Gresham College Lectures

Tuberculosis: A Cultural History

October 13, 2022 Gresham College
Gresham College Lectures
Tuberculosis: A Cultural History
Show Notes Transcript

Tuberculosis (and especially drug resistant strains) is a major global health problem, with over nine million people developing the disease annually and 1.5 million dying from it. The history of TB reveals the complex and often contradictory meanings assigned to this disease. The terms used to talk about TB – phthisis, consumption, the “white plague”, and the “wasting disease”, for example – reveal a great deal about popular perceptions relating to contagion and individual social responsibility.

A lecture by Professor Joanna Bourke

The transcript and downloadable versions of the lecture are available from the Gresham College website:

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- This is my fourth series, there was the body, you can find them all online, there was the body, there was evil women, there was sex, humph, well now we're getting to something a little bit more gruesome and a little bit more unhappy, and that is disease, and cultural history of disease in particular. The first thing I really want to talk about is, what do we actually think when we think about tuberculosis, what sort of mental image comes up in our heads? If we are thinking about the 19th century, we might imagine an emaciated, white, male artist coughing up blood on a white pillowcase, and as he presses his handkerchief to his fevered brow, his eyes are burning with creative genius. If we fast-forward 50 years, however, we have a very different image of tuberculosis, perhaps an impoverished, white, female mill worker, perhaps, lying on a cheap, metal-framed bed in a bare room, or perhaps in a consumptive ward in a sanatorium. Today, what do we imagine today? Maybe we might visualize an HIV-positive, young, black man or woman eking out a living in South Africa or Haitian shanty towns, after all, since the 1980s, when international health organizations judged TB to be a global epidemic, scientists have been aware of the comorbidity between tuberculosis and HIV, being infected by HIV makes a person vulnerable to TB, having TB can activate HIV. 40 years before the announcement of a global epidemic, it was assumed that TB would eventually be relegated to history, but of course drug-resistant strains has meant that it remains endemic in many societies. 1961, World Health Organization found that 1/5, 1/5 of TB cases in Kenya were drug-resistant, largely due to ineffective health communication, which meant that sufferers often failed to complete the full course of treatment. Today, one in every three people globally are infected. TB is responsible for one in four preventable deaths. I think it's a testament to the skewed priorities of current global capitalism that only one in five TB patients today around the world have access to effective public health programs. Many public health experts, in fact, argue that deaths from TB are one of the most reliable indexes of human wellbeing and societal equality. Something, must, I think, be desperately wrong. So I guess what I'm going to do in today's talk, but also in the whole series, is ask, what can a cultural history of disease, in this case TB, contribute to debates today? Tuberculosis was the most feared disease of the 19th and early 20th centuries. In 1903, the president of the American Public Health Association lamented what he called the, "slow and insidious spread of TB," contending that it had become the scourge of the human race. Called the captain of death, white plague, wasting disease, consumption, it literally consumed the bodies and minds of millions of people. In 19th and early 20th century Britain, the disease killed one in every eight children, men, and women. In fact, it was the greatest single killer of men, the greatest single killer of men, and the second greatest single killer of women, very close to the first, of course, which was heart disease. These statistics, we know, are colossal underestimates, such was the stigma of being labeled a consumptive that sufferers routinely sought to hide or deny their symptoms in front of other people. So it's no wonder, in other words, that there's a cultural obsession with this disease, and we see it in numerous plays, poems, novels, songs, anyone here knows the wonderful song, Victoria Spivey's classic "T.B. Blues," 1927. But the one I want to just mention briefly here is one of my favorite authors, of course, and that is James Joyce. He was, by all accounts, absolutely obsessed with TB. In his 1922 classic "Ulysses," set in Dublin, 1904, he memorably describes the bronchitic headmaster, Garrett Deasy, whose, "coughball of laughter leapt from his throat, "dragging after it a rattling chain of phlegm." The novel also portrays these consumptive girls with little sparrow breasts, and the sunken eyes, and blotches of phthisis, and hectic cheekbones of a lawyer called J.J. O'Molloy. He describes the way O'Molloy would apply his handkerchief to his mouth and scrutinizes the galloping tide of rosepink blood. However, I think, Joyce's most poignant description of TB comes in another essay, actually, he wrote, a short story he wrote, called "The Dead," which was published in the short story collection "The Dubliners," 1914. The entire setting, for those of you who know the story, the entire setting of the story is tubercular, even the doorbell is wheezy, and the festivals are interrupted by high-pitched, bronchitic laughter. Characters exchange news about the benefits of a bracing air, and there is ominous allusions to people suffering from colds. But the climax of "The Dead" revolves around the singing of a traditional Irish ballad about the fragility of love and the untimeliness of death. When a central character, called Gretta Conroy, hears "The Lass of Aughrim" being sung, she becomes upset, confessing to her husband Gabriel that her very delicate lover, a 17 year-old Galway man named Michael Furey, used to sing it to her. Furey had tuberculosis, and was, quote, "In his lodgings in Galway, "and wouldn't be let out because he was in decline." Gretta explains that when Furey heard that she was migrating to Dublin, he escaped his sickbed, made his way to her house, and sang to her under a tree in the rain. Furey's reckless excursion sparked the acute phase of TB, and a week later, he was dead. In the story "The Dead," Gabriel becomes jealous of the lonely churchyard where Michael Furey lay buried. What I find really interesting about this short story written by James Joyce is that it lay bare what, for him, was a very personal story, the story, in other words,

drew directly from Joyce's life:

his lover, Nora, resembles Gretta, she too had been in love with a Galway man, called Michael Bodkin. In 1903, after Michael had been diagnosed with tuberculosis, the real Nora broke off the relationship, telling him she was leaving for Dublin. Ignoring his doctor's advice, Bodkin made his way to Nora's home, and in the pouring rain, sang a farewell song under an apple tree. The chill aggravated his TB and he died. According to Nora's sister, Joyce was forever jealous of the dead Bodkin, feeling a rivalry with a dead man buried in the little Cemetery Rahoon. But "The Dead," the story "The Dead" does more than simply expose Joyce's very painful personal trauma, it also exposes this underlying anxiety about tuberculosis in Ireland at the turn of the century. Joyce was writing in the early years of the 20th century, when Ireland had the fourth highest mortality rate of tuberculosis in the world, exceeded only by Hungary, Austria, and Serbia. Particularly vulnerable were young people. Unlike America and England, where the disease peaked in 1850 and 1870 respectively, in Ireland, it raged well into the 20th century. TB was popularly called, in fact, the Irish disease. So why is tuberculosis so common in Ireland, asked the distinguished physician John Byers in his 1907 lecture at the Tuberculosis Exhibition. As the professor of midwifery and the diseases of women and children at Queen's College, Belfast, Byers systematically reviewed what he regarded as the main theories for why it was such a problem in Ireland. Was Ireland's climate damp climate, boggy land responsible? Could high levels of emigration make a difference, since strong, healthy citizens left, leaving behind a physically inferior population, a race of weaklings who propagate weaklings, all very susceptible to phthisis? Or did the Irish race itself provide what Byers called a fertile soil upon which this could grow? Although Byers agreed that these explanations, these ones here, did have some explanation, had some merits, he maintained that they were, in fact, inadequate. Instead, no surprise here,

he blamed the Irish themselves:

their lack of education about sanitation, nutrition, and housing had left them unable to grapple with the white plague. Byers chastised his fellow Irish men and particularly women for their excessive use of alcohol and increased use of tea and white household bread instead of the old porridge and buttermilk. Children, he argued, were being fed infected meat, in fact he estimates that 30% of cows in Ireland had tuberculosis, he was probably right about that, by the way. Adults, he wrote, possessed unsanitary habits, which, when combined with crowded accomodation, poor ventilation, helped spread TB. Furthermore, unlike the rest of the UK, infected Irish patients had limited access to segregated housing. And Byers urged the government to impose compulsory notification of TB, establish sanatoriums, inspect abattoirs, and promote public education, particularly of our mothers, and our wives, and our sisters, in temperance, cleanliness, and sanitation. As we'll see throughout this whole series of talks on the cultural history of disease, sick people, particularly females and minoritized people, were routinely blamed for their own afflictions. Byers was writing at a particular time, 1907, a particular place, Ireland, however, knowledge of this disease has a very long history, it goes back, in fact, to ancient times. Archeologists have found evidence of the disease in 5800 BCE in Europe and 4500 BCE in the Near East. The forms of disfigurement typical of TB appears in ancient art. One of the earliest descriptions of the disease can be found in the writings of Hippocrates, he was the one who actually called in phthisis, from the Greek word meaning to decay and waste away. It was Aristotle who observed that phthisis was contagious, as did Galen in the 2nd century. Benjamin Rush, to move forward, and he was the one who argued that the contagious properties were not due to the occult, but were carried through the air, so a very important medical distinction here in the late 17th century. Benjamin Rush, the greatest American physician in the early years of the republic, believed that TB was caused by a systemic, underlying debility that weakened the serum, or blood, causing hyper-secretions from the bronchial vessels. According to Rush, a person's underlying weaknesses were the cause of this. So in other words, the disease was, as he put it, ignited by puberty, humoral imbalances, and grief. The actual microorganism was not discovered until 1882, when Robert Koch christened it the bacillus. From that date onwards, scientists throughout the world dedicated their labors to investigating its properties and propensities. They were able to show that between 1/3 and 40% of TB patients expelled copious bacilli whenever they coughed, and that these bacilli could be ejected for up to 10 feet. The bacilli adhered to bedding, food, clothing, furniture, it stuck to hands and the faces of people around the inflicted person. As Koch lamented, bacilli were scattered everywhere with ease.

Its main symptoms:

coughing up blood, fever, weight loss, night sweats, facial pallor. It could be chronic, with patients surviving, in fact, for decades, or it could be galloping, resulting in an agonizing death. But the disease named tuberculosis was not just the bacillus. It has become a truism to suggest that TB is a social disease. Of course, this is not, obviously, to deny that respiratory TB is an infectious bacterial disease caused by Mycobacterium tuberculosis, Mtb, but culture gives meaning to nature. Many people are affected by Mtb, but it remains latent until the person's immune system is compromised, by stress, poor diet, inadequate accommodation, poverty, malnutrition, and in recent years, HIV. In other words, Mtb is a necessary but not sufficient cause of the illness. Furthermore, what happens within our bodies can only be understood through the prism of the world around us. The language used to refer to any diseases affects people's responses to it. As the name suggests, phthisis, wasting disease, decline, consumption, the white plague, the captain of death, or tuberculosis, for example, as those names change, so do the meanings attached to being ill. Culture, not nature, determines how people feel and act. For example, in the shift from being labeled a consumptive to becoming tubercular, patients shifted their emphasis from the disease's effects on their bodies, consuming it, to an invasion, the invasion of a bacterium, requiring a war to destroy it. Rather than being seen as these passive victims embracing their fate, they were supposed to physically, as well as metaphorically fight, all guns blazing. As the contagious nature of the disease became more well known, emphasis also shifted from an individual's constitution to questions of civic responsibility and regulation. An individual's constitution, and therefore his or her need for isolation, increasingly took second place to conducting a societal war against tuberculosis, as American Professor of Preventive Medicine Mazyck Ravenel argues in a 1903 article in the "Proceedings of the American Philosophical Society." By being a tragedy causing needless death, a huge array of professionals, physicians, sanatorium managers, statisticians, had to be recruited to count and to manage these populations of sick people. When, how, and why did these shifts in meaning take place? I think one of the most important changes occurred, and there's actually three of them I'm going to be discussing, but I think one of the most important changes occurred between the 18th and the 19th centuries. In the earlier period, the wasting disease was quite often romanticized, the white, emaciated, male genius image which I conjured up at the very beginning of this talk. This was what Susan Sontag was referring to in her famous essay "Illness as Metaphor." What she does in this book, she does many things, if you haven't read it, do, what she does though is she contends that TB was the obverse of cancer. In her words, "As TB was the disease of the sick self, "cancer is the disease of the other." Like gout in the 18th century, which came freighted, similarly, with these images of aristocratic indulgence, TB was a romantic, aestheticized disease of creative minds. It gave middle and upper class sufferers an enhanced sense of self. As historians of medicine Clark Lawlor and Akihito Suzuki explained in a fantastic article, I recommend it, if you get the paper version of this talk, I've got the footnotes there so you can find it, in an article called

"The Disease of the Self:

"Representing Consumption, 1700-1830," they argue that as the 18th century progresses, consumption became a marker of individual sensibility, genius, and personal distinction. They continue, "Its heightened representation in literature and art "reflects, and to some extent reinforces, "its perceived cultural value to the self. "This perception was strengthened "by the age-old belief, "both popular and professional, "that consumption could be caused "by mental upset of various kinds, especially," and this is the important bit, "that caused by a precocious intellect, academic overwork, oh, that's me, (audience laughs) "academic overwork, "or merely a hypersensitive poetic or creative sensibility." There's a gender aspect here which I find really interesting. In literature, we're talking literature here, we're not talking about reality on the street, female consumptives were portrayed as being transformed by TB into supremely aesthetic, passive, spiritual creatures. For example, in Samuel Richardson's 1748 novel "Clarissa," the leading character's physical frailty, her slenderness, and love melancholia, which was caused by the disease, gave her this ethereal, if you like, beauty. In contrast, the disease was thought to actively stimulate the creative, not the passive, the creative, energetic passions and powers of male consumptives. This view drew on Brunonianism, it's a term that comes from, I've got it, yep, there we go, comes from the famous Scottish physician John Brown. His view was that the body itself contains a fixed amount of what he calls excitability that needed to be kept in balance. So according to this view, tuberculosis overstimulated the body and brain, engendering forms of genius that could not be sustained. And commentators of this tradition drew on a huge range of artists, philosophers, et cetera, Kant, Chopin, Keats, Goethe, Emerson, Stevenson, Chekhov, it goes on and on, painters as well, and again, if you look at the printed copy, you can get more discussion about all these things, Beardsley, and all those sorts of people. This fantasy of the consumptive as a person of exquisite taste and sensibility was so powerful that sufferers themselves would attempt to live and die according to that image. In the 1920s, the link between TB and enhanced artistic sensibilities was so entrenched, and this is a quote, by the way, I think everyone uses it, so I don't know why I am. Everyone who writes about TB quotes Lord Byron, who quipped that, "I look pale, I should like to die of a consumption, "because the ladies would all say, "look at that poor Byron, "how interesting he looks in dying." I don't think he looks like he's dying here, anyway. The sensitive, delicate, and slender bodies of male consumptives testified to their social and creative distinction, their deaths were dramatizations of their ability to transcend the hustle and bustle of vulgar, modern, industrial life. These sufferers, both male and female, were framed as invalids rather than patients, they were deserving of the support of their families and friends, as well as the veneration of their communities. This romanticized image of the consumptive did not last. Industrialization, urbanization, with their accompanying fears linked to the dangers of miasma, that is the belief that disease was caused by bad air, miasma. According to this view, minute animalcula, the old term used for microscopic organisms, and then germs, shifted anxieties about disease transmission towards blaming impoverished others. The moral responsibility for this disease was assigned to the working classes, with their allegedly dirty, disgusting habits. In particular, poor women were seen as vectors of disease, and of course, rich women were meant to be their educators, teaching them how to do it properly, cleanly. Women's bodies began to be discussed as the soil that harbored disease. Women gave birth to infants already containing the seed of tuberculosis, their inept cooking of cheap cuts of meat, their purchase of cheap, infected milk imperiled their families, their unsanitary housekeeping spread risk to middle class homes, their promiscuity infected middle and upper class family men who consorted with them in homes of vice. This was not only a gendered discourse, no surprise here as well, it was highly raced. As we've already seen in the 18th century, consumption was racialized as the disease of white, creative types, but 19th century commentators increasingly linked the disease to minoritized ethnic groups. Medical and other experts in Los Angeles, for example, blamed Mexicans for spreading the disease, leading to calls for tighter border controls, rigorous medical checks, deporting, repatriating as many as possible. And similar movements can be seen wherever we want to look

in this period:

colonial white Australia fueled a nativist rhetoric based on this pure Australian, post-war Britain, Asian immigrants targeted. The result was inadequate, highly damaging policies founded on racialized and racist agendas. A useful case study of this, I think, can be found by looking at responses to indigenous peoples in the US. These populations had extremely high levels of infection. According to some estimates, over half of Navajo had TB and extremely low life expectancy. This caused, for example, in 1940, the editors of "The American Journal Public Health" to call TB an Indian massacre due to neglect to the extent which is truly a disgrace to the nation. So how did physicians at the time explain this? Well, they basically used three main theories: culture, virgin soil, racial weakness, and all three were linked to what they called blood quantum, that is the degree of Indian blood, in the sense that full-bloods were more vulnerable than half-bloods, a completely spurious concept. Although epidemiological research from the 1930s had established that there was a link between poverty and TB, the idea that indigenous peoples were particularly susceptible to the disease due to cultural practices, for example the Sioux people were chastised for pipe smoking and religious dances, and that their bodies were somehow more primitive, and these views have a very, very long life. The Reverend D.A. Sanford promoted a particularly racist indictment of Indian idleness and vice in an article called "What Is Killing Our Indians," 1901, published in the ironically named "The Indian Friend." What he does in this is actually say that, explicitly, it is Indian habits that are blameworthy. The virgin soil theory is the second-most influential explanation for the susceptibility of indigenous people to TB. According to this theory, Indigenous Americans were vulnerable because, until recent times, they had limited exposure to the disease, so their immune systems were vulnerable. But as historian Christian McMillan points out, this virgin soil theory assumes this racialized body, primitive people had to wait for their biology to catch up with civilization, and some caught up more quickly. Unfortunately, many modern historians echo these virgin soil arguments, this is a point being made by a really fantastic, I think, critical historian called David S. Jones, who argues that, in fact, there's little evidence that immune deficiencies were the cause of mass deaths, after all, TB was present in precolonial populations, and by the 19th century, when this theory becomes huge, the communities had long established contact with Europeans. There was, in other words, no virgin soil. So why have virgin soil explanations been so pervasive, even to the present? Jones suggests that their popularity

is due to three things:

first, the elegance of immunological determinism, second, reactions against economic determinism of Marxist traditions, and third, the ideological and psychological satisfactions of deflecting attention from the impact of colonialism to an innate, morally neutral biologism. So given such high levels of racism, classism, general misanthropy, it is hardly surprising that the stigma associated with being exposed as a consumptive was formidable, and not only for the person suffering the disease, but their entire family, and their entire community. It was believed to be a disease of poverty and filth. In the words of Dr. Woodcock of the National Association for the Prevention of Tuberculosis, 1912, "Tuberculosis is, in truth, "a coarse, common disease "bred in foul breath, in dirt, in squalor. "The beautiful and the rich "receive it from the unbeautiful poor." And I give lots more examples of this in the paper version if you want to have a look at it. Medical understandings of the transmission of the tubercle failed to dent the pervasive, widespread assumption that the disease was hereditary. This was why the stigma of the disease attached to the whole family. The high levels of fear and the high levels of stigma made the disease ripe for unlicensed, and often unscrupulous drug peddlers and health entrepreneurs, and my favorite one is, one entrepreneur in the 1970s claimed that he was selling the same ointment that Mary Magdalene anointed the feet of Christ. No wonder he was selling it for 60 pounds for a treatment. 60 pounds by the way, is 30 days' wages for a skilled laborer. But unregistered medical entrepreneurs were increasingly joining up with others to share costs and advertise their cheap patent medicines. We can criticize these peddlers of medicines, but they did provide tuberculosis patients with hope, they were selling comforting rituals and routine, and given that, until the 1920s, orthodox medicine had little to offer sufferers, bogus treatments which provided hope might be as good as much else that was on offer. Indeed, practically all treatments were palliative up until that period. And here, men, for example, were encouraged to take to the seas or to emigrate to warmer climates, and there's all these books, titles such as "Winter Homes for Invalids,"

"New Mexico:

Its Climatic Advantages for Consumptives," "California for Fruit Growers and Consumptives," and my favorite, the wonderfully alliterative "The Canaries for Consumptives." And it wasn't until 1908 that effective medical responses to TB became possible, this was when immunologists Albert Calmette and Camille Guerin, both based at the Pasteur Institute in Paris, used a diluted strain of bovine TB to create the vaccine, BCG. But the vaccine, it takes off in some places and it's very effective in some places, and we can talk about that if you like later, but in Britain particularly, there was a resistance to using it, partly because there was such huge investment in sanatoriums for consumptives, sanatoriums which would provide fresh air, clean environments aimed to build up bodily strength, and most importantly to isolate infected people from the rest of the population. Some of them enforced rest and forbade risky activities, which, I am told by a manager of one of these things, that risky activities are reading and sex, (audience laughs) while others, especially in Britain, with its revered work ethic, promoted heavy work therapy. But these sanatoriums were not going to be an effective solution when faced with the epidemic of TB. They were not realistic options, for example, for female sufferers, responsible for families, responsible for children, they were often harsh places where people had to follow extremely strict regimes. In the 1920s, 3/4 of patients died within 5 years of being institutionalized. Indeed, the death rate of people discharged from sanatoria was no lower than those treated in the community. In other words, the money spent on building and maintaining the sanatoriums might have been better spent in improving living conditions of the laboring poor. The fact that they provided accommodation for only 2%, 2% of active sufferers in Britain also suggests that they were not a main factor behind the decline of the disease. More commonly, sick people simply isolated themselves at home, sleeping on porches, in tents in their back garden, or in designated sickrooms. Surgery was also increasingly becoming an option, so heroic surgery became really, really popular, peaking in the 1930s. In the first three decades of the 20th century, surgeons and other medical professionals, who believed that TB was transmissible from mother to fetus, a belief, by the way, that persisted well into the 20th century, resorted to compulsory sterilization of women who were invalids, while almost no one suggested sterilizing male invalids, even though it's a much safer and simpler operation. Medical reservations about the normality of pregnancy meant that they were increasingly happy to sterilize women, and so you get all these really strong arguments about the eugenic importance of sterilizing women who had tuberculosis. Sterilization, obviously, was a preventative measure. Two other preventative measures dominated discussions in this period. The first was stamping out the source of TB in infected food, and the second was hygiene education. By the 1980s, there was clear scientific evidence that two of the main vectors of the disease were diseased milk and meat. From the 1860s onwards, there had been a dramatic increase in the consumption of meat in Britain and the US. Meat consumption in Britain, for example, almost doubled between the 1860s and the 1890s, and it increased further by 1914. Rising real incomes coinciding with falling prices of foodstuffs, due in part to increased agricultural productivity and dramatic reductions in the cost of transporting products from farms to town, meant that consumers, and working class consumers for the first time, were able to consume large quantities of meat. And meat-eating, of course, was promoted by health reformers, who forecast remarkable transformations in the productivity of working class men and women if meat was to become a significant part of their diet. The problem, you've already guessed it, is that much of the meat working class people could afford to purchase was infected. The risks of such things had been, as I say, really well known. Indeed, by the 1890s, bovine tuberculosis had become the paradigm zoonosis according to historian Keir Waddington. Tubercular milk also, very quickly, fell into this category of great concern. The meat and milk trades were forced to respond, and they agreed to the inspection of slaughterhouses and the pasteurization of milk, with some benefits. The second major response was hygiene education. Local and national authorities instigated major campaigns in cleanliness and sanitation. For example, these are in the US during the so-called Progressive Era, that is 1890s to 1920s, officials tackled such things as promiscuous spitting, believing that the main cause of the spread of the disease was spitting. Commonplace human activities, such as kissing, became bacteriological dangers. Not only did kissing spread germs, but it lured people into morally and medically unsafe environments where more than that the TB bacterium could be spread. These places were morally dangerous, dispersing syphilis and alcoholism as easily as tuberculosis. These campaigns and medical interventions have been controversial. This is not surprising, since they were never only about disease. Major concerns included the policing of working class and immigrant communities, and in the printed paper, I give a lot of examples of this, so it's about policing working class and immigrant communities, as well as fostering middle class behavior. There's also a disagreement by historians about the efficacy of the campaigns. After all, by the time they were instigated, TB was already on a steep decline. Medicine alone was insufficient, after all, by the time effective treatment of streptomycin was available, TB already accounted for less than 5% of all deaths, so you got this massive decrease already by the time there was effective treatment. None of the campaigns, vaccination programs, and treatments sought to address the underlying causes of disease, which were rooted in social and economic inequalities. Finally, I just want to very briefly, in one minute, return to the question asked at the beginning of this talk: what can a cultural history of TB contribute to debates today? I think exploring the past can remind us that culture gives meaning to nature. The meanings given to TB shaped the way sufferers experienced the disease and responded to it in their lives. A painful world is still a world of meaning. The sufferings of creative geniuses were no less distressing because they could frame their dying in romantic ways. The stigma attached to being consumed by the tubercular bacilli was immeasurably worse for minoritized and marginalized people, but they too sought ways of coping, drawn from their specific times and places, their contexts. For both, the self-fashioning process was culture-bound, both located within their corporeal body and enclosed by everything without, including environment, language, and relationships. History, I think, also helps by reminding us that controlling or eradicating disease is not simply a medical issue, it's about, we all know this, we've just gone through a pandemic, we're still in a pandemic, it's about politics, ideology, economics, or in the case of TB, colonialist economic exploitation, population dislocation, gross levels of inequality. Solutions to suffering, in other words, must be made at macro levels, that is, attempts to reduce huge wealth disparities. But this requires a shift from disease to health. Are we prepared to make the financial, political, and cultural investments that would be required in the case of tuberculosis today? Thank you. (audience applauds) - There's a question here from our people out there in outer space, as far as I know, which I don't know anything about,

and I hope you can answer:

"Could you comment, please, "on the TB work of Thomas Beddoes and Humphrey Davy?" - Yep Thomas Beddoes and Humphry Davy, their work is incredibly important because what they were trying to do is refocus attention on precisely the social and economic vectors that I think are so important when we look at the spread of TB and attitudes towards it. What's really important in what they do is attempting to take away that stigma, or attempting to take away that blameworthiness that is so common in all of this early literature that I'm talking about, and by taking away that stigma, actually improving communication between the public health officials and patients. Because one of the most difficult things in the contemporary period with tuberculosis is that people stop taking the drugs before it has had time to actually be longterm effective. And in the past, and indeed often today still, but certainly in the past, this was often framed in terms of people just not obeying, people just not following the rules, people just being too lazy, being too tired, not being educated enough, all those sorts of explanations, to, so a shift from that, to, this shift, well actually, what's it about? It's about poor communication by public health officials, as opposed to blaming people who are suffering these diseases, so that's why I think it's really important. - We have major problems with governments, particularly current governments, believing in public health, to some extent, and the sort of creation of an enemy, which is associated with some of the cultural traditions that you've described, we can sort of see happening now with badgers being wiped out, suddenly, they've become a target for a whole community, farmers think it's all coming from the badgers, doctors not necessarily confirming that, certainly vets don't. So has that been a repeated pattern in the cultural history of TB? - Yeah, it has very much. There is something reassuring for commentators, the commentators I'm dealing with here, of course, are all middle and upper class commentators, identifying an enemy that then they can intervene into and do something about, that is a very reassuring, it's a very human thing, but it's also a very reassuring way to respond. So by blaming something else, or someone else, or a group, I should say, what you're doing is you're saying, actually, it won't happen to me, it's them out there who are the problem, we need to either get rid of them, so you have these huge, particularly in the States, repatriation campaigns, getting rid of immigrants, repatriating them, requiring them to undergo really rigorous medical checks, and all that, rather than saying, well actually, the problem is the way our society is organized and the way we are organizing our society as wealthy, middle class people. So this is something that we have a long history of. And as you say, we've seen it quite a lot in the recent questions and debates about the pandemic. - [Questioner] Do you think the cultural response to tuberculosis was dramatically different from the cultural response to COVID? Do you think we've made any progress in how we respond to disease? - I think if we're looking at any disease, it's important to focus on the specificities of a particular time period and a particular geographical location, so when you're talking about COVID, something very different is happening when you're talking about Britain compared to when you're talking about China, or when you're talking about continental India, for example. So my first warning there is, drawing direct parallels, we ought to be really careful about, because if we want to know what's really happening, it's those specificities that can tell us what we're doing right and what we're doing wrong. That said, I do think that we can use history to reflect on what they did that maybe wasn't as effective, or more effective, we have the benefit of hindsight when we're looking at history, so we can look at history in terms of understanding different contexts, we can also look at history in terms of helping us explain why certain fundamental assumptions, sometimes prejudices, have survived, i.e. they have a long history, so it's not surprising that we see this happening. And finally, we can get inspiration from what people did in the past to help needy sufferers, we can get inspiration for how patients themselves, indeed, understood their disease, worked within their communities, and this is why, I published a book a few years ago

called "Pain:

From Prayer to Painkillers," and one of the chief arguments there is, actually, some sufferers in the past responded in very community-positive ways to their suffering, and we ought to be looking at how they did that, and thinking about that in terms of our own practices. - [Questioner] Can I just ask you about something that you referred to in the beginning of the talk about the ratio of infected people to non-infected people pre-vaccination time? Regarding the completely rampant contagiousness of the disease, how is it, in your opinion, that people didn't catch the disease even though they were predisposed to catching it by being in a community which had everything against them? Was it that they didn't perhaps have symptoms but did have the disease, or did they have a natural resistance? What's your opinion on that, please? - That's a really good question. You can be infected and not have any symptoms, and it's not affecting your life at all. And in fact, we know that a large number of people fit into that category, and this is either because of specific immune issues with the individuals, but it's also because of these triggering factors. So the disease can be latent within the body, and it is, and it can be triggered by various, stress, for example, those sorts of issues. There's a number of really interesting scientists who actually say, actually, everyone was infected, it's just that not everyone presented with symptoms of this, and then died of it. And of course, you can live with it, even with symptoms, you can live with it for decades. Most people didn't, there's galloping forms of it, but there are these huge varieties in the way that the body responds to it, which are cultural, social, economic sponsors. - [Questioner] Thank you. There was one thing you mentioned,

and I wanted to further understand it:

you made a comparison with cancer and TB, can you explain that a little more please? - Susan Sontag, it's a great essay, it's a classic in the field, everyone who works in the field has read it and studied it. Her argument, and I do have a slight disagreement with her argument, her argument, though, is that in the 18th and early 19th century, cancer was believed to the disease of the other. So in other words, cancer was the disease of other people out there, poor people, et cetera, et cetera, racialized peoples, and even when a middle or upper class person got cancer, it was seen as something alien to them that had come in from the outside, so it was an other. What she sees in TB in the early period is that it was something that, actually, rather than being externalized by sufferers, was internalized as something that told them something about themselves, so it was a disease of self, which they could, and people who looked after them, and their communities, could see as something that actually was a positive thing about their, for example, exquisite sensibilities, their creative genius, the disharmony within the body caused by an excess of genius, an excess of creativity, so that's the distinction that she makes. I think where she and I part ways slightly is questions about when that ends, and that's, I think, where we part, so it's basically an historian thing, I think it ended much earlier than she does. - So, ladies and gentlemen, thank you very much for coming, and may we thank, once again, Professor Joanna Bourke. (audience applauds)