Beth Vale (Researcher)
Editorial Note: Beth Vale is an independent researcher, writer and consultant whose work spans health anthropology, creative non-fiction and body politics. Her article reflects on one panel during a four-day workshop in transdisciplinary research into health and illness. These kinds of critical transdisciplinary initiatives are small but growing in strength and visibility in South Africa. Besides Beth’s work with the Johannesburg Institute for Advanced Study (JIAS), key initiatives, conferences and networks are: Medical and Health Humanities South Africa (MHHA); Stellenbosch University - MPhil (Transdisciplinary Health and Development Studies); AIDS and Society Research Unit (ASRU, UCT); Wits Institute for Social and Economic Research (WISER); Malawi Medical Humanities Network; BMJ Journals - Medical Humanities and Health Humanities Mini Conference (Stellenbosch University).
‘My country is full of holes and so is my body.
Mines and mass graves, torture and exile […]
My body is a site of multiple digs.
Some nights I hear sounds. A rasping that hovers like an echo in my body.
A sound I can only understand as communion between my body, the dying earth, and the dead bodies it
Stacy Hardy, a writer, poet, journalist and artist, is reading excerpts from a piece of collaborative theatre: Museum of Lungs. The production is a performed collage, combining music and archival history, with intimate recollections of Hardy’s own experience living with undiagnosed TB. ‘I developed a relationship with this thing I could feel but I couldn’t name’, she says.
For years, Hardy lived with what she called ‘‘a thing’, ‘a creature’, until one day, it was given a name and an image. She goes on reading: ‘On the x-ray the disease shows up as emptiness. A hole. A gap where one ought not to exist. A cavity. The nothing-space between breaths, between breasts.’
Hardy is giving this reading in March 2019 at a transdisciplinary workshop on South African health and illness. The workshop, titled State of Dis-ease, has been coordinated by the Johannesburg Institute for Advanced Study (JIAS) and is intended to draw artists, activists, researchers and practitioners into conversation about the country’s pressing health questions. It is both an experiment in, and an appeal for, new ways of writing, doing and imagining healthcare that transcend disciplinary silos. This panel, titled Breathless: The State of the South African Lung, is one of many that over the course of the workshop, would set that experiment in motion.
Not long after Hardy’s description of her own X-ray, the audience is presented with that very image: a pair of lungs, illuminated in hazy white against a black backdrop. Bavesh Kana, Director of the Centre for Excellence in Biomedical TB Research, and the panel’s second speaker, hovers a red laser over the black dots on the lungs. ‘I’m glad Stacy talked about the holes’, Kana says. And he’s right. Those holes are now alive with meaning. Hardy’s inner dialogue pours out of them:
‘How then do I make sense of my diagnosis? More than anything I want to journey down one of the holes the disease has eaten in my body. I do understand how this eating works medically. If the disease eats me is it because it is hungry? Do diseases know what they are eating? Does my disease prefer kidneys to lungs? Are my insides yummy? Is the hole literal? A gap or gape in my organs or does the doctor mean it metaphorically. Is it a hole like a black hole or more like a mine shaft? I want to cut a hole in my skin and crawl inside myself to excavate’.
Suddenly, Hardy’s singular experience is exploded onto millions of bodies, as Professor Kana proceeds to map the scale of the TB epidemic, the audience imagines each of these TB patients wrestling their own holes, both literal and metaphorical. ‘And these holes’, Kana says, ‘are what eventually make people breathless.’ Breathless: the title of the panel.
With his expertise in mycobacteriology, Professor Kana brings the bacteria to life. The audience watches footage of TB bacteria multiplying in a petri dish: glowing, green worms shivering and replicating. Again, Hardy’s reflections reverberate through the imagery:
‘I think how similar the words of the health officials are to those used by politicians. The whole language of disease. How bacteria is said to invade or infiltrate, foreign agents, in the blood, in the lymph, travelling with impunity, reeking destruction’.
During the course of Kana’s presentation, the metaphor of holes is extended to gaps in knowledge. ‘You, Stacy’, he says, ‘were one of the missed cases. And there are many of them. There are also, as you said, the latent cases. If we don’t find them, we can’t stop this disease. We need better diagnostics. And because our diagnostics often aren’t sensitive enough, we miss cases.’
Hardy has humanised the science; but Kana’s science also illuminates the human. Playing with scale, the audience is drawn into the microscopic workings of disease in the body, but also the macroscopic workings of epidemics at a population level. Having witnessed this interweaving of science and personal narrative, verbal and visual imagery, the audience is now deeply invested – both in the life and death of TB bacteria, and the people who carry them. It is a rare feat to have animated illness in this way. When Stacy was first diagnosed, she said she ‘googled TB but understood nothing’.
‘The health websites aimed at the public focus on symptoms and treatment. The journals are impenetrable, written in dense medical jargon. Their entire focus is categorisation. There is no space for life – neither the lived experience of the infected nor of the life of the disease itself.’
As the panel continues, Hardy’s writing serves as the bridge between the biological, personal and political. She reflects on her experience of the archives, excavating medical histories:
‘A museum of lungs; human bodies transformed into planes of visibility. X-rays and tissue samples. An archive made out of skin and bone. Air sucked out. Flattened and numerically filed away. I find reports - wives looking for their husbands, dead or missing, fallen from the earth surfaces, buried in a tunnel, returning only to die, bringing death with them, their spittle rains poison, kisses carry death on their tongue’.
It is an account that panel chair, Barry Kistnasamy, knows all too well. He is commissioner of the South African government’s Compensation Fund for Occupational Diseases. He, too, has amassed files and records of ex-mineworkers and their families, of the dead and missing, and of the bereaved. ‘It is the profits of the mines, the profits off the labour of miners, that built this very building.’ The workshop is being held at Emoyeni, an old Victorian building in Johannesburg’s Parktown. Only a year before, it had been the site of the Life Esidimeni trials, in which the state reckoned with the untimely deaths of 143 mistreated psychiatric patients. Emoyeni is a bourgeois venue, only metres away from Charlotte Maxeke Academic Hospital, in which hundreds of the city’s poor and working-class residents are waiting to be served.
Back at the workshop, as Kistnasamy explains the compensation fund, a man in the audience stands up and announces that he too might be eligible for compensation. He describes his past experience as an underground mineworker, including his narrow escape from the Kinross mining disaster, and later, he and Kistnasamy exchange details.
The exchange provides the perfect entry-point for the panel’s fourth speaker, Carina du Toit. She and her team at the Legal Resources Centre levelled a historic class action that saw thousands of mining families affected by silicosis compensated.
‘Silicosis is irreversible, incurable, painful, but utterly preventable’, Carina says. ‘The idea that there was a gross miscarriage of justice in causing silicosis was very important to us. You can only get it in mining’.
In the final panel presentation, the lives of mining families like these are brought to life through film. Two high school students have documented the lives of ex-mineworkers in Khayelitsha, many of whom have been affected by TB, silicosis and asthma. The project is the outcome of a pioneering youth programme, Eh!Woza, which bridges science and the arts to tackle TB.
At the end of the panel, the audience is undoubtedly left with more questions than answers. To traverse such breadth of topics and disciplines in a single session can feel like one is simply skimming the surface. But what the conversation has done is to allow its participants to see the questions through a richer lens. With each presenter came a new way of feeling or reading the questions.
Over the course of four days, there are eight other panels. They explore a range of systemic and syndemic questions: Mental Health, The Dis-ease about Food, Care as Work and The Lives of Pharmaceuticals. Presenters include historians, social scientists, photographers, medical doctors, poets, journalists and healers. Amidst panels about content, are those about practice: How does one do transdisciplinary work? How does one write about suffering without reproducing it? And how does one translate their work for multiple audiences?
There is, of course, a long way to go in crafting truly transdisciplinary approaches to health and illness. It will require financial and institutional support, and a boldness to work outside the rules of conventional publishing and proposal writing. Nevertheless, the State of Dis-ease workshop contributed a set of additional tools that might take this forward. More important than the unabashedly multi-disciplinary and multi-media panels, or the choice of topics, was the attitude of those who participated. When the conversations worked best, it was because each participant brought humility and empathy along with their expertise. Each had to step outside the comfort of their own jargon and ways of knowing, and trust that the position of the ‘in-expert’ is also the most curious: the most willing to dive into the hole.
Beth Vale is an independent writer, researcher, and consultant, whose work spans health anthropology, creative non-fiction and body politics. She is currently working on a book that tells the recent history of South Africa’s desert heartland through stories of health and healing. Outside of her paid work, she is an aspiring slam poet, podcaster and songwriter.
Division of Social and Behavioural Sciences
School of Public Health and Family Medicine
Level 3 Falmouth Building
University of Cape Town