Don't Fence Me In: leprosy in modern times Tony Gould Bloomsbury, 420pp, £20

The banished "leper" was once a frightening figure, a spectre conjured up in childhood, the legacy of empire and missionary propaganda. The terror-inducing disease with no known cure, which could strike without warning and which led inexorably to a "living death", was far more vivid in the imagination of the past 150 years than other threats to life and limb. Writers, revolutionaries and celebrities were in thrall to it. Graham Greene's travels to the leprosy settlement at Yonda in the Congo produced A Burnt-Out Case, and other novelists as diverse as Robert Louis Stevenson and Jack London, James Michener and John Updike, used leprosy as a background for their reflections on the human condition. Che Guevara's trip through Latin America 50 years ago, faithfully re-enacted in the film The Motorcycle Diaries, concluded with a visit to the San Pablo leprosarium on the banks of the Amazon, while Diana, Princess of Wales awoke ancestral memories by sitting with leprosy patients in Nepal and Indonesia to express her humanitarian concern.

In the modern world, this fearsome affliction, which is not unrelated to tuberculosis, has lost much of its power to shock. Fresh techniques of control and treatment, coupled with the more immediate global threat of HIV/Aids, have relegated the disease to a less prominent position in most people's minds. Yet leprosy remains a potent image - in mythic history, in the experience of empire and in present-day reality. Tony Gould's new study, beautifully written and constructed with craftsmanlike care, presents the people and the arguments of the past two centuries in sharp relief.

Despite the uncertainties that surround the disease, much is now known about it, and Gould found himself faced with a daunting supply of material. Sensibly, he confined his research to a dozen manageable storylines, from Essex to Bengal, from Louisiana to the Philippines, and from New Brunswick to Nepal. The book concentrates on the individuals who became involved in an extraordinary battle, as much against ignorance and prejudice as against the genuine ravages of an unpleasant disease. Often symptomless for many years, leprosy affects the nerves under the skin and eventually produces unsightly blotches on the surface, leading to the loss of fingers and toes, and often to blindness.

Part of the lasting stigma attached to leprosy in the west comes from the injunction attributed to Moses: "Command the children of Israel that they put out of the camp every leper . . ." Gould gently explains that the original Hebrew was mistranslated into Greek, and that the illness to which Leviticus also refers was a skin disease more akin to psoriasis (of Dennis Potter notoriety) than to leprosy, of which there was no trace in the Arab world in the biblical era. Gould also points out that the stigma was not confined to the Christian world. The Chinese and the Japanese have, on occasion, resorted to massacre rather than segregation to rid their societies of these unsightly sufferers.

For most of recorded history, those with leprosy were rounded up and "put out of the camp" in biblical fashion, incarcerated in leprosariums or isolation hospitals far from their families and friends, with the sexes carefully separated. It is as uncertain today where leprosy comes from as it always has been; so is why it occurs, though some now believe it may be spread through contaminated water. It appears to be infectious, though not dangerously so, and it is not contagious, although this possibility caused bitter debate throughout the 19th century. Several of those who worked in leper hospitals did in fact contract the disease, though it was apparently safe for Diana to caress leprosy sufferers as long as she did not stay too long to breathe in the bacteria they might have exhaled into the environment.

The leprosy bacillus was not detected until 1873, when it was first noted by a Norwegian physician, Gerhard Hansen, who worked in a leprosy hospital in Bergen. Leprosy is now more correctly referred to as "Hansen's disease" (while the term "leper" is banned altogether). The only known medicine in the 19th century was oil derived from the chaulmoogra tree of India and Malaya (and from the gurjun tree, found only on the Andaman Islands). So uncertain was its impact, and so vile was its taste, that it enjoyed no widespread use until it was made available in an injectable solution. A more effective treatment, known as dapsone, was developed in the 1940s. Sufferers today, if the disease is diagnosed early enough, will escape its worst effects.

The man who put leprosy on the 19th-century stage with a Diana-like intensity was Father Damien, a Catholic priest from Belgium who lived and died at a leprosy settlement on Molokai, one of the islands of Hawaii. His energetic pursuit of reform turned him into a worldwide celebrity, his exploits rehearsed in several hagiographic accounts, and he was soon channelling funds into distant missions, both Catholic and Protestant. Father Damien's death in 1889, inevitably from leprosy, coincided with the publication of a book by a Hampshire rector entitled Leprosy: an imperial danger, a text that focused attention on the apparent threat to the British empire in India and led to the passing of the Lepers Act 1898, which favoured enforced segregation.

The popular obsession with leprosy was indeed a phenomenon of the imperial age. The colonial authorities grew concerned when they realised that the disease could affect white people as well as the natives. South Africa and Australia were particularly stricken with panic. The British in India and the Americans in the Philippines devoted their energies to segregation. The imperial solution was to find some out-of-the-way island to which the sufferers could be sent, voluntarily or through coercion. Molokai was one, as was the small island of Culion in the Philippines, and Robben Island off Cape Town. Gould provides a wonderful introduction to the strange and dreadful societies created in these far-off places, redeemed only by a handful of heroic individuals, both doctors and patients.

In their disinterested zeal for privatisation, the imperial authorities farmed out much of the work to Christian organisations which, with their eyes open to the wider possibilities of converting the heathen, spread the word about leprosy, raised money and despatched volunteers. Although Gould is commendably non-judgemental, and does not deal directly with the downside of imperial rule, the book contains a depressing catalogue of misdemeanours by petty bureaucrats as well as more serious indictments. The scientists fascinated by leprosy went to inordinate lengths to prove their point. A convicted murderer in Hawaii was reprieved from execution in 1884 by agreeing to take part in a medical experiment that involved implanting a leprous nodule in his arm. He soon developed leprosy, but the value of the experiment was nullified when it was discovered that he came from a family with a history of the disease.

One episode concerns the strange and sad case of Kate Marsden, an English nurse who became the champion of leprosy sufferers in Siberia. Accused of being a leper herself, and forbidden to make her home in the United States as a result, she had earlier had "serious charges" preferred against her by the Anglican clergyman of the British-American church in St Petersburg. History reveals that she belonged to another of the 19th century's unfavoured minorities: she was not so much "a leper" as a lesbian.

The end of empire, coupled with fresh understanding of leprosy in the latter half of the 20th century and a dawning realisation that sufferers are usually better off living in the community, led to the closure of the forgotten camps that Gould writes about. His title comes from the inmates at Carville in Louisiana, the only mainland leprosy settlement in the US, who adopted the words of a popular song, "Don't Fence Me In", as their slogan. The irony is that many of the older inhabitants hung on for dear life. Once so angry and rebellious at their original incarceration, they were no longer able to contemplate life in the outside world.

Richard Gott's most recent book is Cuba: a new history (Yale University Press)

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