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Spectator
15 hours ago
- Health
- Spectator
The stigma still surrounding leprosy
One of the earliest leper hospitals in Britain was built in London near the beginning of the 12th century by Queen Matilda, the wife of Henry I. It was a benign combination of housing, hospital and chapel, with patients free to come and go as they wished. Matilda started a fashion among the wealthy, so that by 1350 there were more than 300 such hospitals across the kingdom. Far from lepers being shunned and feared as outcasts, therefore, their treatment for much of the medieval period was enlightened. 'The mythology of the 'medieval leper' seems no more real than that of the vampire or ghoul,' writes Oliver Basciano. The author is a journalist who has worked for the Financial Times and the BBC. His interest in lepers was prompted by unfounded claims from a Trump supporter that migrants were carrying leprosy into the US from Mexico. He says that Outcast is not a medical history; rather, it is a history of the stigma of leprosy. Basciano is often polemical; he invokes Susan Sontag, Michel Foucault and Edward Said to inveigh against the 'othering' of lepers. Whether such ballast is necessary is doubtful. The history he recounts is fascinating in its own right and also makes self-evident that victims of this horribly disfiguring disease have endured some of the worst ostracism of any social group. Basciano discovers that the demonisation of lepers in the media is nothing new. By the Victorian era the disease had left Britain but it persisted elsewhere, often in tropical climates. An authoritative literary magazine, The Nineteenth Century, denounced 'the dark cloud of leprosy' as a threat to empire and demanded that lepers should be segregated. It insisted that this was an advance on the medieval era, when – it falsely asserted – lepers were banished from society or even executed. Nevertheless, many lepers remained free under colonial administrations. Their biggest concentration was in India, where there were an estimated 1.5 million by the time of independence. The Raj did not segregate most of them, but that was more about economics than health policy, since it lacked the funds to do so. The failure to build institutions for lepers continued after 1947; as Basciano says, there was a 'lack of any proper policy from the Nehru government to deal with them'. Some of the stigma around leprosy lessened during the 19th century, due to heroic efforts by charismatic individuals. Basciano visits Siberia in the steps of the British nurse Kate Marsden, who was inspired by Florence Nightingale and undertook perilous journeys to tend to lepers in far-flung places. Marsden was lauded by Queen Victoria, but her career ended amid scandal around her sexuality. She was excluded from society in a fashion, Basciano observes, not so very different from many of her patients: 'None but a few of her grand friends wanted to be associated with a gay woman.' Scandal also descended upon the father of modern leprosy treatment, the Norwegian physician Gerhard Armauer Hansen, who established that the disease was spread by infection rather than heredity. Leprosy is often now referred to as 'Hansen's disease'. Unfortunately he also carried out procedures on patients without their consent, which means that his other, back-handed, legacy to medicine is the development of medical ethics. At the opposite end of the spectrum from Queen Matilda and her peers is 20th-century Japan, where lepers were rounded up and confined in what were essentially penal institutions, even after it became clear that segregation had little medical basis. Eugenics featured in health policy and many lepers were sterilised. Following lengthy campaigning, the government apologised and distributed compensation as late as 2001. No apologies came from members of the medical establishment, however. 'I still get the feeling that many don't think they did anything wrong,' reflects a former inmate. Cures for leprosy based on antibiotics were eventually discovered in the mid-20th century. Basciano brings his story up to the present with a surprise: leprosy is still with us. It remains endemic, for instance, in India, Indonesia, Brazil and Mozambique. Lack of public awareness means that it is a poor relation for funding compared with diseases such as malaria and HIV. Staff from the Leprosy Mission charity tell Basciano that fundraising is hard 'in a world that thinks the disease is long gone'. Politics is another problem. Basciano visits Mozambique and sees at first hand how a jihadist insurgency is undermining medical assistance. But greater difficulties may be in store. Outcast was completed before the current cuts in overseas aid, which could further hamper global action to eradicate leprosy. This would be tragic. Basciano uses an impressive level of detail to underline the reality that poverty and lack of access to medical services mean that lepers remain some of the world's most marginalised people.
Telegraph
02-06-2025
- General
- Telegraph
Leprosy never went away – here's proof
Leprosy, as Oliver Basciano notes in his fascinating and humane book Outcast, is more than an illness. It's a byword, a 'cultural artefact' that functions as 'a receptacle for nightmares and prejudice'; a kind of 'Ur-stigma' that has run through our collective nightmares for two millennia. Those who suffer from leprosy aren't just sick, but unclean. They were infectious and contagious long before infection or contagion were understood, and they still are, long after the latter were understood well enough to be tamed. Even though the reach of the disease itself has shrunk – from five million cases worldwide in the 1980s to a little under 200,000 today – the charge around it has not. Basciano's mission is to uncover the ways in which leprosy has been seen. He wants to provide something that's less a 'medical biography' of the disease than a cultural archaeology of the fears that become attached to it, and the ways they attach to other modes of isolating and casting out the 'undesirables' among us. While the medical facts are present, the resulting book – part history, part travelogue – is above all an analysis of the realities of prejudice and ways in which shared fears exert such outsized grips on communities. And, as Basciano tracks the disease from his native St Albans to Japan, via outposts across the world, it also becomes a meditation on the flipside of such fears: a hymn to the resilience of the cast-out and the lives they have managed to make. One medical fact shines out with painful irony: this symbol of contagion is not, in fact, all that contagious. 'Ninety-five per cent of the world's population', Basciano explains, 'is naturally immune', and most people with 'a good diet and the privilege of hygiene could spend a lifetime living with someone who is actively affected with the disease and not contract it'. For those who do contract it, Mycobacterium leprae, first isolated in 1873 by the Norwegian doctor Gerhard Armauer Hansen, is 'incredibly slow to replicate'. Its victims can remain asymptomatic for anything between five and 25 years, with the bacterium hiding out in the extremities of their body, in the far reaches of the nervous system, before the effects become manifest as a slowly increasing numbness. After that, the results can be devastating. Rashes or lesions appear – the 'scales' that give the disease its name, from the Greek leprós (scaly) – then 'damage to the skin, the upper respiratory tract, toes and fingers, the eyes and the inside lining of the nose'. As the bacterium proliferates, much of the physical harm to a sufferer's body is accidental: numbness allows knocks and cuts to go unnoticed, leading to secondary infection and scarring. Despite being treatable through a multidrug therapy that has been available since 1981, its capacity to lie dormant combines all too well with the vicissitudes of public health in countries such as India, Brazil and Indonesia. Slow diagnosis and poor treatment networks allow it to stubbornly persist. In Britain, where Basciano begins, leprosy has decayed into legend: a bogeyman of a half-real, half-imaginary medieval era. Searching out the meagre traces of a leper hospital, or leprosarium, built at the gate of medieval St Albans to house 13 devout sufferers in 1194, he outlines the gaps between the reality and the legend. Behind the 'cliché of the 'medieval leper'' with his rags and bell lay a more complex reality of leprosaria – some 19,000 across Western Europe, according to the 13th-century chronicler Matthew Paris – formed as religious communities, upheld by wealthy patrons, and run in ways that often accorded large degrees of agency and democracy to suffers. Leprosy could be seen – as in Chaucer 's 1380s poem Troilus and Criseyde – as a form of divine punishment; it could also be seen as a holy affliction, bringing the sufferer closer to God. Lepers might be subject to the same kind of persecution as Jews, yet they might be accorded surprising degrees of respect and autonomy, even to the point of being considered divine in their own right. Richard of Wallingford, elected as abbot of St Albans in 1327, remained in post despite falling prey to the disease, devoting his attention to designing and building a clock for the abbey while a coadjutor carried out the 'more strenuous duties'. The historical portion of Basciano's narrative continues with thoughtful chapters on Hansen and his promulgation of the doctrine of strict medical isolation for sufferers; on 19th-century contemporaries 'Father Damien' and Kate Marsden, who became celebrities for their dedication to the disease's victims; and on the leprosarium on South Africa's Robben Island, the isolatory regime that anticipated the apartheid government's incarceration of ANC activists there. Where the book really takes off, though, is when Basciano steps into the living legacies of leprosaria in the present, with trips to Romania, Mozambique, Brazil and Japan. Face to face with sufferers, Basciano's writing blossoms. In Mozambique, he confronts the realities of illness in a time of civil war, when aid programmes cease to function, diagnoses cease and patients disappear. In Japan, where forced sterilisations and abortions of patients continued long after the theory of hereditary transmission had been refuted, 720 patients live on in scattered sanatoria, winners of a long legal battle for recognition, simultaneously victims and members of a community on the verge of extinction. Leprosaria were refuges too, Basciano writes: places where 'utopian seeds' could take root on the stoniest ground, shielding their inmates from secret police, overriding nationalism, and even war. While the historical sections of Outcast are absorbing, Basciano's encounters turn this book into something altogether more moving and important. This is a cautionary tale: leprosy might be fading into history, but there is always another human 'contagion' to fear, if we let our fears control us. Deftly balancing learned and elegant reflection on illness and prejudice with the very human faces of the disease's sufferers, Basciano has crafted a quite brilliant book. It's a fitting tribute to outcasts who should never have been cast out.
