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Heroic care

Home-based care worker Olipa Mkandawire (right), cares for a man living with AIDS in Matuli, Malawi. She represents the Livingstonia Synod AIDS Program of the Church of Central Africa Presbyterian.

Although much of the news at this year’s International AIDS Conference, which is about to get underway in Washington, DC, focuses on progress toward finding a vaccine or cure for the disease, those who struggle on the front lines against the pandemic often get ignored. There are hundreds of thousands of home-based caregivers who are the unsung heroes of the AIDS response. They bring basic health care with them as they visit people in their homes, but more importantly they bring support and acceptance. Their visits de-stigmatize the disease and remove the fear and isolation that often accompany it.

It’s often women—usually older women, often grandmothers—who do this work. People like Olipa Mkandawire, who I photographed caring for a man living with AIDS in Matuli, Malawi. She is a volunteer home-based caregiver with the AIDS Program of the Livingstonia Synod of the Church of Central Africa Presbyterian.

Caregivers in Malawi, according to a study by the Huairou Commission, work an average of 8.2 hours per week. Some of them have organized an alliance to pressure the government for better support. But they’ll continue their work whether official support is present or not, simply because it’s the right thing to do. Many carry out their work as part of faith-based organizations, which provide about 40 percent of health services in Malawi.

According to Matilda Maluza, the national health secretary for the Catholic bishops’ conference of Malawi, more than 80 percent of caregivers in her country are women and they’re not adequately compensated for their work. “We are taking advantage of women, who are born to be caregivers. We’re violating the rights of the woman, because she has other roles. I’m a woman, but I also go to work. When I come home I want to sit down and rest. But if I’ve got a number of people to care for, as a woman I’m expected to go care for them. I have to cook and fetch water and firewood, and then I’m expected to care for others. When do I get time to rest? Just because you’re a woman doesn’t mean you should do everything,” she says. “Men should contribute more, but men tend to only get involved when there is pay involved. It’s time for that to change.”

Father Richard Bauer has had a different experience in Namibia, where he says men surprised him.

“We started training men because we had the idea that a few of them could help convince other men to support the women doing the work, because women caregivers often got in trouble with their male partners. The male partners would say, ‘Why are you doing all that? You should be out in the fields, or at home or caring for kids.’ Our initial idea was to get the men to support the women, but they said, ‘No, we want to do it ourselves.’ We started a couple of pilot programs of men providing home care for men. It was unbelievable. We now have more men on the waiting list to be caregivers than we have a budget to train and supervise them,” he says.

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