With December 1 comes World AIDS Day. The timing of this commemoration of those gone, those still fighting, and our hopes at prevention (and dare-we-hope an end?) to this epidemic always strikes me as curious. For Americans, World AIDS Day comes on the heels of Thanksgiving (and Black Friday) and nearly smack in the middle of our oft consumer-driven, holiday-laden winter season.
Here in America, we don’t feel we have the time to worry about AIDS in the middle of so much festival and celebration. But this begs the question: When would we like to think about AIDS? The answer, in all honesty, is never. We never want to think about AIDS because then we have to think about our choices — in our personal lives, politics, religion, and more — and our culpability. We would rather blame someone else or ignore it completely. For all the fear-mongering and victim-blaming that has gone on during the AIDS epidemic, the thing that frightens us most about the disease is that in reality no one is safe from it.
A child during the 1980s, I am old enough to remember when it was called the “gay-cancer” and known officially as “Gay-related Immune Deficiency,” or simply GRID. While America may have the dubious honor of being the first country in the world to officially recognize the disease in 1981, our very bigoted reaction to it — I can remember segments on the nightly news about whether or not you could get it from public toilet seats or shaking hands — is part of that legacy, too. For generations after mine, there has never been a time without AIDS. But I remember the crossing over into this modern era, and it was ugly. (See: And the Band Played On and Philadelphia) Today the slogan, “Silence equals death,” may seem old-fashioned in a way. But we needed it back then:
For a while the American government completely ignored the emerging AIDS epidemic. In a press briefing at the White House in 1982, a journalist asked a spokesperson for President Reagan “…does the President have any reaction to the announcement – the Center for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases?” The spokesperson responded – “What’s AIDS?”20 To a question about whether the President, or anybody in the White House knew about the epidemic, the spokesperson replied, “I don’t think so”.
A tone-deaf response in an age before the internet and now twitter? Yes. But a telling one, too. In the early days, the disease was so closely linked with gay men that it was shocking when we learned that others got infected and died from AIDS, too. In the 1980s Ryan White — a white kid from Indiana — became nationally known for his legal fight to attend public school after becoming HIV-positive following a blood transfusion. (He died one month before his high school graduation, in 1990.) Because of him, we have the Ryan White Care Act, which is the largest federally funded program for people with HIV/AIDS.
Then came Magic Johnson‘s admission that he was HIV-positive and the cognitive dissonance between myth and reality could be felt across the country:
“Here I am saying that it can happen to anybody, even me, Magic Johnson,” he said at a packed news conference at the Forum in Inglewood, Calif. “I just want to say that I’m going to miss playing, and I will now become a spokesman for the HIV virus.”
Not long after that, news broke that AIDS was the fourth-leading cause of death in American women ages 25-44. It became nearly impossible for us to keep our collective heads buried in the sand — young white boys, black straight athletes, and women were getting this disease (and often dying).
Many in my generation was in high school and college when these things happened and so maybe that’s why we have been so identified with the safe-sex campaigns and pop culture of the 1990s. (See: Let’s Talk About Sex and Waterfalls) Maybe that’s why I feel particularly horrified when news breaks that younger generations are using condoms less.
Indeed, there’s a complacency about HIV/AIDS in America of which other countries do not have the luxury. For instance, according to the United Nations (PDF), in sub-Saharan Africa, women are 59 percent of those living with AIDS and without HIV the worldwide maternal mortality rate would lower by 20 percent. Globally, HIV is the leading cause of death for women.
However, for many young Americans, AIDS is over. Or, maybe it’s just for “other people” (as Magic Johnson put it). Maybe now instead of thinking that the “other” are gay men, the American collective consciousness imagines the other to be women and children in third-world countries. Let Bono worry about them, right? Is this the next phase of America’s legacy with HIV/AIDS? The country to first recognize it is also under a collective delusion to forget it, at all costs.
But we also have plenty of problems here at home. Disturbingly, black and Latino women are disproportionately infected (PDF). One in four new HIV/AIDS cases in America are women but of those two in three are African-American. Poverty and the stigma (and homophobia) surrounding AIDS testing seem to play a large role in this equation. There is hope that the equalizing effect of the Affordable Health Care Act may help remove road blocks to preventative care — like testing and access to safer sex practices. But only time will tell.
And even now in 2012, for the LGBT community, it is almost deja vu all over again. According to Politico, only 27 percent of new HIV cases in 2009 were from heterosexuals. In fact, for the same year 64 percent of new cases were from men who have sex with men:
The demographic groups with the highest numbers of HIV infections were, first, white men having sex with men and then black men having sex with men. Third and fourth were, respectively, Latino men having sex with men and then heterosexual black women.
But, according to the same Politico piece, even as the infection rate in the LGBT community is climbing, the funds used for education and prevention campaigns is going disproportionately to other populations. According to the Center for Disease Control, in 2009 only 27 percent of AIDS education and risk reduction funds went to gay and bisexual men. This disparity is startling considering where we began. How is it possible that in the 30 or so years since we first learned of AIDS, that we are still so quick to marginalize the LGBT community?
The most vulnerable populations, including gay men and transgender women, need to have access to HIV prevention and treatment through the state health insurance exchanges created by the Affordable Care Act. The Medicaid expansion is critical to the ability of low-income lesbian, gay, bisexual and transgender people to access health care — including preventive care.
In all of this, I worry most that we take our eyes off the real prize here — prevention and ultimately a cure. Just because I am a woman, it does not mean that I care only about the women who are infected and living with HIV/AIDS. (Indeed, sometimes I worry that we highlight the women and children with HIV/AIDS precisely because people are more sympathetic to them than LGBT individuals.) I care about all the populations and the unique stigmas that enable our cognitive dissonance about this epidemic. I will not celebrate a reduction in one population’s infection or mortality rates when another population is soaring. If the point of feminism is to push for equality of all genders, then too it must be consumed with the equality of all people who are marginalized
With all this bad news, it can seem hard to find any ray of light. As my pastor said last Sunday, “It is possible to celebrate all we have accomplished when we consider this World AIDS Day.” Part of me finds it hard to believe, but I can see a few rays of light. Obama renewed the Ryan White Act through 2013 and we have our very first HIV/AIDS Strategy was released in 2010. In addition, under the Obama administration, the ban on gay men donating blood has been lifted as well as the ban on HIV-positive immigrants entering our country. My hope is that as we acknowledge the work ahead with strategies and programs and we continue to close the door on the past by eliminating policies that discriminate, we inch closer to the prize.
According to Avert and numbers from the UN, there were approximately 34 million people living with HIV/AIDS in 2010. Half of them are women. More than three million are children. Since the beginning of the epidemic, nearly 30 million have died from the disease.
We owe it to them and to ourselves to continue to fight the spread of this disease, take down health care and quality of life barriers for those who are infected, and to eliminate the prejudices that only serve to help this disease continue to kill.
With many in our nation turning their gaze toward Christmas — a holiday reserved, at least in part, for goodwill toward others — maybe Dec. 1 is exactly the right time to ruminate on HIV/AIDS and celebrate those who’ve died. Maybe that is exactly what we need to sober us in a time that can be taken over with materialism and empty gestures. After all, there are 34 million people counting on us to wake up and do the right thing.
What better time than now?
Cross-posted on Fem2.0.