{"id":7202,"date":"2019-02-05T05:58:31","date_gmt":"2019-02-05T09:58:31","guid":{"rendered":"http:\/\/plataformalac.org\/?p=7202"},"modified":"2019-02-05T05:58:37","modified_gmt":"2019-02-05T09:58:37","slug":"an-invisible-disease","status":"publish","type":"post","link":"https:\/\/plataformalac.org\/en\/2019\/02\/an-invisible-disease\/","title":{"rendered":"An Invisible Disease"},"content":{"rendered":"\n

Source: meanjin.com.au<\/a><\/p>\n\n\n\n

Annabel Stafford<\/p>\n\n\n\n

October 3, 2018<\/p>\n\n\n\n

Fashion can be weird, but for a few decades in the middle of the 19th<\/sup> century it went completely nuts. All the cool kids wanted consumption\u2014a 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\u2019s wings. And according to microbiologist-turned-historian Carolyn Day who details the surreal trend in her book Consumptive Chic<\/a><\/em>, even doctors said it made you better looking.<\/p>\n\n\n\n

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\u2014marked by beauty, sensitivity and genius\u2014could catch. \u2018So, 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.\u2019<\/p>\n\n\n\n

Among the rich, anyway. Among the poor, it was \u2018treated as a different disease\u2019, a sign of vice and hard living. Then came the death of the famous Parisian courtesan, Marie Duplessis, the inspiration behind La Traviata<\/em> and La Boheme<\/em>. Once consumption was linked to prostitution and poverty, Day says, its fashion moment was over. The discovery of Mycobacterium tuberculosis<\/em>, which causes the disease, made it even more unfashionable. And any residual link to beauty or genius was completely broken when\u2014with the help of antibiotics and public health measures\u2014the disease was eradicated among the rich.<\/p>\n\n\n\n

But then a strange thing happened. Tuberculosis, or TB, didn\u2019t retain its association with vice and hard living, though it certainly remained among the poor. It seemed to disappear altogether, to become invisible.<\/p>\n\n\n\n

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\u2019t 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, \u2018I honestly thought \u2026 that TB had been eradicated.\u2019 Entsch arranged a fundraiser to pay for the girl\u2019s 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 \u2018to give her a chance\u2019. But Violet\u2019s father wanted payment for her; \u2018I wasn\u2019t going to buy a child\u2019, Entsch says. The girl returned to PNG and a few years ago Entsch lost contact with her. \u2018I\u2019m worried she\u2019s dead,\u2019 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.<\/p>\n\n\n\n

\u2018I suddenly realised it was a major issue.\u2019<\/p>\n\n\n\n

The severity of the issue was highlighted when the World Health Organisation released its latest Global Tuberculosis Report<\/a>, which estimates around 1.6 million people died from TB last year. An estimated 1.7 billion\u2014almost a quarter of the world\u2019s population\u2014have 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.<\/p>\n\n\n\n

The WHO figures are even more shocking when you consider Mycobacterium tuberculosis<\/em> 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 \u2018extensively drug resistant\u2019 (XDR) tuberculosis is on the rise and health experts fear it\u2019s only a matter of time before there\u2019s a strain resistant to every treatment we have.<\/p>\n\n\n\n

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<\/a> published in the International Journal of Tuberculosis and Lung Disease <\/em>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\u2019t adhere to their treatment\u2014daily injections for six months and around 20 pills a day for up to two years\u2014and the TB would become even more resistant. It is not known what happened to these patients, but it\u2019s likely they have all since died.<\/p>\n\n\n\n

Extensively drug resistant TB is \u2018almost impossible to treat at the moment, but if it develops further resistance and then becomes transmissible \u2026 we\u2019ll be back to our pre-antibiotic days,\u2019 says the study\u2019s lead author, respiratory physician Tim Baird. \u2018It\u2019s extremely frustrating when you know you can cure something and (yet) it\u2019s becoming more and more incurable.\u2019<\/p>\n\n\n\n

It is partly in response to this threat that the United Nations hosted a high level summit<\/a> on stopping tuberculosis on September 26. Entsch, who is part of a Global TB Caucus<\/a>, 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\u2019t so close, TB\u2019s airborne transmission means borders are no protection. \u2018While it\u2019s a disease of poverty it can be transferred anywhere in the world in 24 hours,\u2019 he says.<\/p>\n\n\n\n

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\u2014he doesn\u2019t say where from\u2014surveyed tuberculosis in his prison last year, and he still hasn\u2019t seen a report. Since then, there have been a number of new cases and one young man has died. Lake\u2019s health officers have tried testing the man\u2019s cellmates but they\u2019re 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\u2019s 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\u2019s 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\u2019s 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.<\/p>\n\n\n\n

\u2018I\u2019m meant to have 375 inmates, I\u2019ve got 1102,\u2019 Lake says. \u2018You do the math.\u2019 He paces in front of us, shin-high black boots covered in dust. He can\u2019t be expected to manage TB as well as an overcrowded prison. The Government can\u2019t even manage. A few months before, two \u2018hard core criminals\u2019 escaped the Liberian Government\u2019s special Annex for drug-resistant tuberculosis when the handcuffs keeping them chained to their beds were unlocked. They\u2019re still at large, he says.<\/p>\n\n\n\n

\u2018We\u2019re all at risk.\u2019<\/p>\n\n\n\n

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.<\/em><\/p>\n\n\n\n

I was in Liberia with the NGO RESULTS<\/a>, which is trying to raise awareness about diseases of poverty like tuberculosis. And here\u2019s 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\u2019s 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\u2019s 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 \u2018cubicle\u2019 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\u2019re the diseases you get if taking a day off work to go to the doctor means your family will starve.<\/p>\n\n\n\n

But I also became aware that \u2018disease of poverty\u2019 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\u2019s hard to escape the conclusion that it\u2019s because the poor are not a market.<\/p>\n\n\n\n

Joia Mukherjee, Chief Medical Officer of the NGO Partners In Health which works in Liberia, says \u2018markets will always fail when it comes to diseases of poverty\u2019. Mukherjee, a Marxist and Harvard Medical School professor, points out the irony in the US Orphan Drug Act\u2014meant to foster drug development for rare diseases with tiny markets\u2014being 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, \u2018if you extend the patent six months, you can make like a billion dollars on, you know, a male pattern baldness drug.\u2019<\/p>\n\n\n\n

Mukherjee tells me that until the late 1990s, drug resistant tuberculosis was not even treated in Africa; treating it was considered \u2018too expensive\u2019. Under WHO recommendations, patients in poor settings got generic TB treatment or none at all. It was as if drug resistant tuberculosis, \u2018didn\u2019t exist\u2019 in Africa, Mukherjee says. Eventually activists like Mukherjee were able to convince the WHO that multi-drug resistant TB could<\/em> be treated cost-effectively, but not before hundreds had died and the disease had developed even more resistance.<\/p>\n\n\n\n

The memory clearly angers Mukherjee. Her son, she tells me, had childhood cancer. \u2018It just never occurred to me to say, you know, \u201cI appreciate that you can do something for him, but I think it\u2019s my responsibility to say (don\u2019t). It\u2019s just too expensive.\u201d But that\u2019s kind of what we expect from Africans \u2026 Aboriginal people, Filipinos, Mexicans\u2019. In other words, from poor people.<\/p>\n\n\n\n

In 1978, Susan Sontag<\/a> argued that before it had been eradicated among the rich, tuberculosis was described \u2018in images that sum(ed) up the negative behaviour of nineteenth century homo economicus<\/em>\u2019. Early capitalism \u2018assumed the necessity\u2019 of discipline and careful spending; tuberculosis was linked to over-exertion and wastage. (Cancer with its \u2018repression of energy (and) refusal to consume or spend\u2019 is the dreaded disease of consumer capitalism). I wonder how Sontag would explain TB\u2019s invisibility now. I wonder what constitutes \u2018negative behaviour\u2019 under high capitalism? Maybe if you\u2019re not a consumer, even simple existence is too much to ask?<\/p>\n\n\n\n

In his work on the \u2018new xenophobia\u2019, Indian author Tabish Khair<\/a> has argued that those who can\u2019t contribute to the capital economy are expendable; they are, to borrow Michel Foucault\u2019s term, let die. In a 2015 paper<\/a>, Khair argues that from the 1980s onwards capital was increasingly abstracted from currency, let alone labour, social relations or actual human bodies. Moreover, \u2018the nature of high capitalism enables power to be exercised in the abstract,\u2019 he writes. This abstract operation of power allows high capitalism to imagine itself as \u2018a revolution against old structures of oppressive power\u2019. The invisibility of human, suffering bodies allows us to keep thinking of ourselves as the good guys. \u2018It is when the bodies of the out-group start becoming visible, or start making themselves visible,\u2019 Khair writes, that the \u2018new xenophobia\u2019 of high capitalism begins to use its abstract avenues of power \u2018to control, erase, consume or exile them\u2019. Khair says the exercise of this abstract power, under which humans become invisible and are left to die\u2014through, say, obliquely worded immigration laws\u2014nonetheless amounts to genocide.<\/p>\n\n\n\n

Invisibility of the suffering body is not simply about preservation of our own self-image. In a 2018 essay<\/a> on the Grenfell Tower fire, the ABC\u2019s online religion and ethics editor Scott Stephens drew on philosopher Herv\u00e9 Juvin to argue that in the 21st<\/sup> century, humanity had been cleaved in two. On the one hand was the rich body \u2018the 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.\u2019<\/p>\n\n\n\n

The maintenance of our demanding Western bodies\u2014the dissatisfaction required for never-ending economic growth\u2014depends<\/em> on denial of the poor body and its claims upon us. Our demand requires this denial\u2014through abstract language, flashing numbers on screens or, as Stephens argues, the deadly cladding which made the Grenfell fire so deadly. This cladding \u2018was a way of hiding the lived reality of its residents from their fabulously affluent neighbours,\u2019 Stephens writes, \u2018the point \u2026 was to condemn the residents of Grenfell Tower to a state of invisibility<\/em>\u2019 (his emphasis).<\/p>\n\n\n\n

But such immunity to the needs of others, Stephens argues, will\u2014and I paraphrase\u2014come back to bite us on the arse. And so it may be with tuberculosis.<\/p>\n\n\n\n

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\u2019s 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\u2019t consume or fit into the capital economy. Either that, or there\u2019s 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.<\/p>\n\n\n\n

Annabel Stafford is a freelance journalist and casual academic. She lives in Sydney.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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