Posted in Activism, Compassion, Identity

Vibrancy on the Margins: AIDS, Solidarity, and Justice

I don’t always know how to express where my calling to do transformational change work comes from. I don’t always know how to give voice to what motivates me to not only act in solidarity but keep showing up and even on some level pay a cost for showing up. What won’t allow me to be quiet, what won’t allow me to get quiet to get along.

But when I think about where my sense of solidarity comes from there is one particular moment from my life that I go back to in my consciousness, one moment I revisit in order to understand even a little bit what my black and brown friends and communities of color in general experience in the world, what #BlackLivesMatter is really about. If you have never encountered cold, impersonal hate, then I don’t think you can understand both the paralyzing fear that it creates, and how alone the system leaves you feeling—the profound sense of isolation that comes with meeting hate like that. I have encountered it, and it’s a moment in a lifetime of such moments that I will never forget.

I’m old enough that the height of the AIDS epidemic was underway in my high school years and was in full force in my young adulthood. I’m old enough to remember my friends dying, and the fear and the confusion. And I’m old enough to remember going to the hospital and seeing the ways that they were treated—seeing the quarantine signs and the doctors and nurses all suited up. I remember mischievously taking the quarantine signs and sticking them to the nurse’s station in moments of powerless rebellion. And going to funeral after funeral and of people who were my age, in their early twenties—seeing them sick and knowing that once that diagnosis came down there was nothing that could be done. When I was 28 years old and tested positive it was right before effective anti-viral treatment became available and so when I got that diagnosis what I got was a death sentence, and I knew that.

The next year, when I was 29, right around the anniversary of my diagnosis, my partner at the time, my closest friend, and I went to Washington DC to see the quilt. It was the last time that the AIDS Memorial Quilt was displayed in its entirety. It stretched the entire mall, they had to carry pieces of it over onto other grassy areas because it was so large. The quilt is made up of rectangles of fabric, each one representing a person lost to AIDS, and each person’s rectangle is the size of a coffin, 6 feet by 2 feet or so. And if you’ve seen it yourself in person, you know how it feels to be walking amidst this sea of fabric coffins, each carrying someone’s name, while in the background the names are being read via loudspeakers. And it’s this just never ending, on-and-on naming of names; it just never ended.

aids-memorial-quilt_The NAMES Project Foundation, Photograph by Paul Margolies
Copyright the NAMES Project Foundation / Paul Margolies

As we were walking amidst the quilt I think it was my first experience of what real queer solidarity felt like, because there was a vibrancy to those quilts in the midst of the horror. It hurt so much to see them—I didn’t walk through them with a dispassionate look at each one; I knew this might very possibly be my fate. And I knew the ways in which my family struggled and I knew the ways in which people blamed me for my own infection, and the shame that came with that—shame that I couldn’t shake no matter how well I could have explained it away intellectually.

But at the same time there was this color and texture, and it was beautiful, it was magical—I’m a tactile person and I could kneel down and I could touch the color and the texture and I could see both what we had lost in its full color spectrum and I could also understand who we are in our full color spectrum, and I felt part of that world. And there was a moment where I felt like me in my full color spectrum, like this was where I belong, part of a movement, part of a community, part of a lived experience, that this is what queer was. And the point wasn’t that everyone who was represented at the quilt was gay—what I mean by queer is that this is what vibrancy on the margins looks like.

That night there was a vigil that started at the Capitol steps and processed to the Lincoln Memorial, all of us with candles in little cups, music playing over the loudspeakers. And there were so many people that it was slow, it was so slow, and we were shoulder to shoulder, trudging along. But it wasn’t claustrophobic, it felt like being physically held, it felt safe, I felt like I was encased in a hug or a wall of people who would stand with me and protect me. No one talked—the entire time, no one spoke, it was absolute silence. You could hear people’s feet, you could hear the music. But all along the route there were protesters. I hate using that word because I feel like protesting is an honorable call to rectify injustice, but these were people who were picketing our vigil with hateful slogans, things like “AIDS is God’s cure for faggots.” It was so painful to see.

Part of the way down I saw this coffin. And I don’t mean a cardboard representation, I don’t mean a pine box, this was an actual, full on, polished, brass-knobbed coffin. A white man—he looked like he was probably in his 40s—and his son, who looked like a teenager, they were there with this coffin, there to deliver a message of hate. And I remember the shock of it: this was DC, it would have been a massive endeavor to get it there—you couldn’t just drive a car up to where these people were and unload a coffin. They had to carry it, and they had to carry it from somewhere, not just from around the corner—they carried the weight of a full coffin. If you’ve been a pall bearer at a funeral, you know how heavy it is—empty it’s heavy. And these two people carried this coffin, to a place where people were mourning—basically, they carried this coffin to a memorial service. And worse, this was a place where a lot of us in that line of marchers had the same disease. So we were seeing our future—if we were lucky, if we would be lucky enough to be remembered and have anybody show up at our funeral at that time.

When I got close enough to read the sign they held, I read: “AIDS KILLS FAGGOTS SO WE DON’T HAVE TO.” And I remember being stunned. I can’t even tell you that it felt like being hit in the stomach because it was paralyzingly numbing. In that moment, and in the many times that I’ve sat with that memory, I know that I stared into the face of impersonal, cold hate. This wasn’t someone I might get into a heated argument with because we disagreed about politics. This wasn’t somebody who could be reasoned with. This was someone who felt entitled in the world to express his hate as free speech. This was somebody who felt no shame and was teaching this hate to his teenaged son.

It wasn’t that I hadn’t had plenty of experience with hatred. You couldn’t be young, visibly queer, trans, working class, and Catholic, like I was, and not have had your ass handed to you physically. I’d been jacked up by men telling me that they had the answer to my identity issues while they were trying to get into my pants. I’d been lectured by priests that if I just embraced Jesus, understood that homosexuality was the devil’s seduction, and turned away from the devil I would be able to not be who I was. I’d received the messages that if I just played nice, if I just wasn’t different, if I just didn’t look the way that I did, I wouldn’t get beaten. I’d had all of these experiences but they always had passion somehow tied to them—they were different for me in my consciousness and in the ways they impacted me.

There was no passion here, with this man and his son and their coffin. This felt like the closest I could get to impersonal hate. This person didn’t know me, didn’t care that I was terrified, didn’t care that my friends were dead and dying, didn’t care because I wasn’t important. I was only important enough to hate and to want dead. People who haven’t actually had to see or confront this sort of impersonal hatred think that it’s not possible—they want to believe that there’s always some sort of cause and effect, that if someone is afraid they must have done something to deserve being afraid. But when you are face-to-face with cold, hard, dispassionate hate, it’s no longer theoretical—it haunts you, because it’s so impersonal, it has nothing to do with you or your good works, it’s so cold and deadly.

What was so terrifying was that this guy wasn’t just one guy, he was one of millions. He represented an entire culture, an entire country that kicked kids out of schools, burned down Ryan White’s house, actively talked about quarantining people with HIV on an island, would rather see people die alone than fund health care and research. He might have been a single person but he was in tune with his government, his community, and his religious leaders, all of whom supported and perpetuated the same hatred that he had lugged to the national mall.

Being face-to-face with that cold, impersonal hate taught me that hate isn’t about violence. It’s not about losing your cool or committing irrational acts of violent anger. Hate is really about power; it’s about having the societally sanctioned power to do the system’s bidding. It’s about having the power to wield violence as a weapon for compliance. This guy didn’t feel any shame because nothing in his world reflected that what he was doing was wrong, there was no system to punish him. He wasn’t a lone human being or a “bad apple.” He brought forward a level of righteousness that is only possible when you see your views, your actions, and your hate as shared and backed up by every power in the world.

Given how tender my own shame around my HIV status was, I don’t know if I could have actually survived confronting that kind of hate if I hadn’t been held by shoulder-to-shoulder solidarity. I literally couldn’t fall down. I was surrounded by people who kept walking and brought forward an incredible emotional presence in the face of that hatred.

That’s what I carry with me. That’s my call. That’s where I go when I’m tired, where I get my understanding of why we cannot rest, where I get my embodied charge to take action. It’s what drives me to understand myself as both someone who lives on the margins and also someone who benefits from privilege. I am in need of solidarity in many ways and I am also an agent of an oppressive system in other ways. My memory of that day at the quilt is where I go to understand why I do what I do, where my soul-deep call comes from to fight racism as a white person. Because for me, solidarity means always doing the work so that no one is left standing alone in the face of impersonal hate.

I say all the time that if you are willing to shift into discomfort, someone like me gets to shift out of pain. You dealing with hurt feelings or mild shame or feeling awkward is the price that it costs sometimes for people like me and people who are far more on the margins than I am to stop feeling like we are at the edge of our existence, to stop feeling pain and agony and crushing, grinding injustice. So if I can take on discomfort for someone else, if I can do that work, I must. Because when we choose instead to be comfortable we are choosing to allow cold, impersonal hate its playground.

I can’t in good conscience leave that playground unattended. I can’t. Because I know what it felt like to stare that hatred down that day, and I don’t want my friends to have to stare that down. I don’t want my friends’ children to have to stare that down. And I know that black and brown folks have been staring that down for centuries. So if you ask me where my solidarity comes from, this is the memory I draw on, whenever I need the reminder of why solidarity is important and why choosing to shift out of comfort is necessary.

This post is part of a series of stories honoring my journey of living with HIV for twenty years.


Queer Blue Collar boy, Yogi, Buddhist, Black Belt who loves to teach kids & make stuff. A life guided by compassion and service is the reason I show up.

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