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Overview
This fascinating cultural and medical history of leprosy enriches our understanding of a still-feared biblical disease.
It is a condition shrouded for centuries in mystery, legend, and religious fanaticism. Societies the world over have vilified its sufferers: by the sheer accident of mycobacterial infection, they have been condemned to exile and imprisonment—illness itself considered evidence of moral taint.
Over the last 200 years, the story of leprosy has witnessed dramatic reversals in terms of both scientific theory and public opinion. In A DISEASE APART, Tony Gould traces the history of this compelling period through the lives of individual men and women: intrepid doctors, researchers, and missionaries, and a vast spectrum of patients.
We meet such pioneers of treatment as the Norwegian microbe hunter, Armauer Hansen. Though Hansen discovered the leprosy bacillus in l873, the 'heredity vs. contagion' debate raged on for decades. Meanwhile, across the world, Belgian Catholic missionary Father Damien became an international celebrity tending to his stricken flock at the Hawaiian settlement of Molokai. He contracted the disease himself. To the British, leprosy posed an "imperial danger" to their sprawling colonial system. In the l920s Sir Leonard Rogers of the Indian Medical Service found that the ancient Hindu treatment of chaulmoogra oil could be used in an injectable form.
The Cajun bayou saw the inspiring rise of leprosy's most zealous campaigner of all: a patient. At Carville, Louisiana, a Jewish Texan pharmacist named Stanley Stein was transformed by leprosy into an eloquent editor and writer. He ultimately became a thorn in the side of the U.S. Public Heath Department and a close friend of Tallulah Bankhead.
The personalities met on this journey are remarkable and their stories unfold against the backgrounds of Norway, Hawaii, the Philippines, Japan, South Africa, Canada, Nigeria, Nepal and Louisiana. Although since the l950s drugs treatments have been able to cure cases caught early—and arrest advanced cases—leprosy remains a subject mired in ignorance.
In this superb and enlightened book, Tony Gould throws light into the shadows.
Product Details
| ISBN-13: | 9781466882973 |
|---|---|
| Publisher: | St. Martin's Publishing Group |
| Publication date: | 10/07/2014 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 432 |
| File size: | 9 MB |
About the Author
TONY GOULD served in the British military, then studied English at Cambridge. He has worked as a BBC radio producer and as literary editor of New Society and the New Statesman. His books include A Summer Plague: Polio and Its Survivors and Inside Outsider: The Life and Times of Colin MacInnes, winner of the 1984 PEN Silver Pen award.
TONY GOULD served in the British military, then studied English at Cambridge. He has worked as a BBC radio producer and as literary editor of New Society and the New Statesman. His books include A Summer Plague: Polio and Its Survivors and Inside Outsider: The Life and Times of Colin MacInnes, winner of the 1984 PEN Silver Pen award.
Read an Excerpt
A Disease Apart
Leprosy in the Modern World
By Tony Gould
St. Martin's Press
Copyright © 2005 Tony GouldAll rights reserved.
ISBN: 978-1-4668-8297-3
CHAPTER 1
A NEW DISEASE IN NEW BRUNSWICK
Leprosy is generally categorised as a tropical disease. But this is one of the many misconceptions about this most mysterious of maladies. Though a map showing the prevalence of leprosy in the world today would be overwhelmingly equatorial, in the mid-nineteenth century one of the main focal points of the disease was coastal Norway. Another was New Brunswick in Canada, where our story begins.
At about the time when the armies of Napoleon and Wellington were confronting one another for the final showdown at Waterloo, on the other side of the Atlantic in the English-sounding counties of Gloucester and Northumberland – where the vast majority of the inhabitants were French – two women, Ursule Benoit and Mary Gardiner, presented the first, ominous signs of an unrecognised disease. By the time of their deaths, in 1828 and 1829 respectively, or shortly after, it had spread to many of their intimates and been identified as leprosy. Joseph Benoit, the husband of the deceased Ursule, as well as her two sisters, Isabelle and Françoise, and one of the pallbearers at her funeral, François Sonier (who claimed that he had been contaminated with fluid oozing out of the decomposing body of the corpse when the sharp edge of the coffin had cut into his shoulder), had all developed the disease, as had two of the sons and a friend of the family with whom Mary Gardiner had lodged.
The communities of northern New Brunswick, such as Tracadie and its neighbours – whence nearly all the early victims came, from five interconnected families – were unflatteringly described in a local doctor's reply to a leprosy questionnaire circulated by the Royal College of Physicians in London in the 1860s:
The disease is entirely confined to the poor, who live in rude log huts, hardly sufficient to protect themselves from the inclemency of the weather. Usually there is but one room, which is occupied by pigs, poultry, &c., as well as by the family. They are poorly clad, and all around them betokens the most abject poverty. Their habits are indolent, improvident, and extremely unclean. In the winter months their diet consists solely of salt herrings, salt and dried codfish, and potatoes, at times salt pork; in summer they live on fresh fish; they have very little bread. They are chiefly employed in fishing, farming, and lumbering.
Social problems, as a more recent writer puts it, were 'washed away with a generous dose of Jamaica rum'. There were no amenities for the sufferers, whose sickness provoked alarm rather than pity among their neighbours. According to the Provincial Grand Jury:
The people ... generally shun the afflicted and have hitherto been in the habit of confining, in some instances, the Leper in a log enclosure constructed for the purpose and handing his food to him through an opening in the logs until he can no longer receive it when of course he dies. A practice most revolting to humanity and discreditable to the country in which it is permitted.
By the mid-1840s the disease, as well as the alarm, had spread sufficiently to demand action on the part of the authorities. Appeals from the local doctor and priest prompted the Lieutenant Governor of New Brunswick, Sir William Colebrooke, to recommend that 'provision should be made for the due care of sufferers, and with a view to prevent the spread of this distemper'. A commission of investigation (the first of many), consisting of three doctors and the local priest, traced the two dozen or so cases they found back to a single source, Ursule Benoit; but they could not say how she had acquired the disease.
No country or people likes to assume responsibility for an outbreak of disease – particularly a disease as 'frightful and loathsome' as leprosy – so the possibility that it may be home grown has to be dismissed and other explanations sought. The trick is to focus on individual immigrants (in this case, hypothetical escapees from lazarettos in Trinidad or Norway), or racial groups thought to be especially susceptible to the malady: in the late nineteenth century on the west coast of the United States, in Hawaii and the south Pacific, as well as in south-east Asia and Australia, the Chinese fitted this bill to perfection. If there are no obvious candidates for blame, then another scenario is fleeting contact with an alien source of contamination. So here the story got about that Ursule had contracted the disease as a result of washing the clothes of infected sailors belonging to a Mediterranean ship. But Ursule's aged mother, when she was interviewed in the later 1840s, denied that any of the sailors her daughter had befriended had had leprosy. It was also surmised that the disease had been imported from the French West Indies, which sent emigrants to Canada, or even from the Normandy district of France itself, where immigrants had been coming from since the end of the seventeenth century.
The commission identified the New Brunswick disease as Greek elephantiasis, 'the contagious "Leprosy of the Middle Ages"', and recommended a suitably 'medieval' solution to the problem – the erection of a lazaretto and the strict seclusion of all those affected with leprosy within its confines.
In April 1844 the newly formed Board of Health, the first of its kind in the province of New Brunswick, acquired the location for a lazaretto at a peppercorn rent; this was the abandoned island of Sheldrake in the mouth of the Miramichi River, not far from the town of Chatham. The island had been a quarantine station housing cholera victims as late as 1832, and the old quarantine sheds were still standing, though in a dilapidated state. Minimal repairs were undertaken and the priest at Tracadie, Father Lafrance, backed by Dr Alexander Key, set about convincing the afflicted members of his flock of the advantages to be had from allowing themselves to be removed to Sheldrake Island – comfortable accommodation, medical treatment, spiritual succour and, from time to time, family visits. He represented it as a place of refuge rather than imprisonment.
The reality was very different. The accommodation was basic: a kind of barracks divided into two dormitories, one for males and the other females, with no consideration of differences in age or severity of affliction; the rooms were dark and airless; the beds were wooden planks covered with palliasses and there was only one blanket per person; the washhouse was in a separate building and the latrines outside. The majority of leprosy sufferers had not been persuaded to leave their families and had either concealed their affliction or hidden from the authorities who sought to remove them to Sheldrake. But those who did go along – just over thirty in all – reacted angrily when they discovered what awaited them. Apart from the lack of amenities, there was no treatment worthy of the name and visits from the doctor and priest were few and far between. The only staff on the island were a man and his wife who had been hired to act as caretakers. The newcomers found they were expected to work – the women at domestic tasks such as cooking and cleaning, and the men on the land, cultivating crops or cutting down trees. From the start they refused to cooperate, spurning the pittance offered in return for their labour.
As far as the authorities were concerned, they were obstructive and ungrateful for all that was being done for them on the island. For the inmates themselves – exiled from their homes and families and everything they held dear – there was only misery and more misery in 'that dreadful pest-house'. The ones who accepted their fate became lethargic, dispirited and depressed; they neglected to look after themselves and ceased to care whether they lived or died. The more rebellious among them, however, concentrated on escape, turning logs into makeshift rafts in an effort to reach the mainland. At least one is believed to have died in the attempt.
The authorities condemned these escapes, or 'desertions' as they preferred to call them. The Board would send one of its members, accompanied by a constable, to apprehend those on the run, and this proved costly in time and money. They might succeed in catching one fugitive but the others would disperse into the depths of the forest, where they would remain hidden until they got word that the search party had moved on. Bernard Savoy was one of the unlucky ones: he was at home when the Board member and constable came. They trussed him up and were about to take him away when his father intervened, so they threatened the older man with a pistol. Not only had leprosy become a criminal offence, it seems; harbouring a 'leper', even if he were your own flesh and blood, amounted to aiding and abetting.
In February 1845, George Kerr, secretary-treasurer of the Board of Health, admitted in a report to the provincial government, 'There have been frequent desertions from the island', and sought the authority to lock up the offenders or punish them in some other way for their 'improper conduct'. Kerr conveniently overlooked the fact that it was the action of the Board of Health in ostracising them in the first place that was responsible for transforming law-abiding if stricken individuals into outlaws. It was a vicious circle. The House of Assembly inevitably gave the Board of Health the further powers it requested, and the inmates of Sheldrake were no longer allowed to wander about the island as they pleased, but were confined to the main building of the lazaretto and only let out for exercise at specified times. Armed guards were employed to prevent further escapes, and visitors were not allowed on the island without the written permission of a Board member. If it had not been a penitentiary from the beginning, Sheldrake was fast becoming one.
One night in the middle of October 1845, even before the new regulations had come into force, the lazaretto was destroyed by fire. Despite the hour of the blaze, between four and five in the morning, all the inmates managed to escape along with their meagre bedding and clothes, so there was no doubt who'd started it. This act of arson prompted a yet more draconian response from the authorities. A new building that was cheaper to heat went up in November; the yard was surrounded by a high picket fence and at night the gate was locked to prevent escape. As Drs Robert Bayard and William Wilson, two New Brunswick doctors who opposed the Board of Health's policy of locking up the afflicted, wrote in 1847: 'The building is not well suited for the purposes of a hospital.' But by this time all pretence that Sheldrake Island was any kind of refuge for sufferers from leprosy had been abandoned.
Unlike Dr Key, who believed that leprosy was contagious, Bayard and Wilson thought it was hereditary. In their 1848 report, they recommended as an alternative to the lazaretto that victims of the disease be maintained at home, as there was no likelihood of infection and families often became destitute when the breadwinner was sent away. (But being hereditarians they also recommended as a prophylactic measure that intermarriage in families where it prevailed should be forbidden; quite how this was to be achieved without preventive detention is hard to imagine.) For his part Dr Key did not deny that there might be a hereditary factor that predisposed certain people to get leprosy, but he argued that the fact that the disease ran in families was hardly conclusive evidence of heredity, the close proximity of the afflicted being far more suggestive of contagion.
A measure of the provincial government's uncertainty over how to handle the problem was the number of commissions of investigation held between 1844 and 1858. There were no less than nine in just fourteen years, six of them taking place in the critical three years between 1848 and 1851, when the failure of Sheldrake either to provide protection for the healthy community or to alleviate the sufferings of the afflicted was recognised. But in the face of conflicting medical advice the provincial authorities did nothing – until Father Lafrance successfully petitioned on behalf of his parishioners to have the lazaretto relocated at Tracadie, 'within sight of their Chapel and within hearing of its Bell', and a new Board of Health was created to run it.
Tracadie was home to the patients, and when the new lazaretto opened in September 1849 they were glad to find a bigger and airier building and better facilities than had been provided on Sheldrake Island. The new Board of Health was intent on pursuing a more liberal policy than its predecessor and allowed frequent visits from family and friends, so to begin with all went well. Hopes soared among the patients when Father Lafrance introduced an ex-surgeon of the French navy, Dr Charles La Billois, into the lazaretto. La Billois's first impressions were unpromising:
I must frankly state that I never saw a spectacle more calculated to harrow the feelings of humanity. The stench was so intolerable from putrefaction, that it required the greatest determination even to undertake the treatment of the unfortunate so situated, and so far advanced in the disease ...
But during his relatively brief, unauthorised spell there, La Billois became extremely popular with patients and their families alike; not only did he talk confidently of curing the disease, he also took a personal interest in the afflicted. It is true, he treated leprosy as though it were 'inveterate syphilis' (a common misapprehension in those days, as we shall see); but that did not deter the patients or prevent other sufferers in search of a cure from volunteering, for the first time ever, to enter the lazaretto.
Treatment with mercury, whatever it did for syphilis, had an adverse effect on leprosy, as Dr Key had earlier discovered when a patient died under his ministrations. But hope itself can do wonders, at least in the short run, and La Billois's confidence rubbed off on his patients, who felt better for having him around. Unfortunately, the good doctor overreached himself, claiming unlikely cures. Exposure inevitably followed: it turned out that La Billois had been admitting people with negative symptoms in order to release them again as cured. To the distress of his devoted patients, this 'self-styled miracle worker' was dismissed in 1852 and the government added insult to injury by refusing to pay him for his services.
For this and other reasons, the honeymoon period at Tracadie did not last. Family visits made the inmates restless, and the proximity to home had encouraged another round of escapes; on top of which, visitors had taken advantage of the more lenient regime to indulge in petty pilfering. The Board of Health cracked down: a new twelve-foot fence was erected. The inmates threw stones at the workers who were sealing them off from the outside world; and the authorities brought in guards to protect the workers. Visits were severely curtailed: to twice a year instead of once a month. Special dispensations to visit at any other time required the written authority of the priest. One patient, incensed by the lack of access to his children, protested bitterly and demanded the dismissal of the caretaker, who, he maintained, had 'insulted' his children and treated them 'like criminals'.
Once again the inmates resorted to arson. In the early hours of 5 September 1852 the lazaretto was razed to the ground. Instead of building a new one immediately, the authorities herded the inmates into what had previously served as a jail. Cramped into a suffocatingly small space, no less than eight of the thirty-eight inmates died that winter, a higher than usual rate of mortality. And when the new building went up the following summer, iron bars over the windows made the intentions of the Board of Health plain for all to see. They put spikes on top of the fence, too, and the inmates were locked up every night as soon as darkness descended.
Father Gauvreau, who had replaced Father Lafrance as priest and also served on the Board of Health, acted as liaison officer between the authorities and the patients during the 1850s. In person he was unimpressive, being short and podgy, but he did what he could for his charges, whose situation was now so bad that on one occasion he had to step over a corpse left on the floor to reach a dying girl to whom he'd been summoned to administer last rites. Throughout this grim decade, while the lazaretto stagnated, Father Gauvreau repeatedly petitioned the government to appoint a resident physician (there was a 'visiting physician', but he lived some seventy miles away and might as well have been on another planet). When the government continued to ignore him, the priest resigned from the Board of Health and went public with his story. In a series of articles published in two newspapers between May and July 1861, Gauvreau exposed the conditions at the lazaretto and succeeded with the pen where he had failed in person: the following March a resident physician was duly appointed.
(Continues...)
Excerpted from A Disease Apart by Tony Gould. Copyright © 2005 Tony Gould. Excerpted by permission of St. Martin's Press.
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Table of Contents
Contents
Title Page,Copyright Notice,
Dedication,
Acknowledgements,
Introduction,
1. A New Disease in New Brunswick,
2. The Father of Leprology – and His Son-in-Law,
3. The Martyr of Molokai,
4. Mr Stevenson and Dr Hyde,
5. An Imperial Danger,
6. Two Women with a Mission,
7. Veterans of the Spanish–American War, 1: 'Ned Langford' and Culion,
8. Veterans of the Spanish–American War, 2: John Early and Carville,
9. Sir Leonard Rogers and the British Empire Leprosy Relief Association,
10. Stanley Stein and the Miracle at Carville,
11. Peter Greave and the Homes of St Giles,
12. 'Saint Paul' Brand and 'Mr Leprosy' Browne,
13. Leprosy in One Country ... and Beyond,
14. A Kind of Closure,
Notes,
Select Bibliography,
Index,
By the Same Author,
Copyright,