"We may be standing on the verge of a major drop in new HIV infections—the first since 1990. This begs the question: Who are we without the AIDS crisis? Even if all new infections stopped today, AIDS would be a constant throughout our lifetime. But the crisis—the cavalcade of deaths and new infections that has for so long seemed unstoppable—can be ended."Read More
The statistics are upsetting and well known. Despite an encouraging recent drop in transmission rates, black women still represent two-thirds of all new HIV infections among women. In fact, they are 20 times more likely to seroconvert than white women—a greater level of disparity than ever before. The cavalcade of AIDS anniversaries over the last few years has spawned a corresponding interest in producing museum exhibits, documentaries, and feature films about the early years of the crisis. But with a few notable exceptions (Frontline’s “Endgame: AIDS In Black America;” Precious; Tyler Perry’s despicable Temptation), there has been no similar rush to tell the stories of the (black, female) face of the modern epidemic.
Hannelore Williams, filmmaker, actor, and creator of the new docu-series “Dirty 30,” is hoping to change that.
“My target demographic are the people who watch ‘Basketball Wives’,” Williams says with a laugh, which I’ve learned means she’s about to say something darkly honest. “Or let’s just be real—people who don’t want to talk about HIV.”
Like the hundred or so people around the globe that Williams has interviewed, I find it easy to talk to her about HIV/AIDS. She’s relaxed, cool, confident, and quick to laugh about difficult things. Indeed, she ends every interview for “Dirty 30” by asking her subjects to “tell their favorite AIDS joke.”
As with many working on the epidemic, Williams has a personal connection to the crisis: her sister’s father passed away due to AIDS-related complications. But it wasn’t until years later, when she was preparing to volunteer at Nkosi’s Haven, a center for destitute HIV-positive mothers, children and AIDS orphans in Johannesburg, South Africa, that that connection hit home. “How am I flying across the globe,” she found herself wondering, “and I didn’t even go across the country to be with my sister” when her father died?
Williams was in South Africa to do arts education with children, but the women of Nkosi’s Haven were so similar to women she had known her whole life that she was drawn to work with them as well. She taught them to use her camera and let them turn the lens on their own lives. In so doing, she became hyperaware of all the ways in which black women—in the U.S. and around the world—were lacking opportunities to talk about AIDS. Quickly it became an obsession.
“It was a hurricane coming at me from the far west,” Williams says with a distant look in her eyes, discussing that feeling. “Once you start to look at this pandemic there's no way you would ever turn your back.”
There was just one problem: At the time, Williams didn’t know much about HIV. She realized, however, that the journey to knowledge was the story she had to tell. So she put her life on hold, borrowed two cameras, and spent six months traveling the world gathering footage. “I'm learning about this from the standpoint that most Americans are,” she says, “which is not knowing, or sort of knowing, but easily sweeping it under the rug.”
Far from being limiting, this acknowledgement allowed her to make a series that speaks directly to the epidemic as it is today. In “Dirty 30,” there are no ponderous attempts to chart the entire history of the crisis in order to set the scene. Instead, AIDS is treated simply as a fact of life—something we all know about, even if we don’t talk about it. And from New York to Baton Rouge, from Cape Town to Paris, Williams’ goal is to get people talking.
“It's not Hanne telling you jack shit about anything!” she laughs, when I ask if she’s worried about the responsibility that comes with approaching such a fraught issue from a place of relative ignorance. “I’m creating a platform for somebody else to talk.”
And that platform is, in a word, slick. Stylistically, “Dirty 30” feels more akin to a music video than a typical AIDS documentary, with beautiful shots of foreign cities, quick-cut motion graphics, and “featured artists” whose R&B tracks provide the backbeat to the show. Currently, Williams is meeting with commercial brands that might want to underwrite the series, and networks and other media platforms that might give it a home. She’s planned 16 episodes, with topics like “Monogamy & Sexual Healing,” and “Drugs & Escapism.”
“There are sexy issues tied to this pandemic,” she says unapologetically. By exploring them, she hopes to attract a young audience that doesn’t often tune in for stodgy healthcare PSAs—and therefore might need them most.
Williams acknowledges that aspects of the series might seem triggering at first, like using the word dirty in the title. But she says her choices have been informed by her subjects, and that she’s backed away from topics—like AIDS conspiracy theories—that her interviews led her to believe wouldn’t further a real conversation about the crisis. Still, she’s not afraid to talk about difficult issues. “If you try to talk about stigma and don’t actually put it out there,” she says, “what are we talking about? Bullshit. Lies.”
Although the show looks at the crisis through the lens of black womanhood, Williams is adamant about including diverse subjects and experiences in her frame. To her, it’s simple: “You can't talk about black women in the context of AIDS without talking about everybody else at the same time.” AIDS, which was once considered a niche disease, is now as much a part of the fabric of our lives as cotton.
At the moment, “Dirty 30” is in production, but even now Williams can’t stop. While I’m interviewing her, she’s setting up an additional shoot in Toronto. She doesn’t know yet where the show will end up, but she’s certain it will find a home, and she’s already begun planning more episodes.
“Not even one season of a show,” she says, shaking her head with a mixture of sadness and reflection, “could address all of the issues tied to this pandemic.”
This Dec. 1, as we mark yet another World AIDS Day without a cure, a vaccine, or an intelligently interdependent global response to the crisis, I’d like to propose a thought experiment based on a radical—yet commonsense—proposition: We can end AIDS without a cure for AIDS.
After all, we have learned ways to prevent transmission between mother and child, discovered drugs that bring the viral load down to undetectable levels, and placed a critical understanding of sexual health in the hands of (some of) those who need it most. With proper funding and political will, these advantages can be replicated in every population, in every country, in every corner of the globe. Incurable is not unbeatable—as we already know from polio and smallpox.
So why haven’t we beaten AIDS? Clearly, it’s not because we don’t need to. In the United States alone, an estimated 1.2 million people are living with HIV. Globally, it’s around 35.3 million people. For one reason or another—because they are black or brown, gay or transgender, drug users or sex workers, and overwhelmingly because they are poor and disenfranchised—the life-or-death needs of these people do not dictate global policy or move world markets. Because AIDS has from its very beginning been a disease of the marginalized, we have allowed it to spread like a weed through the cracks in our society. Inaction, more than transmission, is at issue here. HIV causes AIDS, yes, but the AIDS crisis is caused by stigma, oppression, discrimination, and apathy. The virus is not our biggest enemy—we are.
And here, the thought experiment begins.
Currently, the popular understanding of HIV/AIDS is that it is a disease that affects certain “high-risk groups”: gay men, for instance, or black women. To be sure, rates of infection among these groups are disproportionately high, as any number of depressing statistics show. According to recent figures from the Centers for Disease Control, approximately 30,000 men who have sex with men (MSMs) contracted HIV in 2010—up a significant 12 percent from 2008. While infection rates among black women seem to have fallen recently, they are still 20 times higher than those of white women. Such strong correlations between racial or sexual identities and infection rates suggest that this model is informative, that it is an accurate way to understand the AIDS crisis.
But these statistics conceal as much as they seem to reveal. In three distinct ways, the “risk group” approach to conceptualizing HIV actually impedes efforts to end the crisis. First, it pathologizes all people within a broad category, regardless of their actual sero-status or real likelihood of contracting HIV. Under this simplistic rubric, all gay men or black women or injection drug users are treated as likely sources of infection.
Second, this approach diminishes our ability to properly understand and target the real vectors for the disease by hiding them inside nearly useless categories. After all, there is nothing inherent to being a black woman that makes one more likely to contract HIV. It is the social position of black womanhood in our society that puts these women at risk, not their identities.
Third, by leading us to believe that these broad groupings have some causal relationship to HIV infection, this model limits our understanding of the crisis to our local context. Because we are actually dealing with correlation, not causation, these groupings do not have the same relationship to HIV in other places. Efforts to work globally—or even in different communities in America—will always be hampered by our own preconceived notions of who is and is not at risk.
But what if we flipped the lens? What if we focused more on marginalization (and its real-world effects) and less on identities? What if we understood AIDS not as a disease affecting certain types of people, but rather, as a disease that affects those living at the intersection of a constellation of conditions, such as poverty, lack of access to education, inadequate health care, stigmatized sexual practices, drug and alcohol abuse (legal or illegal), and political disenfranchisement?
This would not only reduce the stigmatization of identity groups with high rates of HIV infection, it would also allow us to tailor our health remedies to those who really are most at-risk. For example, in a further breakdown of that statistic regarding rates of infection among MSMs, the CDC notes that the numbers of new infections among white and black MSMs were almost identical—despite the fact that non-Latino whites represent 63 percent of the U.S. population and blacks only 12 percent. Additionally, the greatest number of infections was seen in the youngest age group. Again and again, it is those who sit at the intersection of marginalized identities—those with the least social capital and political agency—who are most at risk. We must discard generic categorical bromides in favor of health remedies targeted to their specific needs.
Further, this way of understanding the crisis would turn our attention away from prevention models based solely on behavioral change, which studies have shown are often difficult to enact in real life. Though it is tempting to isolate a single action or inaction that could stem the tide of infection, in truth, we are complex social animals whose behaviors arise from our specific circumstances and experiences. Thus, without broader contextual shifts, our actions tend to be change resistant.
For example, behavioral models routinely admonish young women with little education, no access to health care, and a cultural lack of sexual agency to make difficult decisions in highly sexual situations. In an (oversimplified) metaphor, it’s like telling someone to use a condom every time they have sex—without considering where they will get the condom, who their partners are, how they will negotiate safer sex acts, what the word sex means to them, and so on. A more successful (and, to be blunt, fair) approach would be to ensure that these women are empowered to enter these situations with adequate support, knowledge, and decision-making agency—things marginalized groups often lack. This requires HIV prevention efforts that also work to create political power for marginalized groups; address issues of poverty and social justice; help individuals find or prepare for meaningful employment, housing, and health care; address mental health issues—efforts, in effect, that address a client’s life circumstances as a whole. Many, many on-the-ground service providers already work in this kind of model. But this is a long and slow process, which requires support from an informed populace and a government that sees the vital connection between civil rights, community empowerment, and HIV/AIDS.
By focusing on marginalization, not identity or behavior, we could begin to address the root causes of inequality that leave certain members of our society more at risk for experiencing any negative life or health outcome, AIDS included.
If we can stop AIDS and have chosen not to, the hard truth is that it is because certain lives don’t seem worth saving: They would cost too much, or have brought it upon themselves, or aren’t our concern, or don’t even exist in our worldview. And this is what needs to change. Until we see every life as equal, we will never end AIDS.
I was invited to be part of a discussion about the role of men in the abortion debate on HuffPost Live. Watch the full segment below.
<a href="http://live.huffingtonpost.com/r/segment/should-we-engage-men-in-reproductive-rights/51e720472b8c2a354600019e"><em>Originally aired on HuffPost Live on July 22, 2013.
When I was 12 years old, I developed superpowers. I went to bed a normal middle-schooler and awoke to find my senses heightened. My alarm clock sounded like a siren, the sun burned my eyes, and my cereal milk tasted like a cereal milkshake. I could smell the furnace in the basement. Like many ’tween boys, I was a comic book junkie, and thus understood what was happening: I’d transcended humanity and was about to join a loveable gang of mutant heroes who risked their lives fighting evil. Since my other option was the seventh grade, this sounded great.
Sadly, an hour later I found myself crying in an armchair as my first migraine moved out of its aura phase and into what is succinctly (and accurately) known as the pain phase.
It felt like someone took a finger and was pressing it onto my skull. Behind my left eye, my migraine throbbed like a second heart. This one-sided pain is the most common of migraine symptoms, and it gives them their name, which comes from the Greek hemi, meaning “half,” and kranion, meaning “skull.” Hemikranion. (If I’d really been a superhero, Hemikranion would have been the name of my home planet.) But my superpowers were simply side effects: photophobia (sensitivity to light), and phonophobia (sensitivity to sound).
In a way migraineurs are like mutants—or snowflakes: No two are alike. Some of us don’t have the aura phase. Others see bursts of light when we have an episode. A few experience facial numbness. Once, my friend went blind for a day—a particularly terrifying experience because it was a migraine without pain, and it took doctors hours to figure out what was happening. Synesthesia, nausea, vertigo, phantom smells, tingling in the extremities; migraines can produce a stunning variety of symptoms, and last anywhere from a few hours to a few days.
This is part of the reason it’s been so hard to find their cause. Some studies have pointed to constricted blood vessels as the prime mover. Arteries in the brain spasm, cutting off blood flow in the occipital lobe, which houses the visual cortex, creating the hallucinations I experience. When blood flow rebounds, vessels in the scalp dilate and leak. As each heartbeat forces more blood out, nerve cells interpret this leakage as throbbing waves of pain—which is why I felt like I had a second heart inside my head.
Other studies point to a phenomenon known as cortical spreading depression (CSD) as the main cause of migraines. During a CSD attack, neurons hyperactivate in a slowly spreading wave, like the domino theory of Communism. In its wake, this wave leaves exhausted cells depleted of potassium ions, and neural functioning slows or halts. This in turn triggers swelling, inflammation, and a lack of oxygen in the brain—similar to what happens during a stroke.
But the evidence is conflicting, and suggests multiple causes—chemical, physical, situational—interacting to create this mother of all headaches. Recent studies have even pointed to genetic factors, so my dreams of mutanthood were not that far-fetched.
Regardless of the cause, however, about one in 10 people worldwide will have a migraine at some point in their lives. These days, I get one or two a year. In college, when I was permanently stressed, dehydrated and exhausted (all conditions thought to trigger migraines), it was more on the order of one every two months. Most times, I shuttered the windows and dragged myself to bed, to emerge a day later feeling raw, as though my first two layers of skin had been burned away.
Worse were the days I wasn’t home. During one particularly bad episode, I couldn’t walk the last quarter mile to my apartment. Each step sent a blistering wave of pain through my skull, and I was forced to lie beneath a tree on the college quad until the attack subsided—about eight hours.
Yet despite it all, I’m thankful for my migraines. No, I’m not a masochist, but that extraordinary first hour of supersenses kindled in me a visceral understanding of the potential of the human brain. Now I know firsthand that our brains and bodies are capable of things beyond our current understanding or control.
It is a beautiful thing to know that somewhere deep inside you have a reserve of untapped potential. It took a young lover of science fiction and made him a lover of science, which I think of as the study of daily miracles. Who needs to be a mutant? I’ll take humanity, and all that comes with it—seventh grade, splitting headaches, and the vast and exciting treasures locked inside my skull.