The disease of “isms”

(NOTE: This post is in honor of my friend Matt, who is doing the AIDS LifeCycle ride this week from San Francisco to Los Angeles.)

June 17, 1982. Tom Brokaw began his NBC News report with the following statement: “The lifestyle of some male homosexuals has triggered an outbreak of a new form of cancer.” The report went on to describe two men who “suffer from a mysterious, newly-discovered disease, which affects mostly homosexual men.” It was a disease with no name, yet its deadliness was undeniable: “Researchers know of 413 people who have contracted the condition in the past year. One-third of them have died. None of them have been cured.”

I was ten years old at the time. I actually remember watching this segment. I also remember feeling scared. There’s this disease that doesn’t have a name, and nobody seems to know how you get it. But it can kill you. Anyone would be frightened by that prospect.

Understandably, many people were. Very quickly, a mass panic erupted – largely because people didn’t know how this mysterious disease was transmitted. The media initially referred to the syndrome as GRID – gay-related immune deficiency, assuming that it was a disease concentrated solely among gay males. The CDC originally called it the “4-H” disease, based on the assumption that it affected homosexuals, hard-drug users, hemophiliacs, and Haitians. Both of these terms, marginalizing and othering as they were, were probably intended to quell the fears of the general public (“As long as you’re not in one of those groups, you should be just fine.”). A month after Tom Brokaw’s news report, a Time magazine article introduced the term “AIDS” for the first time, which is the acronym that has come to embody the effects of oppression on the LGBTQ community. An epidemic was born.

The devastating effects of the AIDS virus are well-documented. So is the government’s apathetic response to the epidemic, and the activist efforts that arose from that apathy. Read And the Band Played On by Randy Shilts – and then watch David France’s award-winning documentary How to Survive a Plague. Entire communities were dying off, and it seemed as if nobody cared. The edge communities of the day – homosexuals and drug addicts – were being completely ignored.

Thirty-one years later, and the impact of HIV and AIDS is still devastating. According to the Center for Disease Control, there are over 1 million people with AIDS (PWAs) currently living in the United States. Fifty thousand people are infected every year with HIV. And about 15,000 PWAs die each year. Of course, more people with HIV and AIDS are living longer, healthier lives, since the development of protease inhibitors and antiretrovirals. But today, we’re facing the long-range effects of the ignorance and apathy of the 1980s and early 1990s. We’re in what Carlos del Rio of the Emory University School of Medicine calls the “second wave of AIDS” – and that wave is continuing to most strongly impact people who exist on the edges of the mainstream.

Which edge communities are we talking about? For my upcoming book, I interviewed Aaron Riley, president of New Leaf Columbus, a social and professional networking group for queer people of color. “When I was doing HIV work,” said Aaron, who is HIV-positive, “we would see Black men coming into the system, progressing within 1-2 years to an AIDS diagnosis, and within another 24 months they typically were dead. We had White males who were in the system for 20, 25 years. Why are we having such different mortality rates?”

Why, indeed? “People weren’t getting tested. By the time they came in, their immune systems were so far compromised, and the virus was so far along, that there really wasn’t a lot that could be done.” Aaron paused. “I’ve watched the community respond to AIDS, or not respond to AIDS, for a really long time. The African-American church has to resolve how it’s going to deal with this issue. The church won’t talk about the issue, and in the meantime, people continue to get infected, and people continue to die.”

Kyle House, former president of the now-defunct Sacramento Valley Leathercorps, became infected with HIV in the early 1990s through an accidental prick from his partner’s medical syringe. Kyle, whose birthright includes Dutch, English, Iroquois, and Seminole lineage, had this to say: “The rates of HIV in some Indian nations are incredibly high. Astronomically high. But they don’t report. They don’t trust the government. And I don’t blame them. Plus there’s a huge stigma in the community for being gay, and for being positive. That silences people.”

People of color, particularly African-Americans, Latinos, and Native Americans, are disproportionately more likely to get infected with HIV – and are significantly more likely than White people to die from complications arising from AIDS. But that’s just the tip of the iceberg. According to the CDC, risk factors for HIV infection include the following:

  • poverty
  • homelessness
  • disability
  • low education
  • being a gay or bisexual male
  • being female
  • being young
  • being transgender
  • being incarcerated.

“This disease is climbing in women, people of color, people of lower economics,” said Aaron. “Disenfranchised people are the ones being affected.”

In 2006, NPR aired a report titled, “The Changing Face of AIDS: 25 Years Later.” The Gay Men’s Health Center has a page on its website titled The New Face of HIV/AIDS. ThinkProgress has an interactive map on its site titled The Changing Face of AIDS. “There’s a phrase I’ve been hearing more and more: ‘The Changing Face of AIDS,'” said Marc Thibodeau, an International Mr. Leather titleholder who in 1992 learned he was HIV-positive. “I hate that phrase. The face of AIDS isn’t changing. What’s happening is that AIDS is spreading. It’s spreading into more and more communities.” Marginalized communities. Oppressed communities. Disenfranchised communities. The communities that are impacted by the wide-ranging constellation of “isms.”

In 1982, we were faced with a new form of cancer. Today, that cancer has metastasized – and even in the post-ACT-UP era, we still see fear, apathy, and silence within affected communities. We see young people who think, Oh, if I get it, I’ll just take a pill.  We see people of color who are afraid to get tested for fear of outing themselves. We see religious communities that have remained silent about the presence of the disease within their congregations. We see people who get infected because they were the victims of sexual assault – and who know they’ll be stigmatized if they come forward. We see people who, even in 2013, don’t have accurate information about how to protect themselves and others from the virus.

AIDS is a disease that thrives on “isms” – racism, sexism, genderism, heterosexism, classism, ableism, ageism. If we’re going to win the war on AIDS, we need to eliminate the conditions that enable it to survive and thrive.


Filed under bisexuality, disability, health, HIV/AIDS, homophobia, intersectionality, racism, religion, sexism, transgender, transphobia

2 responses to “The disease of “isms”

  1. Thank you, Gayle.

    Randy Schilts indicted not only government but also the gay male community and the blood banks for weak or tardy responses to the epidemic. Lots of blame to for so many of us to share. And, of course, there were heroes who stepped up in response, among them many in the medical and lesbian communities.

    I think it woild be helpful to round off a post like this one with AIDS prevention, diagnosis, and treatment references, for those who for whatever reason don’t have them and may need them. I’d be interested in the ones you (or readers) think are especially useful.

    – Keith

    • Thanks for the suggestion, Keith! UCSF has a database and listing of HIV/AIDS service providers, which is helpful since most HIV/AIDS resources tend to be locally based. The link is

      Somehow we’re going to have to find a way to bring these resources to the edge communities that are most impacted by HIV/AIDS, because those communities aren’t being reached adequately. Aaron Riley made a good point when he said that the churches are going to have to start dealing with this issue in a more proactive way. Years ago, when I traveled to South Africa, I visited one of the black churches in Khayelitsha, a township outside of Cape Town. Inside the church, there was an AIDS awareness banner with a red ribbon. In Soweto, there was a mural painted on the side of an elementary school that featured the AIDS red ribbon. I think we need to see more of that in the United States – shifting the focus from the gay community and reaching out to other communities that are being affected by the disease.

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