I met an amazing group of people in Zambia: the Chishilano Home-Based Care Group at the Shelazi Centre. They are a group of about 30 volunteers, who care for people in their community living with HIV/AIDS. The volunteers are all illiterate, so they have written songs about the HIV testing algorithm and the dosing instructions for the HIV medicines to help their patients and themselves remember. When I met with the group members, they spent over two hours sharing their stories and singing these songs. The volunteers sang, they danced, and they talked about how they support one another and those infected with and affected by HIV/AIDS in their community. They talked of the extraordinary changes in their lives and the lives of their patients once they were put on ARVs. Some of these caregivers are also living with HIV themselves, and they talked about how they had come back from the brink of death. 

I had gone to talk to them about the differences in how men and women access services and experience illness. The group had a lot to say about how women are treated, particularly in their families. The volunteers talked about women who lost their husband after disclosing their HIV-positive status—women who had been abandoned with no means of support. The volunteers told stories about women who had been beaten for bringing HIV into the family and how often the first person in a family who tests positive is the one held “responsible,” and this is most often a woman.

The group members also talked about men, how they thought men suffer more from stigma, especially “self stigma,” which keeps them from seeking testing, treatment, and support. When talking about the fear people experience at disclosing their HIV status, the volunteers said that women fear men, and men fear everyone. Women are afraid of being beaten or chased away from their homes, but men are afraid that they will not be seen as men anymore. Men are more likely to become depressed, and their sense of self is likely to be eroded by an HIV-positive diagnosis, especially if followed by illness or job loss. The volunteers also pointed out that many men have smaller support networks than women, and few men have friends that come to see them when they are sick.     

But what this amazing group of volunteers did not talk about was that they are 29 women and 1 man. When I pointed it out, they laughed and said yes, this is not work that men like to do. Men do not like to bathe someone or to be around the sick. The volunteers said it was hard work, taking care of the sick and their families, especially since many of the caregivers themselves were ill. But if they did not take care of those in their community who were affected by this disease, who would?

The work of caring for their communities put a financial burden on many of them, who had to pay for transport since their patients are scattered. No one in the group owned a bicycle, let alone a car. Their main ‘complaint,’ if I can use that word, was that they felt guilty showing up without food or something to offer the sick, so they bought things with their own money or shared their own meager food. I had to remind myself that these women and man were all volunteers, but when I asked what could be done to help them in their work, not one asked for a salary. They asked for transport support or bicycles and food to take to the ill so that they never had to go to someone’s house “with nothing in [their] hands” again.

“What extraordinary people,” I thought. It also struck me that they were perfect examples of the gender concept of the triple roles of women:

• Reproductive: they bear and care for the children and sustain all of the others in their families.
• Productive: they engage in activities to generate wealth or food for themselves and their families.
• Community: they look after the welfare of the community.

I wanted to celebrate them and encourage them, but I also want to challenge a system that adds to these women’s burden. I have seen it all over the world: health and development programs that are built on the unpaid volunteer labor of women. In one program I worked on many years ago in South Asia, all of the unpaid family planning volunteers were women, and all of the paid supervisors of the volunteers were men. This inequitable structure in the informal health workforce mimics the one found in the formal health sector [1]. I am not suggesting that people should not work to build their communities and support one another. Clearly, these women got meaning out of their work and emotional support from participating in the group. But, I am disturbed at the pervasive inequity in health and development volunteer work, which is particularly acute among those caring for people affected by and infected with HIV. The disproportionate ratio of women to men I found among the Chishilano Home-Based Care Group is repeated all over the world, with women and girls paying the cost in terms of lost education, income, and career opportunities [2,3].

Today, on the 100^th anniversary of International Women’s Day, I want to urge us all to do more than just prepare these women to carry out their volunteer work. Yes, we need to guarantee groups of women and men—like the one I met in Zambia—the training, resource materials, and accurate information to effectively and appropriately care for the sick. But we need to do more to meet the needs of the women themselves by getting financial resources into their hands. At a minimum, we need to see that carrying out volunteer work doesn’t end up costing the women in terms of transport or food or their own health. We can also work harder to connect them to income-generating activities, self-help groups, revolving funds, and skills training that help the women gain literacy, numeracy, and employment training—because on International Women’s Day, the 29 women and 1 man of the Chishilano Home-Based Care Group deserve so much more than a shout out.

References

1. Newman C. 2009.  Alleviating the burden of responsibility: men as providers of community-based HIV/AIDS care and support in Lesotho. Chapel Hill, NC: Capacity Project, IntraHealth International.

2. Ogden J., E. Simel, C. Grown. 2006. Expanding the care continuum for HIV/AIDS:

bringing carrers into focus. Health Policy Plan 21(5):333-342.

3. Sen G., P. Östlin, A. George. 2007. Unequal, unfair, ineffective and inefficient gender

inequity in health: why it exists and how we can change it.Geneva: World Health Organization Commission on Social Determinants of Health.

IntraHealth's Gender Equality information page.

IntraHealth's Gender Equality resources.