HIV

Sample Course Guide on HIV/AIDS Justice

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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Today is National HIV Testing Day!

June 27th is National HIV Testing today and a reminder to get tested to know your HIV status. Many people, particularly in poor communities or in the South, have difficulty getting regular HIV tests, particularly if they identify as LGBTQ. But even in bigger cities, people may be unaware of the different testing options that are available. Others might not think they’re at risk of getting HIV, even though they are.

AIDS.gov, run by the US Department of Health and Human Services, has a tracker that allows you to service by your geographic area. Check it out here or speak with your current primary care provider.

It’s also important to remember that HIV testing offers a window period, meaning that for rapid HIV tests, it can take up to 3 months for an HIV infection to be tested. So, if you think you may have been infected, get retested after the window period has ended and be upfront with your partners about your sexual behaviors. Simply getting tested isn’t enough; having open conversations about risk and desire are key component in stopping the spread of HIV.

We can all work together to end stigma surrounding HIV and create an HIV-neutral world, where people can feel comfortable having sex, no matter their status.

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Phase 2: Stories from South Africa

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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Ricardo, Mexico City, Age 28

HIV has impacted my life in both very positive and very negative ways. My experience with HIV started two years ago when my boyfriend back then disclosed his HIV+ status to me under unfortunate circumstances (I was breaking up our relationship cause I found him cheating on me). It caught me by surprise because, although we just had like 6 months being together, I trusted him so much. We even discussed the STD topic a couple of times, especially because for one reason or another, we already had unprotected sex. At that time, he told me he was free of any STDs and so I believed him. I was probably naive or stupid but I loved him and I couldn’t imagine he wasn’t being honest.

When he finally told me about his status, I was even more shocked of the way he spoke it out, I’ll never forget his words,  OK, so you really want me to tell you what’s wrong with me? I’m going to die”… Now that I look back and analyse his phrase I realise how wrong it is in so many ways. He also had blamed me for giving it to him. I was totally overwhelmed because first, I was sure that before being with him I was negative and I couldn’t figure out how, had I given it to him, I got it.

That day [he told me] I went to the clinic to be tested and the result came out negative. He then told me the truth that he knew he was positive since two years. To my dismay the health worker told me the result wasn’t conclusive at that point because I had to wait at least a month and a half after exposure to be sure. So that whole month I waited was a nightmare in some aspects because being from a generation who grew up with movies like Kids or Philadelphia, I really thought I would end up seroconverting by the end of that month. Any simple change on my body was, to me, a sign of seroconversion.

My boyfriend didn’t help much to relief me,because he was always complaining of how bad it was to live with HIV. He even told me, a couple of times, that he was thinking of leaving his drugs because they would damage his body and he was especially concerned of his looks. So it was such a stressful time for me. By the time I could have myself tested again I was resigned in some way and I ended up assuming my responsibility. Nevertheless, it came out negative again. My boyfriend and I split a little after that; he didn’t want to be with me anymore even if I was ready to accept his positive status.

After that I became paranoid and I got tested at least every two months for a year. I couldn’t understand how it was possible that I didn’t get HIV. I started talking with doctors and began searching in specialized forums, where I became more aware of how HIV really works. I can say I learnt the bad way. I also started to realise how many poz friends I actually had but  didn’t know of their status until I told them my experience in an attempt to understand this bad situation.

Now, after two years, I can say I’m a more informed person. I can say I’ve learned to appreciate my life and to take responsibility of my actions, even if I know for sure that under a correct treatment and early detection, HIV is not a death sentence. I have also realised that I would engage in a serodiscordant relationship with someone I love, as long as the other person is honest and responsible for himself, that is if he loves himself. This is why I think it’s important to fight the stigma of HIV, because I’m pretty sure my ex boyfriend lied to me out of fear. That doesn’t mean I justify his actions, but I wonder how much of this fear comes from a society that is afraid of what it ignores or misunderstands.

[Minor edits have been made in grammar, and one sentence has been changed for clarity sake. The author of the piece authorized these changes.]

Alex, Mexico City, Age 26

El 17 de diciembre de 2014 di positivo en la prueba de VIH. Desde enero de 2015, inicié tratamiento antirretroviral y hoy en día soy indetectable.

The 17th December of 2014 I tested positive for HIV. Since January of 2015, I started my antiretroviral therapy and now I am undetectable.

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Desde niño tuve acceso a información sobre el VIH/SIDA (cómo se transmite, cómo evitar la infección, tratamiento, etc). Por ello, cuando mi prueba rápida salió reactiva, tuve una sensación de culpa, de haber fallado: toda esa prevención se fue a la basura. Ahora me doy cuenta que esta reacción tuvo su origen en el miedo. Especialmente, en el temor de lo que fuera a pensar la gente, del concepto generalizado que se tiene de las personas portadoras de VIH, de la forma en la que otros hombres gay se refieren a los que somos VIH+…

Since I was a child I got information about HIV/AIDS (transmition, prevention, therapy, etc). That’s why when the result of my rapid test came out reactive I felt guilty and got this feeling of failing: as if I threw all the prevention away. Now, I realize that my reaction was supported by fear. Specially, the fear of what would people think about me; the general idea about people living with HIV and how gay men refer to other HIV+ gay men.

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Durante estos meses solo he compartido mi estatus con una persona cercana a mí; aun no estoy seguro si quiero platicarlo con mi familia o con amigos cercanos, mucho menos con colegas del trabajo.

During these months, I have only shared my status with one person who is close to me. I am not sure about sharing it with my family nor my friends; I don’t even think about sharing it with my coworkers.

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Nunca he tenido pareja estable. Si la presión que sentía antes por no tener novio era fuerte, después del diagnóstico fue difícil permanecer en calma, pues: ¿quién querría salir con alguien con VIH?

I have never had a boyfriend. If there was a pressure to have a boyfriend before discovering that I was positive, after this I couldn’t even get calm, because: who would like to date an HIV+ guy?

En los primeros meses después del diagnóstico, perdí todo el interés sexual o el de conocer a alguien, principalmente por el miedo al rechazo. Ahora, me siento un poco más seguro, pero todavía con dudas. He intentado salir con chicos positivos, con el fin de evitar de entrada el tema del VIH como tabú. Me he dado cuenta que el tema no es ser negativo o positivo, sino compatir intereses, tener personalidad y un proyecto de vida (*respiro*)

In the first months after my diagnosis, I lost any sexual or dating interest, basically because of the fear of being rejected. Now, I feel a little bit more confident, but still with doubts. I have tried to date HIV+ guys in order to try to avoid the issue of HIV as a taboo in first place. I have realized that it is not about being negative or positive, but sharing interests, having personality and a solid project in life (*sigh*).

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Ir cada mes por mis medicamentos tampoco ha sido sencillo; pedir permiso en el trabajo a veces resulta incómodo, sobre todo porque saben que debo ir por medicamentos, pero no digo para qué. Seguramente pensarán en todas las posibles enfermedaded que podría tener… Pero me veo bien, me siento bien y cumplo mi trabajo, así que adivinar se vuelve complicado para ellos. Yo ya dejé de preocuparme por tratar de armar excusas; simplemente digo que tal día voy por medicinas y listo.

Going every month to get my medication has not been easy neither; asking for permission at my job has been quite awkward, since I told them that I need to go to get my prescription but I haven’t specified for what. I’m sure they might be thinking in many possible conditions that I may have, but as long as I look healthy, I feel good and do my job, it has turned out complicated for them trying to figure it out. I stopped worrying about what would I say every month; I just say I need to go to get my medication and that’s all.

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Tomar dos pastillas todos los días antes de dormir también ha cambiado mis hábitos; por ejemplo, una de las pastillas que tomo me provoca un poco de mareo y ansiedad, por lo que ahora evito salir de fiesta en las noches. Todavía tengo una alarma en el celular, pues tengo miedo de olvidar tomar mi dosis.

Taking two pills daily before going to sleep also has changed my habits. One of the pills gives me dizziness and make me feel a little bit anxious, so I try not to going out at night. I still set an alarm because I’m afraid to forget to take my dose.

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Por ahora, me siento más tranquilo. Sé que aparecerán nuevas circunstancias, personas y retos. No he ido a grupos de apoyo ni terapia psicológica por falta de tiempo, pero sé que eventualmente quisiera ir. Sé que vivir con VIH no es una sentencia de muerte, pero si sé que mi entorno aun es hostil hacia quienes viven con el virus. No voy a mentir: a veces quisiera no ser VIH+. Pero esta es la realidad y debo enfrentarla de la mejor manera. No es sencillo, los fantasmas mentales de pronto aparecen… Hoy por lo pronto, me dejaron escribir estas palabras.

Now I feel quite calmer. I’m aware that there will be new circumstances, people and challenges ahead. For lack of time, I haven’t gone to any support group or counselor; but eventually I would like to try these options. I know that living with HIV is not a death sentence, but I do know that the environment surrounding me is hostile toward people living with the virus. I am not going to lie: sometimes I wish I wasn’t HIV+. But this is my reality and I have to face it the best way I can. It’s not an easy job, sometimes my “mental ghosts” appear… At least they let me write down these words today.

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Fall 2015 Semester Plan

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

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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

The Stigma Project’s “Live HIV Neutral”

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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