Carville: Remembering Leprosy in America

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Seeing the disease as a threat to the Hawaiians' bodies and souls, Damien immediately establishes himself as the natives' spiritual savior, encouraging them to shed their barbaric customs by holding weekly mass and performing the sacraments. Since healthy individuals, even medical professionals, are not allowed on Molokai, Damien also serves as Molokai's de facto physician, setting up a hospital, installed with cots, in which Damien not only washes and bandages the patients' sores but also performs crude amputations when necessary.

While such interventions differ from the saintly interventions of medieval hagiography, in which a single touch from the saint could cure a pilgrim's disease, Farrow portrays Damien's rudimentary medical acts as nonetheless miraculous, in that Damien, despite having no medical training, was able to help his patients stave off death, at least for a time.

Marcia Gaudet

Damien is not, however, able to stave off the disease himself. A few years into his service on Molokai, Damien discovers that he has contracted the disease when he spills boiling water on his foot and feels no sensation, a symptom of the disease he instantly recognizes. He shares the news of his disease with his parishioners during Mass, when, Farrow recounts, "instead of addressing them with the usual My brethren , he had said, slowly and significantly, We lepers …" Farrow's retelling of Damien's contraction of the disease, his slow decline, and his eventual death is a highly contrived—and, indeed, hagiographic—account of Damien's so-called martyrdom on Molokai.

Even the account of Damien's announcement to his parishioners that he had contracted the disease is likely exaggerated, even inaccurate. Gould writes that Damien addressed his audience as "we lepers" for years before he contracted the disease; he argues that "it wasn't an affectation, as it might have been from the lips of another; it was a simple statement of identification: Damien embraced leprosy long before leprosy embraced him" In addition to such factual inaccuracies, many of the tropes of hagiography are on display in the biography's final pages.

Thus, for example, when Damien is on his deathbed, his assistant—a newly arrived priest named Joseph Dutton—asks that he be left Damien's mantle so that "like Elias, I may inherit your great heart" Dutton's request makes of the mantle a saint's relic, or an accessory of the saint's that could purportedly heal conditions like blindness, deafness, and broken bones. This comparison is not lost on Damien, who jokingly responds, "What would you do with it?

Even more so than the token of the mantle, the moments following Damien's death mark him as saint-like. When the Sisters of the St. Francis order subsequently examine Damien's corpse, one of them exclaims that "all signs of leprosy had disappeared from the face! The erasure of scars from the face and the absence of decomposition in the bodies of saints is a hagiographic commonplace; Reginald of Durham's account of the posthumous miracula of Saint Cuthbert, for example, narrates how Cuthbert's corpse, when examined, was found to be whole, pliable, almost uncannily lifelike—with flexible joints and an elasticity of the skin such that it seemed to breathe Tudor As the Sister's exclamation implies, Damien, like Cuthbert, displays a similarly miraculous postmortem appearance.

Farrow's hagiographic depiction of Damien is likely purposeful, as it aligns with the larger project of myth-making that surrounded Damien for decades after his death, and it is in the service of the myths that have attached to leprosy for centuries. In fact, Peter Richards notes that "most people have a natural resistance to the disease" xv. Native Hawaiians were particularly susceptible to leprosy because their years of isolation had not allowed them to build up an immunity to the diseases that the colonists brought to the island Gould Gavan Daws speculates that in Damien's case, his prolonged exposure to the leprosy bacterium, along with the fact that he inhabited an intimate and unclean environment at Molokai, likely played a role in his contraction of the disease Simply because Damien contracted the disease on Molokai, however, does not mean that contracting the disease is easy or, indeed, common.

Moreover, that Farrow chooses to preserve Robert Louis Stevenson's characterization of Damien's death as a "martyrdom," despite the progress made in the treatment of the disease in the intervening decades, implies that the disease was passed on by people who were not only physically ill but morally corrupt qtd. In many saints' lives, martyrdom occurs when ostensibly immoral pagans persecute and eventually execute a Christian saint.

Stevenson and Farrow, in calling Damien a martyr, thus equate the fatal passage of leprosy from the Native Hawaiians to the Christian priest with the pagans' killing of saints in hagiography, suggesting that the Hawaiians share the moral depravity of pagans. Farrow's purposeful mythologizing of the person he calls "Damien the Leper" ultimately illustrates the book's inherent diagnostic medievalism, or knowing use of misconstrued medieval paradigms of leprosy in the face of scientific evidence that would dispute notions of the disease's moral and medical contagion.

That this medievalist portrayal of leprosy appears as late as the s reinforces the point that is not the disease, but rather the stigma that is contagious, its cultural and metaphorical meanings sticking to individuals like sores that won't heal. At the entrance to the National Hansen's Disease Museum in Carville, Louisiana, there is a plaque that commemorates the lives of the patients who were treated at the in-patient hospital that stood at the site from to It reads, in part:.

Welcome to a community unlike any other in the world, many of whose residents experienced two opposite emotional extremes—one is extraordinary physical suffering, separation of families, endless psychological stress, emotional breakdown, and another is security, healing and comfort—a haven—a place to hide. Gaudet For over a century, Carville was the only hospital for people with leprosy in the continental United States.

Body Horrors

Following the passage of bill calling for the establishment of national leprosarium on the mainland in , people diagnosed with the disease were required to be quarantined at the hospital at Carville until the s, when patients were permitted to receive treatment at outpatient centers Moran Prior to the opening of the U. Public Health Service Hospital in , Carville was the site of the Louisiana Leper Home, a center for the treatment and isolation of leprosy that was managed largely by the Daughters of Charity of St. Concerned that leprosy would spread from Pacific and Caribbean territories to the mainland, a dermatologist at Tulane Medical School named Dr.

Isadore Dyer encouraged the Louisiana state legislature to establish a hospital exclusively for U. The decision to establish a center for the isolation of leprosy patients, Gaudet speculates, was likely due to the international fame of Father Damien, as well as the local fame of Father Charles Boglioli, an Italian Catholic priest who contracted the disease while serving as chaplain for a New Orleans hospital circa However, it is also likely that Louisiana leper home was originally intended to serve as a counterexample to the settlement at Molokai, which faced increasing protests from patients, who objected to the isolation and uncleanliness of the site.

As Moran explains, "In contrast to the colonialist assumptions that Hawaiians with leprosy were ignorant creatures who failed to appreciate the advantages of Western medicine, mainland medical practitioners depicted Carville's patients as eager recipients of modern science" In essence, Dyer and others promoted Carville as a site for an enlightened, American population who would welcome experimental treatments, as opposed to the primitive and "medieval" population at Molokai.

Yet even as medical professionals like Dyer presented Carville as a premier center for medical research, he and others continued to rely on the model of the medieval leprosarium as the primary solution to the disease. As the establishment of the Louisiana Leper Home, and later, the Carville hospital illustrates, the leper camps of Leviticus had a hold on the collective unconscious of Westerners, even as late as the s. Though fears of the disease were of a different stripe, based on its purported contagion rather than its moral connotations, approaches to its treatment were based on a misinformed understanding of the disease and its treatment in the Middle Ages.

At Carville, new patients, like the residents of medieval leprosaria as well as monks and nuns, were required to leave their families and their belongings behind. The leprosarium at Carville, however, added yet another indignity to the process of segregation, recommending that patients adopt a pseudonym for the duration of their stay at the hospital.

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Gaudet writes, "While being admitted to Carville, patients were encouraged to hide their true identities. Often not even the staff knew their real names" These names and numbers would follow them to the grave, literally: patients who died at Carville were buried in a cemetery on the hospital site and given a grave marker that included their Carville pseudonyms and Federal Register numbers.

Like the living funerals that purportedly took place during the Middle Ages, choosing a pseudonym and being assigned a number signified an unofficial death prior to the patient's natural death from the disease. Among the patients of Carville, including Stanley Stein, who published an account of his experiences at the institution in a memoir, the phrase "going under the pecans" became a euphemism for one's natural death and subsequent burial at the Carville cemetery, where there were several large pecan trees interspersed among the graves qtd.

In addition to an infirmary and a cemetery, the leprosarium at Carville had a library, a school, a bank, churches, a jail, a bar, and a golf course. Moreover, unlike most other places in the South during the days of Jim Crow, Carville did not segregate its patients by race, though it was by no means race-blind; even though the patient community was ethnically diverse, the minority population was often pushed to the margins when activists like Stanley Stein portrayed the residents of Carville as "average" Americans read: white Americans who deserved better treatment from their government Moran Still, the testimony of several of the patients reveals the close bonds many of the residents felt with each other, especially during Carville's annual Mardi Gras festival.

One patient named Louis Bordreaux recalls attending the festival with his wife: "We had beautiful miniature floats, the parade, and of course, a beautiful ball. We elected a king and queen" Gaudet Costumes were also integral to the festival; in the s, for example, patients dressed up as Dolly Parton, Mike Tyson, and the Surgeon General C. Everett Koop, who had visited Carville in Gaudet Mardi Gras offered a welcome opportunity to perform a new identity, while also participating in a ritual that was popular in nearby New Orleans.

As Gaudet explains, "To act in a carnivalesque mode is to be allowed the freedom to be 'abnormal' for a while. Paradoxically, to celebrate Mardi Gras, like other masquerade holidays, is normative—it is not only allowable but even expected that one will participate in the seasonal customs, particularly in Louisiana" In essence, Carville's Mardi Gras celebration let the residents of the leprosarium turn the stigma of the disease upside down.

Participating in the masquerade gave them the chance to partake in normative rituals, and even in some cases, to pass. For some of the patients, wearing a mask became a means of physical transformation in addition to a social one, for it was not only an opportunity to pretend to be someone else, but also an occasion to literally cover up scars and disfigurements.

While Gaudet reads this in mostly positive terms—as a kind of carnivaleseque performance—passing likely had unintended consequences for the patients who chose to participate. In Claiming Disability , Simi Linton explores the unintended effects of passing, explaining that the while the notion of passing has become familiar to members of both the African American and LGBTQ communities as well as the disability community, it can be to the psychological detriment of individuals who choose to do so. Linton observes, "For a member of any of these groups, passing may be a deliberate effort to avoid discrimination or ostracism, or it may be an almost unconscious, Herculean effort to deny to oneself the reality of one's racial history, sexual feelings, or bodily state" Passing, in other words, may allow one to manage the personal, social, and economic consequences of various forms of social stigma, but it can also result in the denial of one's true identity and, notably, the denial of history.

Passing blots out the failures or even the mundane successes of one's life by focusing solely on the "Herculean" achievement of overcoming one's disability by passing as able-bodied. For patients with leprosy, who had long been subject to medievalist stereotypes, taking part in the medieval masque could be means of reclamation, much like disability activists' reclaiming of the word "cripple," but it could also serve to reproduce the most dehumanizing medieval views of the disease, including the idea that leprosy is a moral disease in addition to a medical condition.

Given the isolation and infamy of the Carville hospital, it was likely impossible for the patients at Carville to ever fully pass, though they were allowed short, periodic trips outside of the institution. A costume may have covered up the physical scars, but the social stigma remained. Even if passing was not the ideal that Gaudet suggests it is, the annual Mardi Gras festival did present an occasion for play—a chance to minimize and mock the ever-enduring stigma of leprosy and to participate in a communal tradition that was popular both within and outside the institution.

The Mardi Gras Masque was, as Gaudet writes, "a great equalizer. In medieval carnivals, masked peasants and noblemen mingled together. In Venice, Italy, it is said today that the mask allows one to 'slip on a new skin. At least some of the participants claim to have found the Mardi Gras ritual pleasurable, even as it did not fully eliminate the stigma of the disease.

Dr David Scollard, Director, National Hansen's Disease Program "Leprosy is Not Si

This may have been due to the fact that the Carville festival, like the festivals in nearby New Orleans, celebrated medieval identities, such as the fool and the peasant, rather than weaponized them in the promotion of a stigma. The medievalism of the carnival, therefore, was liberating precisely because it allowed patients to turn medievalist stereotypes on their heads and to make so-called "medieval" identities the norm rather than the exception. According to the World Health Organization, an estimated , people were affected by leprosy in ; the majority of cases were found in India Singh n.

That same year, the United States reported only new cases; New York City saw just three reported cases, though a specialist in the disease, Dr.

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  • Louis Iannuzzi, believes that about half of leprosy cases go unreported Small n. Researchers believe that most people have a natural resistance to the leprosy bacterium, and since the s, a highly effective multi-drug therapy has been used to treat the disease. And yet, as exemplified by the cases of Father Damien, whose story of martyrdom rivaled the news of Armauer Hansen's scientific discovery in the s, and that of Carville, which accepted patients diagnosed with the disease until , the stigma of leprosy has proven highly resistant to provable statistics or medical innovations that might otherwise dispel misconceptions about the now-curable disease.

    Recognizing this unfortunate fact, activists have for decades campaigned to replace the term "leprosy" with the clinical term "Hansen's disease. Today, the American Leprosy Missions continues the campaign to remove the word "leper" from public discourse by promoting the use of phrases such as "people affected by leprosy," as well as the use of the clinical term, Hansen's disease "Don't Call Me a Leper" n.

    The campaign has been effective in at least two cases, according to the website of American Leprosy Missions, which states:. In , the BBC added an entry to its style guide for journalists and reporters noting: "Avoid using the word 'leper' when describing someone with leprosy. It carries very negative connotations, suggesting an outcast or pariah. Though modest, these successes have begun to recuperate leprosy from a longstanding history of viewing people diagnosed with the disease as deserving of scapegoating and sequestration rather than equal treatment under the law.

    Carville: Remembering Leprosy in America (review)

    The "Don't Call Me a Leper" campaign thus allies the efforts of American Leprosy Missions with those of disability rights activists who have called for such "people-first" language since the s Kafer The campaign also underscores the role that language plays in the social construction of the disease. Scholars of disability often focus on the institutional and environmental barriers that effectively construct disability, but such an approach overlooks that very crucial role that language has in determining what is or isn't a disabling condition.

    The case of leprosy makes it patently clear that language and its use in myth-making and everyday speech can have an almost determinative function in the public's understanding of a disease or disability. Whether it is Euro-American imperialists' misconstruing the Biblical view of leprosy to oppress native populations or public health officials' deploying a mythology of the Middle Ages to justify segregation, the term "leprosy" has historically been used to discriminate against people with the disease and, more recently, to oppress other marginalized groups, who do not have the disease but become "lepers" by nature of a perceived threat to hegemonic groups.

    Carville National Leprosarium - Know Louisiana Cultural Vistas

    Two relatively recent examples show the metaphorical currency that the "medieval" illness of leprosy has had on the collective unconscious of Western society. Saayman and J. Kriel qtd. Peter Allen observes that in the Middle Ages, leprosy was thought of as a sexually transmitted disease, since some medieval people thought that the disease spread through sexual intercourse.

    Allen writes that "most of all, leprosy was tied to the sin of lust" By the s, a time when evangelical conservatism was on the rise in the U. Allen compares the incendiary remarks of Reverend Jerry Falwell to those of a seventeenth-century writer: "Like Francis Herring, the seventeenth-century English author who described plague as 'the stroke of God's wrath for the sins of mankind,' the Reverend Jerry Falwell felt free to proclaim to a national television audience in that 'a God who hates sin has stopped [homosexuality] dead in its tracks by saying, 'do it and die'" The impulse to call AIDS the modern-day leprosy was, therefore, the natural result of repeated moralizing around the disease.

    Virtual International Authority File

    As such, AIDS came to be characterized alongside leprosy as a medieval illness, its lay-diagnosis constituting a reenactment of "a drama that had been written centuries before" Allen xv. More recently, the ostensible threat of leprosy has been used to justify strict immigration policies that would bar Mexican and Central American immigrants, including asylum-seekers, from entering the United States.

    See a Problem?

    In late , when a caravan of Central American migrants was headed to the U. Speaking to a Fox News host, a former ICE agent David Ward said, "We have these individuals coming in from all over the world that have some of the most extreme medical care in the world. And they're coming in with diseases such as smallpox and leprosy and TB [tuberculosis] that are going to infect our people in the United States" Basu and Connor n.

    Just as Western imperialists in the nineteenth century used leprosy as a reason for segregating native populations in their home countries, Ward employed the spread of disease to the U. Public health officials declared smallpox eradicated in after a worldwide vaccination campaign, while tuberculosis is treatable by antibiotics. As for leprosy, Central America has reported only a small number of cases in the years since the World Health Organization declared the disease "eliminated as a public health problem" in Basu and Connor n.

    That Ward both used the much more loaded term "leprosy" rather than Hansen's disease and lumped leprosy in with diseases that have literally been eradicated suggests a purposeful and malicious intent to deploy the term to oppress a marginalized group. By ignoring the factual reality of the disease in favor of its historical and metaphorical connotations, in other words, Ward deploys a diagnostic medievalism that lets him dubiously argue that migrants threaten not only to spark a public health crisis but also to transport us back to the past, when diseases like leprosy and smallpox were a legitimate threat.

    Ultimately, both of these cases illustrate the dangers of leprosy's "medieval" stigma even in the twenty-first century.

    Carville: Remembering Leprosy in America Carville: Remembering Leprosy in America
    Carville: Remembering Leprosy in America Carville: Remembering Leprosy in America
    Carville: Remembering Leprosy in America Carville: Remembering Leprosy in America
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    Carville: Remembering Leprosy in America Carville: Remembering Leprosy in America
    Carville: Remembering Leprosy in America Carville: Remembering Leprosy in America
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