South Africa

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.

Are you HIV-negative? If so, why do you want to talk more about HIV? Is there a particular story or situation that changed how you understood HIV?

I am HIV-negative and want to talk more about HIV because I feel that there is something profound when a negative person does so, specifically when it comes to challenging stigma. The same is true for when men stand up for the rights of women or straight people for the rights of LGBT’s. It’s less defensive and also shows the ‘other’ that they have allies outside of their group.

My journey with HIV started when I dated an incredible man who also happened to be positive. I call him The Catalyst because he challenged every fear and stigma that I had towards the disease and to those who tested positive for it.

He was the first openly positive person I’d met and it just so happened that I also fell in love with him. I remember trying to process my feelings and fears in my journal, writing that I had finally met HIV, my fear, for the first time and that it had come wrapped in the body of someone who filled my heart with joy. Up until that point it was the disease of rural Africa, not something that came into my first world conservative bubble.

His transparency around his status set me off on a journey to learn more about the virus so that I could make an informed decision around dating him. As knowledge empowered, fear started to slip away and I have since dated two other positive men, knowing full well the intricacies of this relationship.

I included friends and family with me on this exploration and, as a result, a group of 50 odd private-school educated people learnt for the first time about mixed-status relationships, PrEP and the advances in treatment. As people raised in the fear-culture that exists in South Africa’s around HIV, we all saw it as a death sentence but learnt together that things had changed.

A combination of love, education and an open mind changed my stigma and I hope to be a voice that rids shame from the idea of getting tested or having the virus.

South Africa faces significant racial and economic disparities that affect access to HIV prevention and treatment. In an ideal world, what would HIV prevention and treatment look like throughout the country?

While travelling the US and UK this year I decided to get tested in every city I visited to see how they all handled it. From a men’s clinic in the Castro to a truck outside the Abby in West Hollywood, I watched as 1st World countries provided free and easy access to those looking to get tested. Even with the ease of access, I still felt a tinge of embarrassment as I stepped into each venue, my conservative up bringing telling me to be more discrete.

What I took from these places was that, in conservative countries like South Africa, testing needs to be brought to the population as they should not be expected to have the courage to look for it themselves. It should also be coupled with something less stigmatised like a cholesterol or diabetes test so that people don’t feel like they are being tested for their shameful sins.

I’d love to see churches provide testing facilities on their premises (pipe dream I know) and think that if we are able to get the religious and community leaders to embrace a culture of testing and treatment, we will see more people getting tested.

Add to that the visibility of proud, positive public figures and I think you will see more people going forward to be tested.

Are you an activist or do you work in academic or scientific fields that deal with HIV and sexuality? If so, describe the work you’re doing, talking about how you got involved and what you hope this work will accomplish.

I am a published author and feature filmmaker with an activist tendency and strive to just be transparent about my life as a gay man and also my support of people who test positive. I do this by being vocal and telling people’s stories, be it through a post on Facebook or characters that I write

 

This is the first interview from South Africa, exploring themes of being HIV positive and coloured in South Africa, and how more work needs to be done by younger LGBT individuals.


 

  1. Why did you agree to be interviewed on sexuality and HIV/AIDS?HIV/AIDS is an area that I’m quite passionate about. I was infected at a relatively young age (22). It has been a life-altering experience for me and I am keen to share my story with others who might benefit from it.
  2. What was the first moment you realized HIV/AIDS was part of how you understand your sexuality? For a long time before I was diagnosed as HIV positive, I was afraid of getting infected with the virus. Thus, for me, it was part of how I understood my sexuality long before I was actually infected with it. The prevailing stigma and HIV/AIDS being characterised as a ‘gay plague’ had seeped into public consciousness and affected the way I viewed my sexuality. Also, interactions with other gay men were marked by discussions around HIV/AIDS (‘Are you POZ or NEG?’) and the gay world appeared to be split into HIV negative and HIV positive men. Once I was infected, my identity as a gay man changed from an HIV negative gay man to an HIV positive man, which affected much more than just my health status.
  3. What is your current relationship status? Single
  4. How often do you get tested for HIV or other STIs?
    I get tested for STIs twice a year.
  1. Do you have a doctor who you feel comfortable talking to about sexual health issues?
    Yes, I met this doctor soon after my infection and started anti-retroviral treatment with him. We have been able to openly discuss risks, treatment, side-effects and other aspects concerning sexual health.
  2. Do you have any strategies you use to talk about HIV and sexual health with your partner(s)?This remains a challenge. If it’s a purely sexual encounter, I disclose if asked about my status. There are times when I do not disclose. One strategy is bringing up the idea of bareback sex and seeing how the other guy reacts. If we are dating, I tend to wait until after a few dates before I mention that I am HIV positive so that I give my partner a chance to get to know me as a person.
  3. In your experience, how has race and socioeconomic status affected the way you talk about sexuality, HIV/AIDS, or understand your overall sense of identity?In the South African context, both race and socioeconomic status have had a significant impact on the formation of identity. South Africa remains a racially divided landscape; this division is often along colour lines. We have come very far in the last two decades. However, significant challenges remain in this regard. As a person of colour, I feel that my race has impacted the way I view my sexuality and other aspects of my identity. HIV definitely does not discriminate along racial lines. However, access to treatment is very much dependent on socio-economic status and this if often linked to race. I’ve been lucky enough to always be able to access the treatment I require. Despite this, I can identify with sectors of the population who have a combination of stigma based on race/socio-economic status and HIV status.
  4. Have fear or stigma shaped your behaviors or conversations with sexual partners? Why or why not? Stigma has certainly made me more unsure about being open and honest about my HIV status. This has at times led to downright lying about my HIV status or sidestepping the question. HIV infection and transmission, the meaning of ‘undetectable’ or ‘pre-exposure prophylaxis’ are still so poorly understood in this context that I have often been instantly discriminated against when a sexual partner has learned that I am HIV positive.
  5. What tangible strategies might combat fear or stigma on conversations related to sex? A strategy that I think is of crucial importance is to target men who are already HIV positive. Many prevention campaigns and messages in the media after the initial HIV scare were directed towards uninfected individuals. The message was essentially to avoid infection at all costs. This made perfect sense. However, it has not always worked well. The downside of these types of campaigns was that if you were already infected, you were seen as a ‘lost case’. This was and continues to be very unfortunate. The fact of the matter is that an HIV positive individual needs to infect an HIV negative individual with the virus. If that HIV positive individual is more aware of risk, takes good care of themselves (including adhering to medication routines, maintaining an undetectable viral load, keeping in good general health and testing for other STIs), then there is a much reduced chance of infecting others. They can also be instrumental in terms of opening up the conversation and being a ‘positive’ role-model. Many negative individuals tend to be incredibly fearful of HIV infection and are not fully educated. Thus, we require HIV positive individuals who can say: ‘I have HIV, I’m healthy and I’m living my life to the fullest.’
  6. Particularly among men under 30, HIV infection rates remain high and treatment rates remain low. Do you have any ideas as to why this might be the case? I believe this links to my previous answer. The blanket of shame has never been fully removed. The same factors that led to an explosion of HIV/AIDS in the 1980s and 1990s are still operating today. Seeking treatment after infection also remains a sensitive and stigma-drenched issue. A slightly more recent reason for this nowadays (that I’ve frequently encountered) is the thinking that says you’re stupid to have caught HIV after all the prevention messages over the last three decades. Some people believe that we should not be concerned about it as a health crisis anymore. Even though it may be true that it has become a chronic and manageable illness as opposed to a fatal one, it is not viewed the way other chronic illnesses are viewed and this affects how it is managed. Unfortunately, whereas having diabetes does not say anything about you as a person, HIV/AIDS apparently still seems to say that you’re a slut, stupid or you somehow deserved a punishment from God.
  7. Have you been involved with programs related to HIV/AIDS advocacy?
    1. If yes, which programs? No.
    2. If none, why haven’t you gotten involved with these advocacy programs? I would like to be more involved. However, many programmes I have come across still tend to in some way blame the HIV positive person (even if it’s very subtly).
    3. Are there any programs you think are particularly successful? Any that may target HIV positive people in an empowering way.
    4. Do you feel there are better programs that could be put in place? Absolutely. See above answers.
  8. Describe your work [depends upon age] with older and or younger generations in terms of sexuality and HIV/AIDS advocacy? Not applicable.
    1. If no intergenerational work, why are there divides between generations of queer men?
    2. How can generational gaps be bridged? I believe that older men with HIV/AIDS have had a very different experience of the virus. Sharing their stories with younger men is of great importance. Some younger men tend to have an invincibility fallacy and do not believe that they can be infected. There has been little discussion amongst younger generations. They may have some awareness but do not grapple with the deeper issues around HIV/AIDS.
  9. Do you have any favorite artists who have created work that talks about sexuality or HIV/AIDS? And/or have you created any artwork that expresses your beliefs about or experiences around sexuality or HIV/AIDS?”
    1. Who are they? // What kind of work? Adam Levine (South African writer) wrote a book called Aidsafari. It was a memoir relating his HIV/AIDS journey. It was incredibly honest and candid. This gave a very real view of HIV/AIDS on an individual level.
    2. Why does their work resonate? // Are there any plans to create more work? It resonated because it was a real-life experience told very honestly. I could relate to parts of it.
  10. What advice about sexuality or HIV would you give to younger men who are having sex for the first time? They need to make conscious choices and act wisely based upon the facts. I would tell them not to fear HIV infection to the point where anxiety clouds their judgement but rather to be aware of the risks and how the risks can be managed. HIV infection remains a possibility but life does not end if it does happen. These days, medical facts alone are enough to go a long way in preventing infection (in addition to condom use, pre-exposure prophylaxis or managing risk with bareback encounters, such as having bareback sex with an undetectable individual, can minimise chances of infection). I would also tell them to learn how to have more conversations around sex, HIV/AIDS and other STIs. If a new generation of HIV negative young men have conscious sexual encounters with HIV positive men, most of the battle will be won.

I arrive in South Africa this upcoming Saturday, November 14th after nearly 8 months of anticipation. South Africa will be the furthest I’ve ever traveled from the United States, and the longest time I’ve traveled to one country outside of the U.S. The first two and a half weeks will be spent in Johannesburg and the final two and a half weeks will be spent in Cape Town.

I wanted to detail more specifically what I want to accomplish, outside of the call for written interviews.

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South Africa has been chosen as one of the places for Our Viral Lives to collect interviews because of its rich history of HIV/AIDS activism, its well-established archival materials, and the myriad of organizations committed to serving LGBTQ populations across racial and socioeconomic lines.

Like Mexico City, Our Viral Lives wants to begin by collecting written stories from individuals in Johannesburg, Cape Town, Pretoria (where I will be visiting personally) or any other surrounding areas. Any one of the following prompts can be answered by emailing me directly at kyle [at] ourvirallives [dot] org. Please include your first name (if you are comfortable sharing that), age, and city/town you live in. Feel free to answer in English and any other language you feel comfortable with.

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I’ve known since the beginning of the year that I would be going to Mexico City and South Africa but I haven’t know what I’m doing. Finally, I’m excited to announce a more concrete plan of what I’ll be doing and offer a little insight into the process. All of this has been a while in the making, but I’m happy to finally be going somewhere and setting myself up for a lot of exciting things to come.

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The following plan is a tentative look at what my 2nd semester will look like for my Master’s program. This will help to shape the future of Our Viral Lives as a project.

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Packet 1 Deadline – September 7

social_innovationMajor objectives

  • Articulate social innovation as it relates to narrative and archives around HIV/AIDS
  • Complete final version of social innovation and sustainability essay

Resources

Packet 3 Deadline – October 19

AIDS_sign_in_Tanzania

Major Objectives

  • Host 1 event in NYC — ideally related to using photography as a documentary, narrative and archival tool in LGBTQ communities
  • Research more cross-cultural perspectives on HIV/AIDS to prepare for my upcoming travels to Mexico City and South Africa
  • Solidify contacts in all travel locations and find out more about archival materials and community organizations
  • Continue connecting with HIV/AIDS within NYC in a variety of contexts, to further refine social innovation and articulate possible future archival strategies

Resources

Packet 5 Deadline – November 30

5550349271_834a5054c5_b

Main Objectives

  • Collect at least 7-10 written interviews (and find appropriate translation services when necessary)
  • Create an extended hybrid essay that combines autoethnography, archival research and more formal scholarship that focuses on at least 1 location that I traveled to
  • Create a tentative thesis statement to prepare in advance of G3 semester

Resources

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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