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Leprosy and stigma in the South Pacific : camaraderie in isolation

Abstract
The oral histories utilized by this research reveal the experiences of those who suffered leprosy in five South Pacific nations, Fiji, New Caledonia, Samoa, Tonga and Vanuatu. This thesis explores how leprosy and its stigma impacted on the lives of these people, some of whom suffered decades of isolation at various leprosaria including the case of one New Caledonian resident for nearly seventy years. The testimonies of their experiences of diagnosis, removal into isolation, medical treatment and eventual discharge back to their homes implicitly contain descriptions of attitudes of stigma in their communities. This research reveals that where there is openness and knowledge about the minimal risk of leprosy contagion, as occurred in Fiji and Vanuatu from the 1950s, less stigma is attached to the disease. Nevertheless even in these countries, prior to the 1950s and availability of any effective medication, the fear and horror of the physical effects of leprosy was such that the victims were either cast out or chose to move away from their homes. This segregation led to groups of leprosy sufferers banding together to help care for each other. Once the policy of isolation in leprosaria was implemented, advanced cases of leprosy benefited from the better medical facilities and found opportunities for friendships and camaraderie. However, where the conditions at leprosaria were miserable and movements of the residents visibly restricted by fences, as occurred in Samoa and Tonga, there was heightened leprosy stigma. Perceptions of stigma varied from person to person and region to region. Higher levels of stigma were evident in New Caledonia, where leprosaria had been situated at former prison sites and strict isolation enforced, and in Tonga, where the removal of all leprosy sufferers had from the earliest days been associated with biblical strictures asserting that leprosy was a curse and the sufferers unclean. Following the availability of sulphone treatment in the South Pacific in the1950s and the improved medication in the 1980s, leprosy need no longer be physically disfiguring or disabling. Assisted by the generous donations gathered by the Pacific Leprosy Foundation in New Zealand to the medical services at the central leprosy hospital in Fiji, and by direct assistance to leprosy sufferers in the Pacific, the disadvantages that were imposed by leprosy in the past are disappearing and as one contributor to the project said ‘the time of darkness’ is ending.

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Thesis