HIV/AIDS Activism

The following post is meant to a practical way to discuss the HIV/AIDS crisis in an academic setting, while focusing on using knowledge about HIV/AIDS history, arts and culture to generate new activist potentials.


Action Appendix #1

Sample Lesson Plan For Course on HIV/AIDS Justice

Given the misinformation, or lack of information, being taught about HIV/AIDS, one of the biggest tangible steps to build justice for people living with HIV and for stronger sexual health programs in general is to educate individuals about the complexities of HIV/AIDS and its effects on LGBTQ individuals. I have tried to build in levels of complexity that can be adapted for different audiences. Any of these individual sessions can also be adapted for single classes or workshops in a variety of ways. Importantly, a major component of this syllabus is based in practical design, whether for a research project, community action, or intervention.

(Given the sensitive or challenging nature of the materials, this is suggested for individuals over the age of 18, though certain sources can be adapted for even younger audiences who we know are also at risk for contracting HIV.)

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This creative piece will be part of my upcoming book Our Viral Lives: A Primer on Digital Storytelling Practices for HIV/AIDS Justice. Simon Nkoli was the first Black gay activist in South Africa. I spoke about him previously in New York City. You can listen to that talk here.

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But now, we are on the verge of a new South Africa. Now we are in the process of planning a non-racist, non-sexist future, and the protection of gay and lesbian rights must be part of that planning…As a black man, I am telling the system that I will no longer stay in a little box in Soweto or any Ghetto. As a gay man, I am telling the system that I will no longer stay in a little box in the closet. –Simon Nkoli

on the 7th floor of a large, rectangular building, in a cluttered wood-paneled room, I stare out at the city of johannesburg, sprawling and geographically isolated neighborhoods running all the way to the horizon. this is the city where simon nkoli was born and where he would die of aids-related complications in 1998.

what was I doing there, a white American man, in the South African LGBTQ archives?

what did I hope to get from accessing the mementos of Nkoli’s life, the traces of his body I would then have to reconstruct as an outsider?

I had, for a long time, wanted to visit south africa without really knowing why. But now, in this archive, I realized I was interested in the ability of a country to transform itself so quickly, that this space I was sitting in was just over 20 years old, and in that 20 years one of the most repressive political regimes in history had turned into a plural democracy, run by a majority black party.

& still, despite this progress
despite the representation of black voices in all levels of government
an anguish
queer and black and poor bodies dying of aids, even as people like simon spoke out

enter simon, the man imprisoned in a high profile travel for his activism against the apartheid, who came out to his brothers, and created a space for what it meant to be lgbtq and revolutionary. who would later, in the black townships, plaster his naked body, cock wrapped in a condom, for sex-positive messaging when he led the township aids project. simon, one of the few activists who really embodied the “gentle angry activist” – soften spoken, but intense, directed, and focused on empowering communities within.

simon, who died, and largely seems to be forgotten in history, except by a few people privy to just how impactful his legacy was.

on the 7th floor of a large, rectangular building, in a cluttered wood-paneled room, i only get a taste of who he is, fragments, but this is the burden and challenge of traditional archival research. I, as excavator, get the bone fragments and must make a skeleton that I breathe to life through narrative.

but do I understand the pattern of the bones?

can I say I know simon?

whose history and cultures do I betray in a crisis that is, without doubt, a global pandemic?

these are the questions I must ask in order to form an ethical consciousness as archivist. they are also questions that guide me, in my white cisgender male body, to communities disproportionately affected by HIV. the moment I step outside of wits university, people will warn me to be safe on the streets. they warn me that I will be viewed differently in my skin. but they don’t understand how I have always been viewed differently in my skin, so I find myself unafraid, like simon was unafraid, to challenge assumptions in this city.

today I pour over the international correspondence to simon. far flung, these letters and postcards elicit laughter, tears, optimism, and love. there’s a surprising letter signed by sir ian mckellen that thanks simon for his voice and encourages him to write his book (that will ultimately never materialize). a writer from toronto shares his treatment regime (is he still alive?). another man gives one of those sexualized joke cards, men dressed up in leather, as I try to imagine what their relationship could be.

despite all of the historical information I could access in the archives, this act of sorting through correspondence is the one I find most exciting. I examine every postmarked stamp, the quality of the writing, all of the different addresses, presumably as simon cycled through various lovers, and most of all the intimacy, bodies undiminished by contagion permeating every other aspect of their lives.

& hope
hope that even I don’t experience
now, in 2016
as an HIV negative man
living with access to preventative medicine

hope for me is the message of my dialogue with simon, why I’ve come to south africa at all, why I need south africa right now, as I’ve built out this archive. hope. because my brothers and sisters are dying. because simon died when he didn’t need to die. because…I break off from this thought…

I sometimes wonder if I have the wherewithal to sustain my activism in a time of crisis. I wonder because I project an image of strength when I feel vulnerable inside. I project an image of strength because I am the activist committed to this digital archive, an activist raising awareness about hiv/aids and I have to be strong. But I am as uncertain as anyone else, even as I have a language to express this uncertainty, a language that others may not have.

simon, simon, please speak to me if you are there
I don’t believe in ghosts or miracles or anything supernatural
but I believe you are present
here, in the lines of this text I read, written to you

simon, simon, know I’m listening to you even if I don’t understand everything
know I’m listening to you
you inspired a generation of activists in south africa
you inspire a new generation worldwide
the ones who have the chance to visit you, here, in Johannesburg

simon, simon, I am worried about the future
I’m worried about where activism will go
but I look at your body, often naked and vulnerable,
a body that vehemently resisted the closet
and find hope again.

I spoke about your legacy in 2016 in new york city
I hope I did you justice,
simon, we will do you justice—

every day I find hope again because of you
but now, we are on the verge of a new South Africa, you said in the mid-90s
today we are on the verge of a new world
where your stories are as much a part of that futurity as my own.

On Thursday, January 7th, I spoke at the Bureau of General Services-Queer Division in NYC. The topic of my discussion was Simon Nkoli, the first Black gay activist to come out in the country and one of the most central figures in ensuring LGBTQ people protected in the new constitution post-Apartheid.

His legacy was one of gentle anger. This idea might seem contradictory, but to me gentle anger is a way of defiantly confronting the exclusion of LGBTQ people in a society and, as importantly, emphasizing open communication, pleasure and affirmation as tools of movement building. Gentle anger critically refuses the idea that LGBTQ people aren’t essential to a democratic society.

Simon may have died in 1998 from AIDS-related complications, but his legacy endures to 2016. I hope that we can take the time to understand how previous movements of emotional protest can re-envision the activist and creative work we’re doing today.

Here’s the talk for those who are interested! Stay tuned for the slides, which will be uploaded shortly after the best format for them is found:

Please visit this link to see all of the related slides from the event.

I feel like living in a world and talking so openly about queer sexuality and HIV/AIDS leads to a constant sense of alienation and disconnect. But what could happen if there was an easy, visual way to showcase that people living with HIV, who have experienced the loss of someone with AIDS, are on PrEP, or otherwise are confused about which sexual health services cater to LGBTQ-identified people? It seems like some of the silence, stigma and sense of disconnect could be lessened.

As I started to think about what Our Viral Lives could do, I again gravitated toward the idea of using digital tools. Having something that can be easily accessed around the world would allow more people to connect more easily, and thus the “Sex Without Boundaries” map was born. The idea is that if you’re poz, if you lost someone to AIDS, want to mention you’re on PrEP, or have a sexual health resource to share, you can.

This map will serve to build up more and more people over time to highlight the idea that we’re not alone, that there are people who share in our experiences, and that we can be empowered in our own communities to discuss sexuality and HIV if we haven’t already. Currently, anyone can reach out directly to Our Viral Lives at kyle [at] ourvirallives [dot] org to get added to the map. You can also send out a tweet here. All you need is your first name last initial, age, gender and/or sexual orientation, and HIV status, if you’re on PrEP, and since when.

(And if you have any other questions, don’t hesitate to reach out directly.)

There are so many urgent problems worth solving in this world that it becomes difficult to decide what your focus will be. Focus should not be assumed as such an absolute. Instead, it should be considered a method for approaching one particular social problem in a way that promotes better equity and innovates in some way. A problem like HIV/AIDS can never be “solved” and one “solution” will always be ineffective, but there is, at least, space for new targeted prevention and treatment programs to pop up, and better yet, there are ways in which we have failed whole populations for decades and are finally recognizing our errors.

When it comes to the HIV/AIDS crisis, nothing is too late because it’s a crisis that endures. It’s a crisis that, despite all of the dollars and knowledge and political will (depending on where you live), remains intractable. My background might not be in public policy nor have I worked directly with health organizations in an official capacity, but it’s not impossible to envision solutions given my background in HIV/AIDS history, contemporary art, and storytelling. My own story begins again and again. The narrative of my sexual history and consciousness has meandered many times, calling into question the crux of why HIV/AIDS remains omnipresent in queer communities: the interplay between identity and desire.

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The following piece was originally written by Australian HIV/AIDS activist Nic Holas and founder of the advocacy organization, The Institute of Many. It appeared first here in Sydney gay news magazine, SX. As is reported at ABC News, new HIV infection rates remain at 20 year highs, and sexual stigma runs rampant, especially among men who have sex with men.

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Sebastian Robinson was in a production about Australia’s early response to HIV when he was diagnosed HIV positive. But rather than retreat from the play, he drew strength from the very stories he was conveying on stage.

I first met Sebastian Robinson in February of this year, in Sydney, during the Mardi Gras season. I was perusing the apps in my habitual manner when a message popped up. We got to chatting and realised we had some things in common. He was in town performing in a verbatim play, The Death of Kings, about Australia’s early response to HIV. I was an HIV positive activist and knew some of the people in the play. We were both being interviewed for a documentary, Transmission, which chronicled Australia’s response to HIV.

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The Stigma Project is an organization founded in 2012 by Chris Richey and Scott McPherson. Their mission is “to lower the HIV infection rate and neutralize the stigma associated with HIV/AIDS.” We wanted to highlight one of their great visual campaigns called “Live HIV Neutral,” which tackles some common sources of stigma surrounding HIV discussions, including the “clean” vs. “unclean” dichotomy that plagues those using dating apps and the misinformation that continues to spread about how HIV is transmitted.

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