HIV 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.

In the past few weeks, I’ve been thinking and planning for what has always been the goal of Our Viral Lives: to write a full-length book that provides an insight into how digital storytelling practices can build HIV/AIDS political power and transform individual perceptions, often negative, of HIV/AIDS. I’m happy to now share the outline for this writing. Let me know if you have any questions.

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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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I don’t live with HIV, but I coexist with it, meaning I had losses due to the HIV and some of the people I love the most live with it. I am 18 years as an activist on HIV prevention. I am part of the generation that heard about HIV when I was about 10 years old and from there grew up listening to prevention messages, especially misdirected and full of prejudice, which had the impact that my early sex life were full of fear, displeasure and prejudice. When I reached 18 years of age I began meeting with a group of young people my age to discuss issues affecting us as LGBT. At 20 I started volunteering at a nonprofit called Colectivo Sol, AC, www.colectivosol.org and have devoted much of my work to reduce stigma and discrimination related to sexual orientation, gender identity, and HIV infection.

Currently I’m working as project assistant for the Political Sustainability Project, funded by the International HIV/AIDS Alliance. Colectivo Sol is the linking organization for the Alliance in México. We are working on budgetary advocacy aimed to sustain the civil society response to HIV in Mexico given that the international donors and foundations are leaving Mexico due we were declared a middle-income Country by some international instances on economy. We’re training ourselves and other CSO and activists on Advocacy, specifically on Budgetary Advocacy so we can meet Members of the Chamber of Deputies in Mexico in order to ensure the government investment on HIV prevention and care.

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No vivo con VIH, pero sí convivo con el VIH, es decir, he tenido pérdidas a casua del VIH y algunas de las personas que más quiero viven con VIH. Tengo 18 años como activista en prevención de VIH. Formo parte de la generación que escuchó acerca del VIH cuando tenía alrededor de 10 años de edad y desde ahí crecí escuchando mensajes de prevención, principalmente mal dirigidos y con prejuicio, lo que tuvo como impacto que mis primeras relaciones sexuales estuvieran llenas de miedo displacer y prejuicio. Cuando alcancé los 18 años de edad comencé a reunirme con un grupo de jóvenes de mi edad, en ese entonces, a discutir sobre temas que nos afectaban como LGBT, a los 20 comencé como voluntario en una OSC, llamada Colectivo Sol, A.C., www.colectivosol.org y he dedicado gran parte de mi trabajo a la reducción del estigma y la discriminación relacionadas a la orientación sexual, identidad de género, y a la infección por VIH.

Actualmente estoy trabajando como asistente de proyecto para el Proyecto de Sostenibilidad Política, financiado por la International HIV/AIDS Alliance, que tiene su base en Brighton, Reino Unido. Colectivo Sol es la organización de enlace para la Alianza en México. Estamos trabajando en incidencia presupuestaria destinada a sostener la respuesta de la sociedad civil al VIH en México, dado que los donantes y fundaciones internacionales están dejando México debido a que fuimos declaradas un país de ingreso medio, por parte de algunas de las instancias internacionales en materia de economía. Estamos entrenándonos y a otras OSC y activistas en Incidencia Política, en específico sobre Incidencia Presupuestira de manera que podamos reunirnos con miembros de la Cámara de Diputados en México con el fin de asegurar la inversión del gobierno en la prevención y atención del VIH.

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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Introduction To Social Innovation Methodology

When I started in the SIS program, the concept of “social innovation” in relation to Our Viral Lives felt like an unnecessary abstraction. I remember at one point even considering switching out of the SIS concentration because I felt my work didn’t “fit in” to the mold of a social innovation project. But the more I started to concretely plan out Fall 20015—both in regards to launching new programming and also solidifying travel plans in South Africa— I realized how clearly I was doing something that was in fact innovative and was focused on making a social, political and historical impact on discourse around HIV/AIDS for LGBTQ-identified people.

To make sense of the potential social impact and innovation of Our Viral Lives, it’s necessary to consider three different elements of the project: content, design, and method. They are all interrelated but they serve to highlight unique components of social innovation discourse.

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