From HIV Victims to Celluloid Heroines


By Surekha Kadapa-Bose, Womens Feature Service

When Sally and Gabriela Gutierrez-Dewar, active supporters of the Anti-apartheid Movement of the late 1980s, decided to travel to South Africa in 1992 to experience the unbelievable political transformation of the country, little did they know that they would meet up with women who were relentlessly working to ease the lives of HIV/AIDS patients in the sub-Saharan region.

“What impressed us about this group was that it comprised both social workers and patients. Also, their positive attitude towards the disease and their will to get treated and help other victims to accept and find ways to fight the ailment was inspiring,” recalls Sally, a visual artist currently based in Madrid. So the Spanish sisters went ahead and captured the amazing lives of these women on celluloid. They made an 88-minute film, ‘Tapologo’, on the mammoth work being done by a group of caregivers, which includes HIV-infected former sex workers, who have created a network called ‘Tapologo in Freedom Park’, a squatter settlement in South Africa. They have learnt to be home-based care-workers, helping victims, orphans and affected children.

Although it is a local story, ‘Tapologo’ has global relevance. It is a successful module for HIV care, which has the potential to be replicated in the Third World countries fighting the deadly and fast-spreading disease. Moving from squalor and degradation to dignity and hope, the women are portrayed as protagonists of their own healing process – not victims.

It was while attending the freedom celebrations in South Africa that the filmmakers met Bishop Kevin Dowling, the founder and chairperson of Tapologo. “It took us nearly two years to complete the documentary with the help of Bishop Dowling and other social workers. Because of their presence it became easy for us to visit the homes of the victims, talk to them and film them in their tin shanties,” reveals Gabriela.

Tapologo, which means a place of peace and rest, was formed in 1998 and is basically a network of retired nurses, social workers, doctors, religious leaders who have been ostracised by the official church, former sex workers and patients. This community project has received worldwide recognition. In fact, Bishop Dowling recently featured in the list of 37 Heroes “changing the world for the better”, brought out by ‘Time’ magazine.

This film sticks in the minds of viewers because, even though the subject is tragic, there are no sad faces and no one is cursing their fate or the State or someone else for their plight. Affected women are cajoled to come to Tapologo’s central office, which is close to Rustenburg in the North West Province of South Africa. Incidentally, the office also houses a hospital and counselling centre. Built on the principles of innovative eco-architecture, the Tapologo hospice combines the traditional values of personal care and compassion, with the latest in medical solutions.

Most of the victims are residents of Freedom Park, a squalid illegal squatter’s colony made up of tin shanties, located near the platinum mines of Rustenburg. Nearly 20,000 illegal immigrants from countries such as Mozambique, Lesotho, Swaziland and Eastern Cape reside here. “Being illegal, the workers are exploited by the employers and so don’t get their dues in salary, medical aid, and so on. As they don’t have a passport or visa, they can’t even complain. Also, due to the bad living conditions, most do not bring their families,” reveals Sally.

So the men get together with any untrained, unskilled women who can cook, clean, look after the home and sleep with them. The women are willing to bed these men in exchange for free meals and a place to live, even if it is for short periods, becoming unwilling sex workers. This invariably leads to many succumbing to the HIV virus.

Like in most societies where AIDS patients are treated as untouchables, even the denizens of Freedom Park are shunned by society, which is also why many choose to keep their condition under wraps. Until recently, many of them were left to die a lonely and painful death, with the constant worry that their children would have no one to support them. Not anymore.

In 1997, Sister Georgina and Brother Joseph, who were attached to the local church, started visiting this colony to treat the ailing. When they realised the devastating magnitude of the problem, the concept of Tapologo and the idea to have home caregivers – paramedics visiting the homes of those living with HIV/AIDS – took shape.

Initially, 12 local women were trained to visit and care for the sick in their homes. They were also trained as crisis counsellors. As the days went by, the number of home caregivers increased to 60. Today, there are 100 caregivers who look after more than 2,000 people in a month. They visit patients, clean up their homes and utensils, make food, and urge them to take their medicines regularly. Incidentally, most caregivers are living with HIV themselves. “I also take medicines. And see how I have put on weight and look healthy,” says one caregiver, a former sex worker, while mopping the floor of a derelict shanty of a HIV-infected helpless woman who is so weak she can’t even lift her baby. That single sequence in the film explains the entire idea behind Tapologo.

Although the Gutierrez-Dewar sisters started shooting the documentary many years after the organisation began, they have captured the essence of Tapologo in their film, which is in English and Tswana with English subtitles. They have used a language that allowed them to follow the daily lives of some of the women from the network, and, at the same time, contextualise the situation in which thousands of black women in South Africa find themselves.

Selina, one of the victims associated with the movement from the beginning, reveals, “When I was diagnosed with HIV, I was really scared. I tried my best to hide it from others till it became too difficult to perform my routine duties and my boyfriend left me to my fate.” She was taken to the Tapologo hospital for treatment. Even her child received the ART treatment. “The happiness of the HIV-infected women when they come to know that after treatment their child has been freed of the disease knows no bounds,” explains Selina in the film.

To these women, the church has not only provided medical aid and financial support until they become healthy enough to fend for themselves, it has even convinced them to use condoms without feeling guilty. Says Bishop Dowling in the film, “There is no point in asking these women to abstain from sex and not use condom as is the norm of the Roman Catholic Church. Sex work for these women is their only means of earning as they have to worry about the food for the next day’s meal – for themselves and their kids.”

As one HIV-positive woman and a former sex-worker with a naughty smile, put it, “I tell men that I am HIV positive. So, if you want me, use condoms. Many men refuse so I refuse them. Now my present boyfriend agreed to the use of condom. So I am staying with him!”

Womens Feature Service covers developmental, political, social and economic issues in India and around the globe. To get these articles for your publication, contact WFS at the website.