days without fear of the illness that had originally set them apart from home, community and friends. Sadly, Maria's daughter has died since our visit. Many of the former leprosy patients have also died since being interviewed.
The vast majority of patients left Makogai, their illness arrested, and went back to village and family life and so were not part of the small group we interviewed on this occasion at P.J.Twomey Hospital. Other visits to Pacific Island communities to talk with those who returned home about their experience of building new lives after Makogai form part of a larger ongoing research project.

All those interviewed in Fiji had endured physical and personal hardship because of leprosy. Some felt they would always be the refuse of Pacific society, 'thrown away like paper' but for others life had offered family, home, work and a relatively normal existence, illness and long separation on Makogai notwithstanding.
Despite their initial fear, most had very happy memories of Makogai as a beautiful island where they made close friendships and felt loved by the sisters who cared for them.

Funding for conducting these oral history interviews and preparing them for archival deposit was generously provided by University of Oxford, International Leprosy Association Global Project on the History of Leprosy, Wellcome Unit for the History of Medicine, 45-47 Banbury Road, Oxford OX2 6PE, United Kingdom. www.leprosyhistory.org/

AUTHOR: Jane Buckingham

Dr. Jane Buckingham is senior lecturer in History at the University of Canterbury, Christchurch, New Zealand. She has published on leprosy in India and has just won a Marsden research grant to investigate the history of leprosy in the South Pacific.