South African Hospitals Fight Disease with Beads

Photo Courtesy of Anne Taylor. HIV-positive South African women learn to bead in order to support their families.

It is difficult to extract information from Florence about her life. Like the other HIV-positive women who are participating in the skills development programme at Victoria Hospital, she is afraid to open up about her struggle for survival. Although South Africa’s constitution focuses on human rights, there is still a high level of discrimination against people living with AIDS and HIV. The vast majority of people in South Africa are uneducated, especially about this disease, and thus are afraid of getting the disease themselves without knowing how it is contracted.

Anna-Marie Nienaber, coordinator and fundraiser for the Victoria Hospital Facility Board, is one of the Ncedanani administrators who has worked with the women for a few months and has won some of their trust. She informed me that Florence comes from a tightly-knit family where she receives moral support from her family members and her mother. Unfortunately, Florence’s mother is also sick and is not strong enough to work. The family relies on the mother’s small monthly pension fund, which barely covers a week’s worth of food.

In traditional African families, a family member who cannot contribute towards the family is often misused and disrespected. For this reason, no matter how sick Florence feels, she knows she is expected to contribute her meagre income. Tumi*, another woman participating in the Ncedanani project, is also cared for by her mother. Like Florence, she has no other source of income besides what she earns from Victoria Hospital. It is suspected that Tumi’s baby is also HIV-positive, but she refuses to talk about the situation to anyone.

Although there has been an increase in AIDS awareness campaigns, the number of people infected with HIV in South Africa is on the rise. Intervention programmes focus mainly on disease prevention, while the millions of people who already live with AIDS and HIV go largely neglected. The statistics are grim. In their December 2006 AIDS Epidemic Update, UNAIDS and the World Health Organization found that approximately 39.5 million people worldwide live with HIV and that "sub-Saharan Africa continues to bear the brunt of the global epidemic." Sixty-three percent of all adults and children with HIV live in sub-Saharan Africa. Thirty-two percent of the world's HIV-positive population live in southern Africa. Thirty-four percent of all deaths due to AIDS in 2006 occurred in southern Africa.

AIDS is exacerbated by high levels of poverty among African people, especially those living in informal settlements. They make their houses out of corrugated iron and plastic, which often leak during the rain and have no access to electricity or running water. Women are biologically more likely to contract AIDS, but what makes them particularly vulnerable is poverty: Many women who live in the informal settlements are raped and become infected with the HIV virus. Unequal gender dynamics in traditional African households often leave women powerless to make decisions about when they want to have sexual intercourse, condom usage, or how many children they want to have. The AIDS Epidemic Report reveals that 13.3 million women in sub-Saharan Africa are infected with the HIV virus and that 59 percent of the HIV-infected population are women.

Many HIV-infected women must still support their children, some of whom are HIV-positive as well due to mother-to-baby transmission of the virus during pregnancy. Mother-to-baby transmission can sometimes be prevented with antiretroviral drugs, but the extreme poverty of these women means that they cannot even afford the transport to get to a hospital for treatment. “These women struggle to keep their families together. Poverty creates broken homes. For example, there is often no money to educate their children who end up running away because of stressful living conditions,” Nienaber said. “HIV on top of these conditions means that these women do not stand a chance if we do not help them.”

The Apartheid era left many African women uneducated and under-qualified for permanent employment, so when staff members at Victoria Hospital saw the desperation of their unemployed, HIV-positive patients, they decided to start a skills development programme to help them out. Despite the enormous pressures that South African public hospital staff members are under, they are often responsible for starting remarkable projects such as the Ncedanani project at Victoria Hospital. The hospital has had to increase its capacity to council HIV and AIDS patients in its wards and clinics through support groups or individual counselling. Victoria Hospital also relies on food vouchers donated by a supermarket to run an integrated Nutrition Programme for underweight HIV-positive and tuberculosis patients so that they can obtain nutritional food and food supplementation.

The lives of the women partaking in Ncedanani are not as vibrant and colourful as the beads scattered before them. It is almost impossible for these women to relax when they are constantly worrying about their next meal, and the stress can negatively affect their health. “Money is my only worry because I need to feed and clothe my baby,” Tumi said. Unfortunately, the government does not provide any funding for this project, so Victoria Hospital’s Facility Board must raise the money. Leon Engels, secretary and fundraiser on the hospital’s facility board, informed me that, despite the financial obstacles, he hopes to create a model that hospitals and other institutions in Africa can adopt to help people who cannot help themselves through crafts, computer skills, and literacy classes. “The sky is the limit,” he said.

Yet the project faces many difficulties due to lack of funding and the participants’ compromised health. First, the women have no official space to work in, so they must spread out their crafts in a plastic-covered shelter outside the hospital. In winter, the rain and cold are as relentless as the AIDS virus, and often the women have to abandon their posts, resulting in lower profits that day. “If we have a suitable venue where we can store the craft materials, it would be easier to invite volunteers who own craft-related businesses to join us,” Nienaber said. Travelling a long distance to get to the hospital also tires out the women, and many risk losing their eyesight, which they need for the detailed work, from HIV-related cataracts and blindness.

Financial problems trickle down to the women as well: Some expected to earn more money for their time-consuming crafts, but consumers are not willing to pay much for the products. The women told me that it can take them a day to make one or two items. However, Tumi and Florence are enthusiastic about the beaded pen sleeves and key rings that two companies have recently ordered. Creating items that companies can buy to give away as promotional gifts may be the most viable way of breaking into the market for projects of this kind. Nienaber encourages the women to create their own beadwork while guiding them to make items that will sell, but she does not need to teach them how to bead. “Beading is a trademark of black culture and upbringing,” she said. “Most of them are able to do it or learn it very quickly.”

Both Florence and Tumi said it was “very difficult at first” to create products suitable for the white South African market, which has Western tastes. Nienaber is determined to help the ladies create high quality beadwork that the Facility Board will be able to market. The Facility Board would like to expand the project to include fabric painting, knitting, and needlework crafts that the women can make at home. When teaching new craft skills, the hospital tries to choose ones that the women can make at home for their convenience.

When women can take their work home, they pass their skills onto their families and can bond emotionally with one another while they work. “The skills are carried from one person to another. When the mothers of the women assist them in making beaded items, the younger sisters of the women often like to become involved too,” Nienaber said. Additionally, Victoria Hospital educates the women participating in Ncedanani about AIDS, and the project becomes a type of support group as women talk to one another about their shared hardships. An educational project infused with creativity and camaraderie provides a therapeutic value to these women’s lives, and Tumi claims that it “takes her mind off things”.

Teaching HIV-positive South Africans new skills means that they will not be a burden on the country in the long run. “All these women need is a hand up so that they can afford the basic necessities in life, such as healthcare and nutritious food,” Engels said. Skills development programmes for HIV and AIDS patients have proved that education can be a treatment for these diseases, in addition to the medical advancements on the horizon.

* Name has been changed to protect source’s identity.