Mining The Data
By Wyatt Williams. Photography by Dustin Chambers & the Visual Epidemiology team.
How an epidemic of tuberculosis in the gold mines of South Africa convinced an epidemiologist and his brother from Georgia to become filmmakers
Yale University & Machetes
When you think of a thesis project from an epidemiology student working on his masters in public health at Yale University, do you think of spoken word poetry?
“Do you know what it feels like to have a machete taken to your lungs?
To have a drill in your hand so long you forget it is not a part of your body?
To work at a place where the light at the end of the tunnel is more than a figure of speech?
Welcome to the mines.”
Or do you think that kind of academic work should sound like this?
“The protonated POA accumulates in the cell and causes cytoplasmic acidification and reduces cell membrane energy, disrupting the proton motive force and affecting membrane transport. EMB is a bacteriostatic agent that inhibits the polymerization of arabinan, arabinogalactan, and lipoarabinomannan, thus preventing its biogenesis formation on the cell wall.”
Both excerpts are from the work of Jonathan Smith, an epidemiologist at Yale that is currently completing his PhD at Emory in Atlanta, Georgia. The second quote comes from a paper called “Nanoparticle Delivery of Anti-Tuberculosis Chemotherapy as a Potential Mediator Against Drug-Resistant Tuberculosis” published in 2011 by the Yale Journal of Biology and Medicine. The first quote is the poetry of Clive Smith, as spoken in Jonathan’s first documentary film. Despite how different they sound, both are ways of discussing the same epidemic. It is that difference, the familiarity of storytelling in one phrase and the rigor of science in another, Jonathan is seeking to reconcile in his work.
Sent Home to Die
Jonathan and his brother, Alan, were both born in LaGrange, Georgia, a rural Southern town far from the concerns of gold miners on the African continent. As undergraduate students, Alan studied finance and Jonathan studied biology. Aside from the fact that their grandfather had been a professional photographer in the Navy, the brothers thought little about photography or filmmaking. Neither could have guessed that they would one day be traveling the world to make documentary films.
While studing for his masters at Yale, Jonathan discovered the startling conditions of a tuberculosis epidemic in the gold mines of Sub-Saharan Africa. He eventually wrote hundreds of pages about the situation, but his quick summary goes like this:
“Mine workers generally live in rural regions of Southern Africa, very rural. They come to work in urban mines and then go back home. Work in the mining industry there is contract based. So, you’re not formally employed by the mine, you’re employed by a third party labor contractor. The mine isn’t legally responsible for the miner. This is really important in this conversation because if a miner gets sick with tuberculosis, they’re able to terminate the contract because the miner isn’t able to fulfill the work. They get fired.”
…mines are able to fire workers for doing their job
In other words, the mines are able to fire workers for doing their job and getting sick because of it. Tuberculosis is highly contagious. Miners return to their rural homes often without health care or any other kind of worker’s compensation, spreading the disease and living without treatment.
“That process of men coming to mines, getting sick, and getting sent home was called colloquially ‘being sent home to die,’” Smith says.
Data Needs a Face
The second startling revelation for Smith was that this problem wasn’t exactly a new discovery. “I looked into this situation and realized we already know all of this. We know that men get sick at the mines. We know that South African gold mines have the highest rates of tuberculosis in the world. At first I couldn’t understand. If we know all of this why is the situation still persisting?”
Despite the fact that gold mining has contributed, by some estimates, to 760,000 cases of tuberculosis, the situation causing it continued untreated and largely unchanged. “There was data, so much data, but there was nothing else,” Smith said.
That’s when Smith realized his work as an epidemiologist would require more than data. “We didn’t have a face,” he said.
“The strength of data with the power of storytelling”
And so, lying in bed mulling over this problem, Smith made the curious decision to become a filmmaker. This is not the typical career path for a student of epidemiology studying for a masters in public health. He had no background in it. He had studied biology and chemistry in undergrad. But he found himself searching for a form that could combine “the strength of data with the power of storytelling.” That phrase is now the mission statement of Visual Epidemiology, the filmmaking company that Smith founded with the help of his brother Alan Smith. What better way to elucidate data that is baffling to most? We all know that film has the power to create shared experiences and can shape memories and worldviews.
A Novel & Pragmatic Approach
Visual Epidemiology’s first film, They Go To Die, follows four migrant workers who have contracted drug resistant tuberculosis in the South African gold mines. Of the four miners featured in the film, three have died from tuberculosis. Their films do more than just raise awareness. Jonathan and Alan were invited to share their footage with members of the United Nations and the World Health Organization. The one surviving miner from the film, Mr. Mkoko, was invited to participate in drafting a political commitment to overcome tuberculosis in the mining industry, a document that has now been signed by Presidents and Prime Ministers from all 15 Southern African countries. Further lobbying by Jonathan at sessions of Parliament in the UK has led to millions of dollars in funding to reduce tuberculosis and HIV in Southern African mining communities. Visual Epidemiology successfully turns their process & documentaries into to tools for impactful social change.
Other projects have followed, including Behind the Numbers, a series of short films that profile a range of individuals whose work intersects with the tuberculosis epidemic, and Story of a Girl, a series of films that include self-filmed footage by people living with HIV.
These films stray far from the big numbers or academic studies and often focus on quiet moments…
Throughout all of their work, one gets a sense of deep empathy from Smith’s filmmaking style. These films stray far from the big numbers or academic studies and often focus on quiet moments, the unvarnished reality of living with disease or surviving treatment, the way that lives are lived around and through disease.
It is that touch of very human chronicling that the brothers have brought to a new collaborative venture, Creative Cabin. With this venture, they’re using the same techniques as Visual Epidemiology, but telling the stories of small businesses and non-profits. One video tells the story of an organization that makes dream rooms for children suffering from long-term illness. Another recounts the life of a party DJ.
Ideally, these projects will compliment one another, the commercial work of Creative Cabin helping to fund the expensive work and travel required to make the next Visual Epidemiology films. Creative Cabin clients can take comfort knowing that their commercial needs eventually ripple positively into the world of data science & global health epidemics. A novel & pragmatic approach to say the least.
“Why wouldn’t we want to help out small businesses?” Jonathan asks rhetorically.
“Yeah, we just love storytelling,” Alan says.
Have a question?
atl@thegoatfarm.info
