A friend recalled a recent encounter with a leader in the HIV field. The leader asked why the community of people living with HIV did not thank him for all his work. He was hurt and wanted answers. He is HIV negative.
We have been asked by “allies” throughout all our movements to be grateful to people who are not directly implicated in discrimination. When doing race-based organizing, I’ve heard white people expect to be thanked for standing against racism; men expect public recognition for standing up for women, for declaring themselves feminists or even for just retweeting a #MeToo statement; and heterosexuals expect to be recognized for how cool they are with LGBT people.
It’s quite odd to be asked to say thank you when racism, sexism, homo-phobia and transphobia affect all of us. Our privileges are shaped by other people’s oppression.
I am a gay man of color living with HIV. I have been challenged by substance use and other disabilities. I am intimately familiar with the ways that sexism, homophobia, racism, ableism and normativity work. I do not fit in. I am the target for many of the slings and arrows of this society. No one has ever thanked me for being discriminated against.
So when I hear people who consider themselves allies expecting to be thanked for their work, I wonder about their understanding of the world.
Some of them want to be recognized for remaining HIV negative. Some want to be thanked for doing their jobs. They get paid to work in a field that was developed based on our needs. We became vulnerable to HIV based on institutional, social and personal contexts—we do not necessarily get paid large salaries based on these vulnerabilities.
The HIV movement works best when we center people living with HIV. We have always had allies. In the opening of the remarkable ACT UP Paris film BPM, the at-large member explains to the prospective new members that they will accept being labeled HIV positive, that they will not claim to be HIV negative in public, that they must stand together with people living with HIV, without hesitation. It is in this spirit that I question people who want to be thanked. We stand together—not because we want recognition—but because it is the right thing to do.
HIV is a social justice issue. I expect people who care about these issues to stand up alongside us in our HIV work.
I am thankful that we have an HIV community. I am grateful each time we get to come together. I understand that our convening requires the efforts of many people—some who live with HIV and some who do not. Regardless, I believe in the work that happens when a group of people living with HIV come together: the new ways we learn to love ourselves as well as stand up for ourselves and one another.
I would caution those who expect to be thanked for doing their job or for being involved in HIV when they do not live with it. I would ask them to consider what they’re grateful for. We live in a world that still criminalizes HIV, where many key populations (e.g., sex workers, people of trans experience, people who use drugs, gay and bisexual men and migrants) are still criminalized and where there is less political goodwill to address HIV than there was in the 1990s.
As people tout “the end of AIDS,” I recognize that we—the community of people living with HIV—will still exist, and we will still live under the same systems that have marginalized us.