White Girls Don't Get AIDS

In 1998, the most common cause of AIDS among women was heterosexual exposure to HIV, followed by the use of injection drugs. A large percentage of women who became infected heterosexually did so through sexual contact with injection-drug users. For this reason, reducing the HIV infection rate among women will require combating substance abuse as well as reducing HIV risk behaviors.

-- HIV Frontline, Issue 40, July/August 2000

Last time I checked, the Centers for Disease Control estimated that there were between 120,000 and 160,000 women and adolescent girls in the United States living with HIV infection, including those who already had an AIDS diagnosis. From 1985 to 1998, the proportion of reported AIDS cases in women and adolescent girls rose from 7% to 23%. 77% of these reported AIDS cases are in African American and Latina women and girls, who account for less than 25% of the U.S. female population.

These figures are unacceptable. But what is also unacceptable are the numbers that are missing -- namely the other 75% of the female population, who I'll wager aren't doing so well either, but don't know it yet. Remember: if you don't get tested, you don't know you have HIV. If you don't think you can get HIV, you don't get tested. Counties with low numbers of actual diagnosed AIDS cases are not necessarily counties with low rates of HIV infection -- they're just counties that have fewer reasons for pulling their heads out of the sand.

Given the state of health in sub-Saharan Africa, Southeast Asia, and U.S. minority communities, I'm not expecting anyone to open a vein and bleed for the plight of white suburbia (though I do think more blood, and certainly more money, should be shed for Americans of all ages and races living in economically-depressed rural areas). Money alone will not change the high level of denial that saturates suburban and small-town culture. It won't stop the emphasis on keeping up "respectable appearances," to not behave like "trash," that prevents open communication and dissemination of much-needed educational materials. Some outer-city people may have more financial resources at their disposal, but that doesn't mean they're pouring it into HIV/AIDS prevention and health services; it certainly doesn't mean they're any less mired in the cultural propaganda that continuously reinforces the notion that HIV/AIDS is something that happens to "other people."

Let me illustrate with a story:

In 1994, I left the Twin Cities -- one of the nation's bastions of liberal niceness, with state-sponsored health coverage, an excellent network of community clinics, and one of the highest literacy rates in the United States. I left for a lot of reasons, but a big one was the need to get away from a drug scene that was rapidly consuming way too many of my peers. I'd moved there from Sioux Falls, South Dakota in 1988, and started doing sexual health activism in 1990. From then until the time I left, my social group consisted largely of people like me: middle-class or rural working-class young folk with at least a high-school diploma and the opportunity to go to college; people between the ages of 15 and 27 who had come to Minneapolis and St. Paul from midwestern suburbs, small towns and farms. We weren't all white, but those of us who were not were often uncomfortably "white-identified" -- Koreans and Vietnamese adopted as children by white parents, black youth who had grown up in mostly-white towns, and others of mixed ethnicities who felt excluded by their racial communities. Injection drugs -- primarily heroin, but also methamphetamine and cocaine -- were all the rage at the time, and while the "scene" definitely supported such self-destructive activities, drug use in general was new to only a few of us. People looking for an escape valve without leaving their neighborhood will choose the same options in outer-city areas as they will in the inner city. My friends got high a lot in the late '80s and first half of the '90s, more and more often via the needle.

Oh yeah -- we had sex a lot, too. That was easy, and our crowd was right-on with same-sex experiences as well. Not that most of us waited on that before we got to the Big City either. For example, there was a very popular telephone pole in downtown Sioux Falls where the interstate truckers and other men of any age could post their sexual-partner requests, complete with meeting times and places. Less sophisticated than the options in larger cities, true; but my male friends who knew they were queer didn't have to wait until they were 18 and living elsewhere, and most of them didn't. Neither did us breeder kids, as the teen pregnancy rate did show.

How many HIV/AIDS outreach programs do you think were targeting small-town women between the ages of 15 and 27 in the early 1990s? Mainstream America had only decided to worry about AIDS in 1985 -- do you think we heard about HIV in "family life" class in places like Preston, Iowa and Allouez, Michigan? In particular, how many I.V. drug intervention programs do think targeted that demographic at that time?

How many are targeting them today?

In 1988, I graduated from high school. In 1990, the city of Sioux Falls finally overcame community opposition long enough to build a Planned Parenthood. Positively Aware got started the same year residents of the largest city in South Dakota gained access to birth control methods from somewhere other than their family doctor's prescription pad.

Need I say more?

Even though most people nowadays acknowledge that women of all ages and backgrounds have sex, there's still a lot of ignorance surrounding the high level of I.V. drug use among women in general, and among certain women's partners. This was certainly true of my demographic, even though many of us -- or the people we dated -- were in bands where the popular look was pale, lanky, androgynous and sleepy. Boys and girls so bony you wanted to drag them offstage and feed them nourishing soups, if they could stay awake long enough to eat them. My own long-term boyfriend was in one of those bands, though they were definitely more healthy-looking than most of their colleagues. He was also a bartender in one of the most popular music venues in town, with constant access to all the perks of said job: women, men, drugs, totally justifiable reasons for rolling home in the wee morning hours long after I'd gone to bed, etc. We'd been together so long that we didn't use condoms anymore.

My gut rolls over when I think of how much trust I placed in him -- trust that fortunately was merited (either that or he really read all those outreach pamphlets I kept stacked in his storage cabinet). Many, many women I know weren't that lucky.

Women weren't lucky in other ways, too. Our gay friends knew and believed that safe sex was hot sex (they'd seen that unsafe sex could leave you permanently cold), but in the early '90s you didn't even hear much about women and AIDS. If you did, the women you heard about were generally "drug addicts," "homeless," or "prostitutes" -- which we were not, since A.) we only used drugs sometimes, and B.) we just had sex with the friends and friends-of-friends who let us sleep on their couches and eat their food when we were between jobs or too young to get an apartment. We didn't do it for actual money; we weren't hookers or anything. Anyway, we weren't going to get AIDS because we came from towns, farm counties, and suburbs, not big places like New York City. Oh, we knew we could get it -- in theory. But it didn't really sink in for a lot of us. And my girlfriends were no more skilled than any other young women in negotiating condom use with partners, despite our high literacy rate and liberal politics. We could easily get our hands on a copy of "Our Bodies, Ourselves" -- and that access to information is, unfortunately, still a privilege -- but that alone didn't mean we were empowered enough to put what we read into practice. I personally saw all too many of my friends and acquaintances use and abuse the Unclean Way, and based on the number of times I supported women friends during home pregnancy tests and gave STD tutorials and referrals to the area's excellent low-cost clinics, I can say quite honestly that there was safer-sex trouble in our own little River City.

But most of us were, you know, white. And everyone knows white girls don't get HIV.

We were morons, is what we were. But we didn't have too many people telling us otherwise -- just like women today. In fact, a lot of healthcare providers are more than happy to reinforce these stereotypes for us. I know plenty of young women who have been told by their doctor, gynecologist, or pre-natal care provider that they're "not at risk" for HIV, as though because they're white women who've had a few college-level courses they do nothing in the sack but discuss "Beowulf" with their always-monogamous, always-hetero, always-straight-edge lover (note the singular form: "nice" girls may have sex now, but we still never have more than one partner at a time. We never do drugs either, and we certainly never shoot up or let our boyfriends shoot us up with communal syringes at after-hours parties. But you knew that already). I know plenty of young women who "confessed" to fictitious high-risk activities during pre-test counseling because they'd been denied HIV tests so often that they knew lying was the fastest -- and sometimes only -- way to get one. From what I hear, this is still as true in 2000 as it was in 1990. People from my background are always more than happy to believe that the people they think are the least like them are definitely at risk for all sorts of things, including HIV and AIDS. When I visited my mother's family in downstate Illinois this summer, for example, they were so pleased to hear that I'm doing "good work" for the "underserved" in the big city. They'd never heard of the state STD and HIV hotline I work for, nor apparently did they consider southern Illinois "underserved," even though any of them would have had to travel two counties over to get services if they were HIV positive, or even had an embarrassing infection.

As a friend of mine said recently, "If 50% of youth live in large cities, where do you think the other 50% live?" I can tell you this: they do not live in places that provide them with the health information and services they need, especially when it comes to HIV.

It's true that many outer-city kids lead comparatively more privileged lives than most inner city youth (though not all do, especially youth from rural boom-and-bust economic regions). Unfortunately, their "privileges" also include ignorance and isolation, along with hefty doses of culturally-endorsed denial.

The risk factors my friends and I engaged in 10 years ago haven't dissipated; if anything, they've increased. What hasn't increased during that time are services for non-city people with HIV/AIDS, or prevention services for the next generation of rural and near rural kids. There's no needle exchange in Decatur, Illinois. There's no young-injectors HIV/AIDS awareness campaign in Clancy, Montana (heck, there's none in Chicago, either). And now that we all know abstinence-only sex-ed programs are the greatest things since sliced bread and we can rest assured that all America's youth won't even think about having sex until their mutually heterosexual life-long monogamous marriages take place, there's really no need to even talk about these "issues" anymore, is there?

No, they'll just do what everyone before them has done: become infected, and then infect others before they get into rehab or fall sick and find out why. Because everyone knows AIDS only happens to gay men. Or inner city Black and Latino women. Or those "backwards" people in Africa and Thailand. Or anywhere else but "here."

I'm not in touch with most of my old crowd anymore. Most of them are on the West Coast now -- Seattle, Portland, San Francisco -- and hopefully they're doing better out there than they were the last time I saw them. The ones I know of from the grapevine have mostly gone through rehab or overdosed; there are quite a few successful rehab stories, which is a great blessing. The one good friend I still know from that time tested negative for HIV, though she lost most of her cervix to aggressive treatment for early cervical cancer at the age of 31 (we didn't hear much about HPV or other STDs either). The old "scene" seems to have quieted down as well, or maybe it just migrated west with a lot of the scenesters.

Or maybe I'm just out of the loop now, and it's the same as it was a decade ago.

Because I don't know where they are, I don't honestly know how many of the Old Crowd came up HIV positive. Maybe the numbers are as small as we're led to believe. Maybe there weren't enough of us infected at that time to spread HIV within our circle of friends. Maybe our communities were more insulated than we thought, or more of us adapted our behavior before things got really bad. Maybe we did get lucky. If not, those of us who never felt the need to test should start figuring that out any day now, given that 8-to-10-year incubation period. All I can say is we were definitely "high-risk," despite our age, race, gender and background.

We were so much like women and girls today, coming from the same backgrounds, the same suburbs and small towns, and the same experiences.

Again: Need I say more?