AIDS Crisis

World AIDS Day 2016: The Cusp Of Undoing

Today marks the 28th Worlds AIDS Day and I truly believe we are on the cusp of making historic advancements that will decrease new infections and offer better quality treatment for people living with HIV. But there’s a catch. As we all know, Donald Trump was elected president, and represents one of the many political leaders and parties threatening smart, effective public health policy. From the erosion of the NHS in the United Kingdom following Brexit to Trump’s HHS pick who is a vocal critic of the Affordable Care Art, there is a real possibility we can turn back every advancement we’ve had and choose not to head the guidance of countless global health organizations.

It’s important to remember that our Vice President-Elect, Mike Pence, thought it wise to cut funding to Planned Parenthood in Indiana. The result? A massive HIV outbreak that was 100% preventable. It’s also important to remember that while high rates of HIV infection exist in New York City, Washington, D.C., Philadelphia, Chicago, and other known centers, HIV infection rates are higher in places like Atlanta, Miami, and New Orleans—cities that exist in states with fully conservative legislatures who have blocked healthcare expansion at every turn.

What this means is that HIV prevention and treatment in this country continues to be largely unequal. White, gay men continue to have better access to prevention methods (including PrEP), and are more likely to have an undetectable viral load if they are living with HIV. These disparities mean that Black and Latino men, have disproportionately high new infection rates, even as programs that target these communities are being developed. Further cuts to the Affordable Care Act could only exacerbate these inequalities.

The question I think a lot of us are asking is, “What can we do?” I’ve yet to see a definitive plan to address HIV/AIDS policy in the context of a Donald Trump administration. However, I don’t think that means things are hopeless. There are some tangible ways to engage with political systems, with service organizations and on an individual level.

  1. Find your testing site. This seems basic, but it really is the first regular way to know your status and seek out treatment if you are diagnosed as HIV positive.
  2. Call your Congressmen and local representatives. First, find out who these representatives are and tell them that supporting the Affordable Cart Act and funding for HIV/AIDS prevention and treatment is important. Even if you want to email them, calling is more impactful.
  3. Donate to organizations that promote HIV/AIDS justice. I’d suggest any of the following, though be sure to talk a look at some of the other local organizations in your area.
    1. Visual AIDS: https://www.visualaids.org/support
    2. The Black AIDS Institute: https://www.blackaids.org/aboutus/donate
    3. Planned Parenthood: http://ow.ly/h7it306H2SVA
    4. The Latino Commission on AIDS: https://www.latinoaids.org/support/donate.php
    5. National Minority AIDS Council: https://nmac.z2systems.com/np/clients/nmac/donation.jsp
    6. APICHA (New York City): https://apicha.org/donate/
    7. Positive Impact Health Centers (Atlanta): https://donatenow.networkforgood.org/pihc25thyear?code=25thyear
    8. Project Lazarus (New Orleans): http://www.projectlazarus.net/donate.htm
    9. The Health Foundation of Greater Indianapolis: http://ow.ly/Jv5k306H4dA
    10. San Francisco AIDS Foundation: http://bit.ly/2fNstoG
    11. AIDS Project Los Angeles: https://apla.netdonor.net/page/2606/donate/1
  4. Building educational programming around HIV/AIDS is a key component of ending an epidemic. Public policy alone will not stop HIV. In a post a few days ago, I outlined a course around HIV/AIDS justice. Given the fact that so little history about HIV/AIDS is taught in schools, more insurgent education is important.
  5. Researching and participating in resurgent HIV/AIDS activist movements. Now, more than ever, ACT UP and other similar branches need your support. There is much to do to grow the capacity and diversity of these organizations, but in the 1980s and 1990s they achieved tremendous progress in HIV/AIDS activism and are worth emulating in some capacity.

I want to end this by saying that I’m not a journalist. I don’t have an academic job. The work around HIV/AIDS I do is self-directed and self-funded but I’ve made it a personal mission, irrespective of my profession or means of living, to be an advocate for HIV/AIDS justice. I saw my great uncle die. I’ve seen too many friends get HIV. I’ve felt the personal shame over my sexual behavior. I believe a new and better sexual culture, and world, is possible. Today I ask you to join me and pledge to commit yourself to stop HIV and start creating new, sex-positive spaces everywhere.

viral fragment #3498014: simon nkoli

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.

==

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.

Principles That Define This Archive

Yes, there has been something of a radio silence for a while on Our Viral Lives. But do not despair. Behind the scenes, I’ve been thinking deeply about the book project that will be finished (as a draft) next August, and some of the new components of the archive that will be launched once my M.A. semester finished up in a few weeks. I’ve also been thinking a lot about the principles that underpin this archive. I don’t want to call what I’m publishing here a manifesto (because a manifesto almost by its nature implies fixed principles) but there are ideals that guide my work as an archivist, curator, and individual living in the moment of this HIV/AIDS crisis.

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Announcing Those We Hold Close!

It’s been a while since I’ve posted anything, I know, but I’ve been thinking a lot about how to move Our Viral Lives forward at the same time that I was sidelined by looking for a new job. But I’m back and happy to announce the latest campaign Those We Hold Close, which is an opportunity to reflect on artists who have been lost to AIDS, and how their legacies and/or specific works influence our own writing and thinking in 2016.
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Simon Nkoli’s LGBT Activist Legacy

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.

Brett, Johannesburg, Age 32

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

 

Krishen, Johannesburg, Age 28

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.

Juan Blanco-Heredia, Mexico City, Age 32

HIV has impacted my day-to-day life since I devoted my life to basic research about the virus. At the moment I am a PhD student in the National University of Mexico (UNAM), close to fulfilling the requisites for graduation, I do my research in the centre of research in infectious diseases (CIENI). It is a laboratory that belongs to the Ministry of Health.

HIV cure is the career focus of many scientists around the globe. It is essential to join minds and efforts in order to find strategies that could lead us to this elusive goal. Being a gay man growing in a third world country where stigmatization strongly affects the perception of HIV disease, I started my scientific career with the aim of contributing with knowledge that could someday lead to HIV cure. It is a motivation for me knowing that I can contribute to this goal, when I have been around young men that leave themselves to die of AIDS in my country because of stigmatization, ignorance and fear.

My research at the moment is contributing with knowledge on a model where two selective pressures (antiretroviral therapy and the immune response) could converge to limit HIV variation and replication. I have been able to find widely spread responses to HIV peptides that include drug resistance mutations, that could be included in therapeutic vaccines used in cure strategies such as the “kick and kill” approach to HIV control or the pharmacologic-immune control of HIV replication. I’ve already submitted the paper regarding this research. If accepted, it will mean a successful contribution to the field.

//

Phase 1 of Interviews: Mexico City

In a recent post at Medium I laid a framework for conducting the first phase of Our Viral Lives interviews. I stressed participant-driven philosophy whereby individuals would have agency to talk about sexuality and HIV/AIDS, including those who don’t feel as comfortable speaking in English. As a result, I developed a prompt to begin the first stage of interviews. This can be answered at an individual’s leisure. If they wish, they can then choose to participate in a longer, in person interview.

If you would please to participate, please reach out to me on Facebook, Twitter, or email kyle at ourvirallives dot org. You can answer the initial prompt in either English or Spanish, depending on which you’re most comfortable with.

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Sex Without Boundaries

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.)