People behind the numbers

This post is about four courageous men: Mr. Mkoko, Mr. Sagati, Mr. Ndlagamandla and Mr. Mahaba.

It’s also about the remarkable thing they did that allowed me to find out about them: they all agreed to be featured in Jonathan Smith’s documentary film, They Go to Die.

The four men worked as gold miners in South Africa, and all contracted tuberculosis (TB) and HIV while working. After they were declared unfit to work, the mining hospitals discharged them to their homes in rural South Africa and Swaziland.

The problem? The mining companies sent them home without further treatment or provision for their future care. And they returned to areas with inadequate health care and resources that would help prolong their lives. Sent home to die – hence the film’s title, “They Go to Die” – which actually comes from public health references to the all too common practice of sending miners home when they become too ill to work.

Smith was an epidemiologist from Yale doing research on TB and HIV infections in the South African gold mining industry when he decided to make the film. He wasn’t a filmmaker, but he realised that decades of studies and statistics weren’t making any difference in the outcomes for miners – miners were still becoming infected, and they were still dying, and the industry practice was still continuing.

So Smith asked Mkoko, Sagati, Ndlagamandla and Mahaba if he could tell their stories, and they and their families agreed. They invited Smith to live in their homes and film their daily lives. Not only did they agree to open their homes to him, but they did so when they and their families were going through very difficult times.

By doing so, they’ve allowed Smith to put a human face on a shockingly neglected situation in which unacceptable numbers of miners contract TB and HIV as a result of their work, yet receive no compensation or care. Says Smith, “these men were my friends, and they died of a preventable, curable disease. But they were by no means outliers. In fact, they were representative of tens of thousands of men each year.”

Smith is now working to complete the film. He’s looking for resources and partnerships that can help him finish it – and help prompt industry and government action to prevent and deal with the epidemic. Part of this effort includes crowdsourcing to enable others to support the film, through a Kickstarter page. (If you do nothing else, please check it and the film trailer above out.) It also includes finishing the film in time to screen it at a meeting of mining sector CEOs and decision-makers later this year.

Smith notes that despite the film’s topic, this is not a film about death and disease. Its focus is the men and the relationships that sustain them, and the power of human connections. And it’s not just a film. Smith intends to use it to call for mining companies, unions and governments to be held accountable for mineworkers’ health and health care.

Statistics can be powerful. Studies show us, for example, that mineworkers are infected by TB at 28 times the rate of a WHO-declared emergency. Yet the numbers alone aren't changing the situation. Smith believes that if people understand how individuals have been affected, they’ll respond: “If we turn an epidemic into an emotion, then we motivate change.”

It’s an ambitious and important undertaking. Please check out Smith’s website, and his crowdsourcing site (before October 24, 2011 if you can). You’ll find out more about Mkoko, Sagati, Ndlagamandla and Mahaba and their families. And help lend a voice to people affected by this tragic and preventable situation.

Photo voices

On World AIDS Day today, I’m posting the images and words of a few people who speak for themselves.

The photos below are from the exhibit Photo-Voice: HIV and AIDS Education for Young People in Africa, presented by UNESCO and the Virginio Bruni Tedeschi Foundation. The photos in Photo-Voice were taken by young people, parents and teachers from Angola, Lesotho, Namibia and Swaziland.

The photographers focused on two themes: students and teachers affected by HIV and AIDS, and young people, sexuality and HIV.

Here are a few of the photos, along with captions written by the photographer who took each picture. (Photos are courtesy of UNESCO.)


© UNESCO/SWANNEPHA, Welile, female student, Swaziland - This is my teacher, she is also HIV positive, like me. She made my life easier by disclosing her status to us in class. She has restored my self esteem. I just love her. She is my pillar.

 

© UNESCO/SWANNEPHA, Kehtsiwe, 14 years old, female student, Swaziland - I am living with HIV and have been on antiretroviral treatment since 2002. I got sick early in my childhood. At school I faced challenges of being stigmatised and discriminated against by my teacher. She told other children not to play with me and also told me in the face that she was ‘tired of teaching a sick child’. I confronted her and told her that I could not change the situation. She then accepted my situation and wrote a note to apologise to my mother. I pray that other children never get to experience such injustice. I aspire to be surgeon; I already perform operations on frogs.

© UNESCO/RNP+ Angola, Cristovao, 14 years old, male student, Angola - My parents and two of my brothers are HIV positive. Very soon, as a result of their condition, our income started to decrease and I went to study at community school. HIV and AIDS is taught and openly discussed in schools managed by NGOs which have specific activities, but now that I am in public school I don’t hear about HIV and AIDS anymore, with the exception of the biology teacher... It would be good for schools (from primary schools to universities) to speak not only about HIV and AIDS but also about other sexually transmitted diseases. I would like to join a group of activists in my school in to fight HIV.

© UNESCO/LENEPWHA, Peete, 23 years old, male student, Lesotho - Sometimes when I think back on my life for the past ten years, I realise that I did not have enough knowledge on the pandemic to take care of myself. My young friends remind me that life should be enjoyed, and yet I worry that unless they are protected from contracting HIV they will soon have the virus like me and may not enjoy life as they do now. They deserve to be happy and live life with no worries. I believe that they should be adequately prepared now at a very early age so that they will grow into young adults competent enough to take care of themselves and protect others from HIV.

Photo-Voice is part of a UNESCO project funded by the Virginio Bruni Tedeschi Foundation (created by Marisa Bruni Tedeschi in memory of her son Virginio – Carla Bruni-Sarkozy’s brother – who passed away of AIDS-related complications in 2006). Photo-Voice organisers say the exhibit uses the power of images to enable participants to "to bear witness" and to raise awareness.

These photos are by African photographers -- but AIDS is a global issue. Sub-Saharan Africa is home to 22 million of the 33 million people living with HIV, but HIV incidence has fallen over 25 percent in 22 Sub-Saharan African countries since 2001, while it's increasing in other parts of the world (such as Eastern Europe and Central Asia). In North America and Western Europe, an estimated 100,000 people were newly infected in 2009 compared to 97,000 in 2001. We're in this together.

HIV and AIDS is a human rights issue, and dealing with it is a joint responsibility. It doesn't call for pity; it calls for empathy, solidarity and action.