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Community & Behavioral Health | Recovery | Social Change


Changing the Conversation

Remembering on World AIDS Day

12/2/15 01:32 PM | Marc Dones | HIV/AIDS

Red Ribbon World AIDS DayIf something is to stay in the memory, it must be burned in: only that which never ceases to hurt stays in the memory. —Friederich Nietzsche, On the Genealogy of Morals

Loneliness is violence in slow motion. —Robert Glück, Jack the Modernist


A few months ago I met an ex of mine at his apartment. As dinner led to kissing because sometimes dinner does that, he put a hand on my shoulder and said, I want you to know I’ve tested positive. I said, Ok, because I wasn’t sure what else to say. Later he texted me about how he had felt shame and fear, and I asked if I had ever made him feel that way. He said, No, but then he didn’t text me again which of course meant Yes.

I thought about our dinner yesterday morning because it was World AIDS Day, a day that is not about me because I am not positive, but is about me because I am a gay man and a person living in the shadow of a pandemic that is robbing nations and communities of their men, women, elders, and children.

When I think about the early days of the epidemic, I remember when it was called Gay Related Immune Disorder or GRID. Before that, it was called the gay cancer, which I don’t remember. I thought to myself about the way he looked down when he told me he was positive and how much HIV/AIDS has become a task of telling stories.

Of remembering the time when the government ignored the deaths. Remembering the names of the dead. Remembering when Greg Louganis hit his head, and everyone panicked about whether or not the pool was still safe, but no one panicked about Greg. Remembering the obsessive hunt for Patient Zero. Remembering the racist claims that this was all because black men had sex with monkeys. Remembering the names of the dead. Remembering the names of the living.

On World AIDS Day yesterday I thought about how when I came out to my mother, she didn’t believe me. Years later, she told me that for the first year or so she thought I was going through a phase. Like when you wanted to be Wiccan, she says into a gimlet. When I realized that it was real, I was scared. I wanted you to be safe, and I was so scared that the world was going to mistreat you for being who you were. You were so young, and I was so scared that you were already black in America—how much could you really be expected to shoulder? I didn’t want you to get attacked; I didn’t want you to get sick.

This is how we used to talk about HIV. No one talked about what you had. We just said you were sick. You’d become sick. We sometimes still talk about HIV in this way. Or, we talk about people who are either clean or dirty. We make the virus a state of being: something that alters you at the core, that changes who you are. These constructions erase the person and only leave behind the virus. The stigma embedded in HIV is our inability to separate a disease and its pathology from the person who has it.

This is what it’s like to not be remembered: your life goes away.

I wanted to think about memory because it is memory that we have lost in the shadow of the epidemic. People vanish and are replaced by transmission vectors, by indices of risk, by the disease progression, by cell counts. People are forgotten.

I started the day remembering that dinner and remembering that I had done something wrong. I would like to enjoin us all to continue to unpack our feelings and reactions to HIV/AIDS. We have more work to do to erase stigma, to create space for conversation about HIV, to eliminate shame and fear. We can do more than remember the names of the living—we can remember that they are alive, often struggling, and need our support; and that we love them.

Watch Marc's recent t3 webcast--Forgotten History: Integrating LGBTQ Youth into the Mental Health System:

Watch Marc's Webcast

For HIV/AIDS resources from the Center for Social Innovation's Praxis project, click here.

Marc Dones

Written by Marc Dones

Marc Dones was a trainer for t3 and the Center for Social Innovation supporting human service providers in delivering recovery-oriented, trauma-informed services to people living with substance use disorders, HIV/AIDS, and other related challenges. Previously, Marc worked at the Massachusetts Executive Office of Health and Human Services, focusing on youth violence prevention and reduction as well as systemic responses to youth homelessness. Marc was also the Director of Project Management for Child and Adolescent Services at the Massachusetts Department of Mental Health. They served on the Massachusetts Commission on LGBTQ Youth and co-chaired the Administration Committee. Marc is a graduate of New York University's Gallatin School with a concentration in Psychiatric Anthropology. In their spare time, Marc hangs out with their dog, rides a bike, and is generally impractical. Marc's favorite color is chartreuse.