This year's backlash against PWAs is a direct result of the fact that we're no longer dying on schedule
Taking stock of 1998 is sobering, to say the least. I think it’s likely that history will record this year as a turning point in the epidemic, when the drive to subjugate people with HIV—by denying us the rights that the HIV negative take for granted—reached critical mass. Paranoid? Consider this. Over a decade ago, I wrote fund-raising letters for AIDS and gay groups that warned of grave threats to HIVers’ civil liberties on the horizon: Travel and job restrictions. Denial of health care and insurance. Name reporting and partner notification. Criminal prosecution for having unsafe sex. Quarantine. Many in the community understood the threat on a visceral level, without really believing things could ever get so bad. Back then, those of us sounding the alarm were accused of being hyperbolic—and yes, paranoid.
The determination of PWAs and activists prevented such policies, but only temporarily. For today, even more repressive measures are just around the corner. And this time, there’s little public outcry and too-little fundraising or advocacy in opposition. Many community leaders have caved in—or “recognized the political realities,” as they describe their abandonment of such once-non-negotiable issues as name reporting. Outrage has yielded to burnout, complacency and worse.
The fact is, people with HIV have fewer and fewer friends. Many AIDS, gay and activist institutions that we have long entrusted with our lives are no longer significant factors in fighting against these repressive measures. Most AIDS organizations, facing both private- and public-sector funding cutbacks, are overwhelmed by merely providing direct services to those in need. Gay groups have, for the most part, moved on to gay marriage and other issues to which their donors are more responsive. With the exception of a bright spot or two—for example, treatment and needle-exchange advocacy—AIDS activism is dead, literally and figuratively. And those we distrusted from the beginning—most politicians and “traditional-model” public health officials—have proved our fears justified as they propose, support or fail to stop the new tidal wave of repression against HIVers.
Call it a backlash. We can no longer travel freely. We’re denied many job opportunities, including service in the military, state department and Job Corps. To get health care—even to get tested for HIV—we must have our name put on a statewide list. True, Congress begrudged us the Americans With Disabilities Act, and the courts have steadily chipped away at even these limited protections.
Like dominoes falling, one state legislature after another is enacting—and, increasingly, enforcing—laws that criminalize not only HIV transmission but HIV exposure. In some cases, a person with HIV is subject to arrest, prosecution and imprisonment simply for failing to disclose his or her status to a partner, even when condoms were used and HIV transmission never occurred. Right now, prisoners and the poor, prostitutes and pregnant women are the main victims of these “HIV-related” charges. I doubt if an HIV positive multimillionaire, who pays a hustler “extra” to have bareback sex, is in any immediate danger of prosecution. But many others are. Even those who have HIV but don’t know it.
Make no mistake: This backlash is a direct result of the fact that so many of us are no longer dying on schedule. Combination therapy, in our enemies’ eyes, enables us “AIDS carriers” not only to “live longer” but, more important, to “infect more.” What’s next? Prosecuting people who expose others to hepatitis? Herpes? And what about those who carry genetic mutations, such as sickle-cell anemia, cystic fibrosis or Tay-Sachs disease? Right-to-lifers argue that human life begins at conception. Are parents breaking the law if they—“knowingly and intentionally”—transmit to a fetus an impaired genetic code that results in severe health problems or death? In a nation whose legal system has abandoned a public-health and civil-rights approach to people with HIV in favor of crime and punishment—and where HIV infections among the disenfranchised are still growing at staggering rates—such scenarios can’t be dismissed as paranoid. We’ve already seen yesterday’s “worst case” become today’s public policy: 1984 is starting to look like the birth of a freedom movement for HIVers; it’s 1999 that worries me.
As we enter this new year, we have much to be thankful for, not least the new therapies that are keeping some of us alive. But this is an ominous moment in history. Our priorities and actions in the coming months will reverberate, truly for decades. As you consider how in 1999 to spend your time and money, I urge you to reflect carefully. Now more than ever, we need policy and activism driven by the understanding that as goes our fate, so goes the fate of other disempowered communities. People with HIV are at the cutting edge of civil liberties, and we’re losing blood fast.