08/31/2012 07:10 pm ET Updated Oct 31, 2012

A Pregnant Legacy

Instead of planning her daughter's high school graduation, she was planning her own funeral. Her name was Chamalla. She was 32 years old, and she was dying of AIDS.

AIDS has become one of the top killers of black women in their childbearing years, particularly in the American South. This grim statistic led me to South Carolina; and, there, I found a family that has several family members living with HIV. They developed the disease in a variety of ways: from being born with it, to having unprotected sex, to intravenous drug use.

While most of the money spent to battle the AIDS pandemic goes abroad or gets spent in urban areas, little attention has focused on women in out of the way places like Bamberg and Barnwell Counties in South Carolina. South Carolina leads the nation for heterosexual transmission of the disease. Rural counties form the epicenter in new HIV transmissions. Most of those now living with the disease are in their twenties, which means they contracted the virus as teenagers, in a state that stresses "abstinence-only" education. That's a legacy of a prison system that locks young men away but avoids educating about safe sex, preaches abstinence over condom distribution, and which criminalizes the disease -- if you have HIV and you do not tell your partner, you can go to prison in South Carolina.

When I met Chamalla at the funeral of another relative who had also died of AIDS, I had one question on my mind: why these strong, take no bullshit black women seemed unable to negotiate condom use with their partners.

She looked like a skeleton: her thin, close-cropped hair crowning a still-young face, her almond eyes protruding behind glasses that had been designed when she had more weight. She sat in a wheelchair, at some distance from the rest of the family. She told me that she had been infected back when she was 17, by the 35-year-old father of her first child. She was on Medicaid, but working with her doctors to adjust the drug cocktail that would keep her alive had proved onerous. Antiretrovirals, the drugs that keep AIDS patients alive, have serious side effects, among them bloating, dizziness, nausea, and disorientation.

"I just don't want to live like this," she said, and told me that she had finally stopped taking her meds and was "just waiting" for the disease to run its course. Her mother stood by her side. I turned from Chamalla to ask her how she could just stand by and watch her daughter commit slow suicide.

"It's her decision," responded in a flat voice. Then, she added something that made my heart drop. She told me that her daughter's father was also her uncle. In other words, Chamalla was the child of incest.

But when Chamalla's mother told her family about the rape, her mother said she had brought it on herself.

Rep. Todd Akin might say it wasn't a "legitmate rape." But whatever you call it, Chamalla's mom was clear about the consequences. She had been depressed for years; and her daughter ran away from home when she learned the truth. Chamalla ended up living with a 35-year-old man who fathered her child -- and gave her AIDS.

"If you're not willing to talk about incest," Chamalla's mother said, "you're never going to get to the real problem with HIV."

After I heard Chamella's story, I went back to other women whose lives I've been following as part of my documentary, mostly advocates working to educate others about HIV prevention. They paused, nodded, then seemed relieved to unburden themselves. An uncle. An older brother. A father. A family friend. Their boyfriends. Raped as children, very often raped again as young women. No wonder they can't negotiate anything behind closed doors. They have been taught that when it comes to sex, there is no negotiation. Here was the answer to my question about why black women couldn't negotiate safe sex.

My heart aches, and I seethe with an underlying rage. Black women are by no means the only victims of incest and rape -- in fact we are only slightly more likely than white women to experience sexual assault. According to the Rape, Abuse, and Incest National Network (RAIIN) 52 percent of male rapists are white. But nearly half of all victims are under 18.

For these women, recovery may never arrive. Women who survive sexual assault are more than 26 times more likely to turn to drugs; 13 times more likely to abuse alcohol. That makes them even less likely to demand that their partners practice safe sex.

It is a legacy of pain and pregnancy that travels from generation to generation; and increasingly, a death sentence. AIDS has become one of the top killers of black women in their childbearing years.

Chamalla had already planned her funeral when I met her. She died two weeks later.

It would not take a lot to help women like her who find themselves isolated by their families: a coordinated medical response; a prevention program; a support network; a feeling that a community cared. But that doesn't seem to be happening. Instead, shame, blame, and a politicized conversation about health care costs buries them out of sight.