Victoria Noe

Award-winning Author, Speaker, Activist

AIDS: Mad as Hell. Again.

Jul 05, 2013 by Victoria Noe, in ACT UP , AIDS , Chicago , HIV , LGBTQ , Pride Parade
(This is a little long, so bear with me)

I planned to walk in Chicago’s Gay Pride parade last Sunday. But by the time I got near the staging area to join my group, the pain in my hip was growing worse by the minute. I knew I couldn’t walk, and even riding in the truck would be more than uncomfortable; forget about standing for a couple hours. I bailed just before it started. But before I did, I got mad.

It wasn’t my first Pride parade. I rode on the Chicago House float in 1990, when I was on staff there and the AIDS epidemic was going full force. I’d attended the parade, lived on the route, got caught in the traffic surrounding it many times. It’s always a festive event, one that has grown larger and more mainstream over the years (though the media continue to focus on the most outrageous drag queens in their post-parade coverage).

Politicians – who once avoided the gay community like (pardon the pun) the plague – now marched gladly. Hell, some of them are openly gay. The police superintendent was there, along with a contingent of gay/lesbian officers. Elementary school students, businesses, and church groups marched alongside the requisite gay bars and marriage equality groups: 204 entries. A million spectators.

Progress, right?

Let’s just say it was a glass half full, in my mind.

I fully expected it to be more festive, coming just days after the Supreme Court decisions kicking back Prop 8 to California and repealing the Defense of Marriage Act (DOMA). I was surprised by the rulings and thrilled for my gay and lesbian friends and family members.


In those 204 entries, AIDS was all but forgotten. There was a float for the AIDS bike ride fundraiser, and another for a training program to prepare for it. Both apparently (I didn’t stay long enough to see it) distributed free condoms. (That’s actually a great perk of attending a Gay Pride parade: you can stock up on free condoms.)

The third entry was from a coalition called CommUNITY. It’s made up of several AIDS-service-related organizations: AIDS Foundation of Chicago, AIDS Legal Council of Chicago, Test Positive Aware Network, Chicago House, Howard Brown Health Center and The Center on Halsted. Most of them were founded in the 1980s. They’ve been around a long time and do good work.

Their float consisted of a display of the names/logos of each group. There was no mention of the collective mission of CommUNITY (hereis their blog article about Pride). There was no mention of AIDS or the critical work they do. The people on the float and those walking with them threw Mardi Gras beads to the crowd.

The next day, when I was marginally calmer, I sent a Facebook message to AFC to ask why they had missed a great opportunity for awareness. Their response, that I posed “really good questions”, included the following explanation for why their main float didn’t include condoms: “we celebrated the colors and spirit of pride by distributing Mardi Gras beads.”

Well, excuse me all to hell. The parade was festive in 1990, too, but that didn’t stop AIDS organizations from publicizing their mission and services.

According to a report released in December 2012 by the Chicago Department of Public Health, HIV infection among gay men in Chicago was up 20 percent between 2008 and 2011: 35% for African-American gay men.

Some people put the blame solely on the gay community for the rise in infections. Let’s be honest: there are some who take unnecessary risks. Everyone does stupid things, no matter their gender or sexual orientation; that’s human nature. We become complacent, lazy. We believe we are the exception to the rule: I believe it’s called ‘denial’. It’s not limited to gay men.

But I also think there’s more than enough blame to spread around. When the media ignore rising infection rates to focus on dubious “cures”; when the medical establishment promotes the fallacy that living with HIV/AIDS is no big deal because it’s now just a ‘chronic’ disease; when funding is cut on the local, state and national levels; when AIDS service organizations ignore an opportunity to spread the word, that’s worse than complacency: that’s a sin. Maybe a crime.

I suppose there’s an argument to be made that a Pride parade is not the appropriate place to focus on condoms or PEP or PreP or anything depressing like rising HIV infections. Would Pride Fest have been better? Maybe, but AIDS was pretty invisible there, too except for the Trojan™ booth. And even though condoms are not the be-all, end-all of HIV prevention, it seems a waste to not take advantage of your target market, especially on an issue as serious as this.

Like many who were in the trenches at the beginning of the epidemic, I backed off in the 90’s. I was burned out. I kept up with the news about treatments and funding, but I kept my distance. I had other priorities, important ones. And I wanted to forget how many friends I lost. There was no good news in those days, only bad and worse. I assumed if I lost touch with someone it was because he was dead. That was true way too often.

Writing this blog and my books brought it all back. But what I’ve seen, particularly in the past year, has brought back something else: anger, fueled by a renewed and all too familiar sense of urgency.

Some say I should stay out of this discussion completely, that’s it not about me or people like me (straight). They said the same thing thirty years ago, too. Last time I checked, HIV was still an equal-opportunity virus, even though it hits gay men disproportionately in the US. You don’t have to be infected to be affected.

It has even been suggested that people like me are nostalgic for the “good old days”. Trust me, there was not much good about it. I wouldn’t wish that time on anyone. That’s why I find myself angry again: because the complacency I see now is reminiscent of those early days.

My friends at ACT UP NY are experiencing a second wave of activism, and frankly, I find it very contagious. I just hope it’s more contagious than HIV.