Feminist Knowledge | Health/Reproductive Health

A Different Kind of Revolution*

by Sisonke Msimang

Women's work is the only work that is visible when it is not done. (Anonymous)

I am facilitating a workshop in Cape Town. It has been convened so that we can talk about women, care and HIV/AIDS. Our participants are women from all over the region: from government departments and NGOs and associations of women living with HIV/AIDS. They come full of stories and laughter and eyes too full of a certain kind of knowing. Many of them have loved someone through the horror and solitude of death. They come with toiletry bags full of ARVs, vitamins and herbs to make them feel better, bibles packed neatly between sweaters, beads across their breasts underneath their clothes; since AIDS, everyone has become a secret sangoma invoking ancestral hope. They come, each of them, because they are women.

On the first day of the workshop, I ask the participants to talk to someone they have never spoken to before. In two minutes, they have told each other about their children, their husbands, their lovers, their workplaces. AIDS has made all of us understand that there is no time to waste anymore on idle chit-chat. One woman says quietly, "I am glad I came here. When I go home I am taking my husband to court for abusing me. He hits me because of my status. I am tired of it." I hope in my heart, that she has the strength to carry the courage home with her.

Quite quickly and remarkably, within an hour of meeting, we are in at the deep end, swimming in the mundane and ordinary muck that makes women's lives difficult - the taken-for-granted-ness of our presence as nurturers, carers, cleaners, cooks, feeders of children day-care providers, home-based carers, mothers, daughters, aunts, grandmothers, wives. Throughout the week we talk about how painful women's work can be, how untenable in the face of an illness that devours bed-sheets, dirties water in basins, depletes human energy and inspires defeat as often as it begs us to reveal our humanity. Someone says, "We trained as nurses so that we could help people get better. Now we are discharging patients into the morgue." We are silent, respecting what she has said and feeling that, despite our best efforts, we are losing this fight.

But then there is sunshine. In small groups, after tea, we dream up families. We give each member a name and a description. There are matriarchs and patriarchs, maids and madams, first wives and favourite sons. We ask each group to imagine that their family exists in a world without HIV/AIDS. Then we break for lunch and my co-facilitators sneak around the room "infecting" some of their imaginary family members with a little red dot that means "HIV". When our participants return, they discover our red dots. We ask them to picture their families five years into the future. What will these families look like?

We get the answers we expect: babies dead, parents dying, grandmothers overloaded, girls who have turned to prostitution. But we also get the unexpected. One group has taken the road less travelled. Their family gets counselling, plans their future together, and in five years time are a healthy family, going through the ups and downs of life, just like anyone else. They are not rich: he is a trucker, she is an at-home mother and they have too many children. The mother and father talk about their problems openly with their children and live with the virus in a responsible manner. They enjoy a healthy sex life and use condoms to ensure that they don't reinfect one another.

It is a vision of the kind of world that is possible. Without donor funding and complex project documents, with just the seed of an idea, this group has managed to transform the usual patterns associated with "infection". For the other groups in our exercise, AIDS has a totally devastating impact; but the imagined familial dynamics in this group prevents it
from being ripped apart. There is a crucial lesson here: the big things like drugs and hospitals will indisputably turn this epidemic around. But the little things also matter: respect, love, companionship and, of course, the relationships based on gender equality that foster these feelings and values. It is the absence of these relationships that women consistently register when they speak and write about their experiences.

This clearly emerges towards the end of the first day, when we open up space to talk about how participants feel about caring for someone who is sick. I write on a flipchart: "Once I took care of X for a few days/ weeks / months and I felt…" I ask the group to write for five minutes in silence. An emotional floodgate is opened when they share what they have written. Some are crying as they read their own words or listen to those of others. I am amazed by the sound of anger: consonants of rage strung together, gathering a force that makes the room buzz. A participant from Zimbabwe sums it up, "We love those who are sick because they are our family. But we are in a bind because this is hard work, and we wouldn't be expected to do it all if we weren't women. We would not be having this conversation if we were men."

And here lies the crux of the matter: domestic work is expected of women precisely because they are women. So women are angry because they are at home taking care of someone whom they may or may not love, someone who is dying. Women are angry because no one is helping this dying person except other women who are also tired. Women are angry because sometimes, even while caring for this brother or sister or friend or lover, they are sick themselves but cannot afford to worry about it, cannot even stop to think about it. Women are angry because they are letting their daughters down, pulling them out of school so that they too can help, breaking down in tears in front of them, needing them to do so much. Women are angry because there are not enough hands to do all the work, not enough hours in the day to finish the chores.

And there are, of course, unhealthy doses of guilt mixed in with the anger. Women feel guilty about still being alive. They feel guilty because they are angry with someone who is sick, who needs their help so desperately. They feel guilty because their daughters and sisters are being cheated of their girlhoods, are becoming hard-faced and furrow-browed too soon, are too quickly able to tell the shopkeeper that the money will come at the end of the month.

And, clearly, women are depressed. They have lost their soul-mates, men they loved fiercely and tirelessly, whose smiles were able to pierce their very marrow. They have lost lovers and friends, those whose laughter made everything seem somehow easier to bear, whose fingers on foreheads, on temples and backs, were strength itself. They are losing their lives and their children to soul-less streets that devour tenderness and spit out hollow-faced, vacant-eyed aliens. Most important of all, women are depressed because the men who are supposed to love them sit passively and watch as beds get made and water gets fetched and children are carried and people die in women's arms, although it never occurs to these men that the caring business is hard, painful and miserable, and that they should stand up and help.

The unsupportiveness of men in women's families and immediate communities is reflected in the attitudes of the men who dominate the broader contexts that women inhabit. Politicians tell us slickly that communities must care for people living with HIV/AIDS. They are walking billboards for slogans manufactured by the United Nations: "I care - do you?" or "My friend with AIDS is still my friend." What does this mean? We are no longer children playing in the innocence of an epidemic that can vanquished by simplistic statements. Of course my friend with AIDS is still my friend. I want to laugh at the slogan; it's so puerile. But I suppose it would not be easy to say, "My friend with AIDS needs ARVs"; "My friend with AIDS needs to be hospitalised" or "My friend with AIDS needs me to feed him and I am too tired to continue." It doesn't look good on a T-shirt.

I have learned that African women often avoid criticising the African men who run our countries. We frequently accept that they have allowed our health systems to atrophy, and watch wordlessly as hospitals push the dying back into our homes. We fold our disappointment into tired arms and take the sick back. They will die unnecessarily of a disease that none of us wants to name, and we will be there to cook and clean for the mourners. We will not argue or raise our voices against our leaders for deserting us in our time of need. We know that they will only point to the West and blame them for our troubles.

In these frightening times, what words can African women speak that will be heard? To whom can we appeal for help? Perhaps, finally, concertedly, it is time for us to call for a different kind of revolution, one in which our brothers, husbands, sons, fathers and lovers change nappies, sweep floors and hold the dying as they weep. We cannot care for the sick, clean our homes, fetch water, collect firewood, bathe children and prepare meals without their help. Too many of us are also sick.

Throughout the workshop we keep reminding each other that there are good men out there. We give examples of men who are opposed to violence against women. Some speak about two men who are so loving and caring that they have asked relatives to come and take care of their wives. I bite my tongue and don't ask whether the relatives nursing the wives of these good men are women. One participant tells us a story about her husband who cleans the house, bathes the children, and cooks for his family. Between thirty of us, there is only one man we can talk about who does these things that are part of women's everyday existence. The other participants do not believe that he really exists. "Is he white?" someone asks. "No," she responds. "He's Venda." The room "oohs" and "ahhs." We are so used to accepting so little. Sweeping the floor and washing the dishes seem to be taking things a step too far. There is "culture" to consider after all.

In the name of "culture", women must work fingers to the bone so that male egos are not upset. In the name of "culture", women must acquiesce when men we do not trust insist on having sex with us without a condom. In the name of "culture", we cannot speak about those solutions, requiring the commitment and effort of our politicians and the least "outside funding", that would help most. We seem prepared to die rather than address the gender oppression perpetuated in the name of "culture".

Maybe if we could stand back from the idea of the sanctity of "culture" for a moment, it would strike us as bizarre that grown-ups with hands, feet and able bodies, can be let off the hook because they happen to have penises. Perhaps we would find it absurd that there is always an assumption that those who have vaginas will always be there to clean up, to pick up, to give up on their own dreams. Maybe we would be ashamed to see that when employers sack, when hospitals turn away, when governments refuse to give grants, women are always there to pick up the pieces.

The burden that AIDS places on women in their homes makes me wonder if all the money spent on gender and development projects has had any impact in addressing the situation of women. In the end, despite the quantity of financial and other assistance, it is women who unceasingly support and care for the dying. Meanwhile, our men, whose behaviour and attitudes are justified by "culture", refuse to give up their privileges and rights to oppress the very people who will nurse them when it is their turn to die.
There will come a time when women, exhausted and angry, will refuse to pick up, to clean up, to give up. There will come a time when women let the pieces fall where they may. What then?

* This article was written after I facilitated the Sub-Regional Consultation on Gender & HIV/AIDS from 13 to 15 May, 2003. The meeting was convened as a partnership between the Positive Women's Network, the Youth Against AIDS Network, and the United Nations Development Fund for Women. The opinions expressed are my own, and do not reflect in any way those of any of the partner organisations.