I was on staff at Chicago House when we opened the city’s first hospice for people with AIDS in January, 1990. At that time, there was only one funeral home that would accept the bodies. Nursing homes and stand-alone hospices refused anyone dying of AIDS. Sympathy was extended only for those who contracted the virus in a way that defined them as “innocent victims”: blood transfusions or birth.
It was a beautiful old house near the lake shore, donated to our organization. The doctor who lived next door was opposed to it, but once he understood that people would arrive in an ambulance and leave in a hearse (unlike crowds lined up for the overnight shelter he imagined it to be), he calmed down. No record exists of how adamantly he opposed the drug house across the street.
The hospice had room for five people, and when we welcomed the first group, the room on the first floor, to the left of the front door, was occupied by a woman of color.
She’d been infected with AIDS by her husband, an IV-drug user, and though he was somewhat healthy, she was dying. She despaired of what would happen to her children, who would be left with her husband and later, presumably, foster care. As I recall, there were no family members willing or able to step up and ease her mind. Later, a friend of mine would start a stand-by guardianship program for women with AIDS – similar to open adoption – that would’ve allowed her to choose a family for her children, reducing her stress and giving her a little peace. But that happened too late for her.
Over thirty years since the start of the epidemic, AIDS is still looked at by many as a disease of punishment: for being gay, for being a drug user, for being promiscuous, or all of the above. But AIDS has always behaved like any other virus: it doesn’t discriminate.
From the beginning, there were services directed to gay men (still disproportionately affected by the epidemic); few focused on women. It was a sad joke in the old days that “women don’t get AIDS, they just die from it.” That’s because until the women of ACT UP waged a fierce campaign to change the definition of how the virus presented, women with AIDS weren’t properly diagnosed.
In 2015, there are great advances in both treatment and prevention, but for many women, they are not practical or affordable. Women may be in abusive relationships or in a culture where they are not allowed to insist on using protection during sex. They may not have access to effective prevention and treatment. Or they might just feel uncomfortable walking into a clinic with “gay” in the title.
Human nature being what it is, there are always those who believe they are invulnerable to any consequences, particularly when it comes to unprotected sex. That explains why AIDS and other STIs are on the rise among senior citizens: when unplanned pregnancy is no longer a threat, the effort to prevent sexually-transmitted infections fades.
Luckily, there are organizations that are doing remarkable work to address the vulnerability of women. One of my favorites is The Red Pump Project, which focuses on educating African-American women on the options available to them. Fully 84% of new infections among women are through heterosexual sex. And even in 2015, a woman in the US is infected with HIV every 47 minutes.
I know a number of women who are long-term survivors, but I don’t know many women who died of AIDS. That woman at Chicago House was the first, and it had a profound impact on me. Anytime someone passed judgment on a gay man for being infected, I called them on it with the proof that the virus doesn’t discriminate. You can’t have it both ways: you can’t say it’s a punishment for some and not for others. A virus is too stupid to pick and choose.
So today, I hope you’ll check out The Red Pump Projectand other organizations in your community that are reaching out to women, particularly women and girls of color, at risk for infection. There’s a lot of stigma attached to AIDS – still. But it can be eliminated with education and awareness. Find out how you can help yourself and your friends.