In a country where people living with HIV/AIDS are routinely shunned and ignored, a group of HIV-positive Vietnamese women have organized to share their experiences, support each other, and help others who are living with (and too often dying of) the disease.
The neighbors know what is going on when they hear peals of laughter coming from the house of Pham Thi Hue. The dying women have gotten together again.
In the U.S., HIV/AIDS activists are careful with their language, and we use terms like “living with AIDS,” because that’s what many people here are able to do now — they’re able to live years and even decades longer, and HIV is no longer the immediate death sentence that it was 20 years ago.
But in developing, less-wealthy nations, AIDS still equals death. And those who are infected often can have no illusions about what they face.
They gathered on a recent Saturday in this big port city near Hanoi, 15 women — many of whom had not told their families they were infected — sharing companionship and the relief of laughter from lives of poverty, illness and dread.
In the face of discrimination and in the absence of adequate health care, they are for the most part one another’s only support.
This is a country teetering on the brink of a nationwide epidemic, with more than 250,000 people infected with the virus that causes AIDS and with only 10 percent of those who fall ill receiving the treatment they need, according to Unaids, the United Nations agency.
The country’s health care system is well organized, but the disease has until now been concentrated among intravenous drug users and has not been treated as a priority. Experts say it is beginning to spread quickly into the broader population, and one of the chief barriers to prevention and treatment is the stigma that makes outcasts of those who carry the virus.
This is the problem with treating certain segments of the population as less important, and therefore less deserving of healthcare, then the mainstream. We saw it here when AIDS was considered a “gay disease,” and our fabulous Republican president refused to mention the disease for years. Because it was assumed that only gays were dying, nothing had to be done. It was an epidemic, but one that affected the undesirables — so why intervene?
We see this now in Southeast Asia, as AIDS is considered to be squarely in the realm of drug addicts and prostitutes. The governments ignore it, which futher marginalizes those communities and stigmatizes anyone who gets the disease — and then you have people who consider themselves members of “mainstream society” who are too afraid of the social consequences of admitting their illness. And it spreads.
What the women rarely talk about, except when they are joking, is the near-certainty that in time they, too, will fall ill and that they will be feeding, bathing and consoling one another, and caring for one another’s children, as one by one they die.
“The meaning of the group,” said Nguyen Thi Sau, 29, whose husband has already died from AIDS complications, “is so that when you die you are less lonely.”
One thing that women have always been particularly good at is forming connections and building informal communities with each other. I suppose this is a natural outcome of being traditionally excluded from male-dominated institutions and having so much of your life operate within the private sphere, but it’s something that women world-wide often have in common. The stereotype of the “emotional female” at least allows many of us to express emotions openly and honestly with other women, as we aren’t always expected to fake stoicism and posture the same way that men are. And it allows women to build these kinds of bonds — to take care of each other when they’re sick, to promise to take care of one’s children as she’s dying.
They also care for those who they never knew.
In what they say is a form of therapy, the women have chosen to look directly into the face of the suffering that lies ahead, nursing, cleaning and feeding the sick, collecting the bodies of people who die alone in hospitals or on the streets and attending the funerals of those whose families have turned their backs.
“Some days I have to take care of four people who have died in the hospital,” said Ms. Sau, who worked at a shoe factory until she was fired. A number of the patients, she said, are prisoners who have been sent to the hospital to die, covered in their own filth and still chained to their cots.
“I’m the one who has to close their eyes when they die,” she said. “After that I can’t sleep at night.”
That’s bravery.