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October 3, 2018
Fashion can be weird, but for a few decades in the middle of the 19th century it went completely nuts. All the cool kids wanted consumption—a disease that liquidises your lungs and drowns you in blood, or else causes your organs to fail. They painted their faces white, rouged their cheeks and penciled on veins to mimic the hectic flush of a constant low-grade temperature. They tightened their corsets until their chests hollowed out and their shoulders stuck out like a skinny bird’s wings. And according to microbiologist-turned-historian Carolyn Day who details the surreal trend in her book Consumptive Chic, even doctors said it made you better looking.
Day says the strange trend was a way of dealing with a death sentence. In the absence of a cure, consumption became something only those with a certain disposition—marked by beauty, sensitivity and genius—could catch. ‘So, if you are predisposed to the illness and you go from the hot crowded ballroom to your cold carriage: consumption. If you have a tragic love affair: consumption. If you read the wrong thing: consumption.’
Among the rich, anyway. Among the poor, it was ‘treated as a different disease’, a sign of vice and hard living. Then came the death of the famous Parisian courtesan, Marie Duplessis, the inspiration behind La Traviata and La Boheme. Once consumption was linked to prostitution and poverty, Day says, its fashion moment was over. The discovery of Mycobacterium tuberculosis, which causes the disease, made it even more unfashionable. And any residual link to beauty or genius was completely broken when—with the help of antibiotics and public health measures—the disease was eradicated among the rich.
But then a strange thing happened. Tuberculosis, or TB, didn’t retain its association with vice and hard living, though it certainly remained among the poor. It seemed to disappear altogether, to become invisible.
In 2010, Warren Entsch, Federal MP for the Queensland seat of Leichhardt, got a call from a constituent. A Papua New Guinean girl had died at Cairns Base Hospital and her family couldn’t afford to repatriate the body. The 12-year-old had been killed by tuberculosis. As a child, Entsch had visited his mother during the year she spent in hospital with TB. But that was the 1960s, Entsch says, ‘I honestly thought … that TB had been eradicated.’ Entsch arranged a fundraiser to pay for the girl’s repatriation as well as her funeral and burial dress. When not long after, another 12-year-old was brought to Cairns Base Hospital with TB, Entsch offered to foster Violet ‘to give her a chance’. But Violet’s father wanted payment for her; ‘I wasn’t going to buy a child’, Entsch says. The girl returned to PNG and a few years ago Entsch lost contact with her. ‘I’m worried she’s dead,’ he says. He heard of other tuberculosis cases, like the mother, daughter and granddaughter who all died within a couple of years of each other on the Torres Strait Island of Saibai.
‘I suddenly realised it was a major issue.’
The severity of the issue was highlighted when the World Health Organisation released its latest Global Tuberculosis Report, which estimates around 1.6 million people died from TB last year. An estimated 1.7 billion—almost a quarter of the world’s population—have latent tuberculosis, which hides out in the body waiting for the right conditions before it attacks. The right conditions are a seriously compromised immune system, similar to what happens when you get HIV; when the AIDS epidemic hit in the 1980s, TB had a field day.
The WHO figures are even more shocking when you consider Mycobacterium tuberculosis is curable. For now. The bacteria have been around almost as long as humanity and seem determined to stick around. The WHO Report estimates 558,000 new cases of tuberculosis diagnosed last year were resistant to at least one of the drugs used to treat it. Most were resistant to multiple drugs. Worse, these resistant strains are spread through coughing just like run-of-the-mill TB. Resistant TB not only takes longer to treat, the tougher drugs needed to defeat it have serious side effects like psychosis and deafness. What doctors call ‘extensively drug resistant’ (XDR) tuberculosis is on the rise and health experts fear it’s only a matter of time before there’s a strain resistant to every treatment we have.
The rates of TB in Australia are still very low, but multi-drug resistant (MDR) tuberculosis is a growing threat. In Queensland alone, 96 patients were diagnosed with MDR tuberculosis TB between 2000 and 2014, according to a study published in the International Journal of Tuberculosis and Lung Disease this year. The bulk of these patients were diagnosed in the later years of the study and most were from Papua New Guinea, where MDR-TB is at emergency levels. Over the same time period, Australian doctors were forced to stop treating at least 13 patients because of the risk they wouldn’t adhere to their treatment—daily injections for six months and around 20 pills a day for up to two years—and the TB would become even more resistant. It is not known what happened to these patients, but it’s likely they have all since died.
Extensively drug resistant TB is ‘almost impossible to treat at the moment, but if it develops further resistance and then becomes transmissible … we’ll be back to our pre-antibiotic days,’ says the study’s lead author, respiratory physician Tim Baird. ‘It’s extremely frustrating when you know you can cure something and (yet) it’s becoming more and more incurable.’
It is partly in response to this threat that the United Nations hosted a high level summit on stopping tuberculosis on September 26. Entsch, who is part of a Global TB Caucus, says Australia should be playing a key role in the fight because of the emergency levels of disease right on our doorstep. Even if it weren’t so close, TB’s airborne transmission means borders are no protection. ‘While it’s a disease of poverty it can be transferred anywhere in the world in 24 hours,’ he says.
Varney Lake, superintendent of the Monrovia Central Prison in Liberia, is pissed off. Our small group of journalists and NGO workers has been body searched and stripped of everything except pens and paper. Now we sit in hastily arranged plastic chairs in a corner of the prison yard, while Lake tells us that officials—he doesn’t say where from—surveyed tuberculosis in his prison last year, and he still hasn’t seen a report. Since then, there have been a number of new cases and one young man has died. Lake’s health officers have tried testing the man’s cellmates but they’re refusing to produce the sputum needed for a microscope test, which identifies tuberculosis. The dead man himself (who Lake insinuates was falsely imprisoned), denied having TB right up until he started coughing blood. He died a week later. Seeing the prison’s sickbay, where four men sleep in a two-bed cell with plastic tacked over the windows and two bowls of plain rice a day, it’s not hard to guess why. Not that the other accommodation is much better. Across a yard of packed earth and listless men, many of whom lost limbs during Liberia’s civil wars, there is a four-storey cellblock. Inmates hang from the barred windows, calling out insults or lowering shopping bags, hoping someone will fill them with water.
‘I’m meant to have 375 inmates, I’ve got 1102,’ Lake says. ‘You do the math.’ He paces in front of us, shin-high black boots covered in dust. He can’t be expected to manage TB as well as an overcrowded prison. The Government can’t even manage. A few months before, two ‘hard core criminals’ escaped the Liberian Government’s special Annex for drug-resistant tuberculosis when the handcuffs keeping them chained to their beds were unlocked. They’re still at large, he says.
‘We’re all at risk.’
Case in point: one of his health workers has just tested positive for TB. The man sits across from us, dusty black suit hanging from bony shoulders. He holds a cane with one hand and rests a book on the opposite thigh. Later, I catch a look at the title: Preparation for the End Time.
I was in Liberia with the NGO RESULTS, which is trying to raise awareness about diseases of poverty like tuberculosis. And here’s what I became aware of: a disease of poverty is one you catch if you live in a mud hut in a village with no electricity, or running water, and four out of five hand pumps are broken. Or it’s a disease you get if you live somewhere like Monrovia Central Prison, or the nearby West Point slum, epicentre of the Ebola outbreak, where narrow dirt alleys are littered with shit because there’s no running water and only a few toilets for an estimated population of 75,000. Here showers are a LRD$15 bucket of water in a corrugated iron ‘cubicle’ that juts over the Atlantic Ocean and its tideline of garbage, on which one of my travelling companions saw a decapitated corpse. I became aware that they’re the diseases you get if taking a day off work to go to the doctor means your family will starve.
But I also became aware that ‘disease of poverty’ means more than an illness caused by living in hard conditions. It means a disease that anyone can get, but only poor people die from. Consider that despite the millions of people with TB, hardly any new treatments have been developed since the 1970s. It’s hard to escape the conclusion that it’s because the poor are not a market.
Joia Mukherjee, Chief Medical Officer of the NGO Partners In Health which works in Liberia, says ‘markets will always fail when it comes to diseases of poverty’. Mukherjee, a Marxist and Harvard Medical School professor, points out the irony in the US Orphan Drug Act—meant to foster drug development for rare diseases with tiny markets—being used to encourage the development of new TB treatments. Or a proposal to give TB drug sponsors a patent extension on another drug in their pipeline. Because, she says, ‘if you extend the patent six months, you can make like a billion dollars on, you know, a male pattern baldness drug.’
Mukherjee tells me that until the late 1990s, drug resistant tuberculosis was not even treated in Africa; treating it was considered ‘too expensive’. Under WHO recommendations, patients in poor settings got generic TB treatment or none at all. It was as if drug resistant tuberculosis, ‘didn’t exist’ in Africa, Mukherjee says. Eventually activists like Mukherjee were able to convince the WHO that multi-drug resistant TB could be treated cost-effectively, but not before hundreds had died and the disease had developed even more resistance.
The memory clearly angers Mukherjee. Her son, she tells me, had childhood cancer. ‘It just never occurred to me to say, you know, “I appreciate that you can do something for him, but I think it’s my responsibility to say (don’t). It’s just too expensive.” But that’s kind of what we expect from Africans … Aboriginal people, Filipinos, Mexicans’. In other words, from poor people.
In 1978, Susan Sontag argued that before it had been eradicated among the rich, tuberculosis was described ‘in images that sum(ed) up the negative behaviour of nineteenth century homo economicus’. Early capitalism ‘assumed the necessity’ of discipline and careful spending; tuberculosis was linked to over-exertion and wastage. (Cancer with its ‘repression of energy (and) refusal to consume or spend’ is the dreaded disease of consumer capitalism). I wonder how Sontag would explain TB’s invisibility now. I wonder what constitutes ‘negative behaviour’ under high capitalism? Maybe if you’re not a consumer, even simple existence is too much to ask?
In his work on the ‘new xenophobia’, Indian author Tabish Khair has argued that those who can’t contribute to the capital economy are expendable; they are, to borrow Michel Foucault’s term, let die. In a 2015 paper, Khair argues that from the 1980s onwards capital was increasingly abstracted from currency, let alone labour, social relations or actual human bodies. Moreover, ‘the nature of high capitalism enables power to be exercised in the abstract,’ he writes. This abstract operation of power allows high capitalism to imagine itself as ‘a revolution against old structures of oppressive power’. The invisibility of human, suffering bodies allows us to keep thinking of ourselves as the good guys. ‘It is when the bodies of the out-group start becoming visible, or start making themselves visible,’ Khair writes, that the ‘new xenophobia’ of high capitalism begins to use its abstract avenues of power ‘to control, erase, consume or exile them’. Khair says the exercise of this abstract power, under which humans become invisible and are left to die—through, say, obliquely worded immigration laws—nonetheless amounts to genocide.
Invisibility of the suffering body is not simply about preservation of our own self-image. In a 2018 essay on the Grenfell Tower fire, the ABC’s online religion and ethics editor Scott Stephens drew on philosopher Hervé Juvin to argue that in the 21st century, humanity had been cleaved in two. On the one hand was the rich body ‘the body beautiful, the fabricated body, the body of our own choosing, with its panoply of carnal obsessions: from cosmetics, cosmetic surgery and perfumes, to hair removal and hairstyling, to body sculpting, body building, body piercing and body art. On the other, there are those bodies that remain caught within the brute logic of nature.’
The maintenance of our demanding Western bodies—the dissatisfaction required for never-ending economic growth—depends on denial of the poor body and its claims upon us. Our demand requires this denial—through abstract language, flashing numbers on screens or, as Stephens argues, the deadly cladding which made the Grenfell fire so deadly. This cladding ‘was a way of hiding the lived reality of its residents from their fabulously affluent neighbours,’ Stephens writes, ‘the point … was to condemn the residents of Grenfell Tower to a state of invisibility’ (his emphasis).
But such immunity to the needs of others, Stephens argues, will—and I paraphrase—come back to bite us on the arse. And so it may be with tuberculosis.
The invisibility that has allowed us to ignore the fate of non-western bodies is the very thing that has allowed the epidemic to grow and the disease to mutate. The disease’s spread may force us to recognise our own interdependence, to recognise that we are not immune to the lives of others. It may force us to acknowledge that the poor do exist, even when they don’t consume or fit into the capital economy. Either that, or there’s a very real possibility that we will be returned to the days before antibiotics when there were no diseases of poverty, and weird fashion was our only consolation.
Annabel Stafford is a freelance journalist and casual academic. She lives in Sydney.