By Miquel Caballero

A few months ago, Mariana Iacono gave us a few tips on how to go down on a woman with HIV. “Before you lick the vagina, touch it everywhere, inside and out. Drink her milkshake, eat her out.” she told us in an article that went viral. It wasn’t the first time she was talking about this subject: Mariana has spent over a decade fighting for pleasure as a human right for all women, particularly those who are HIV-positive.

In 1999, the World Association for Sexual Health issued its Declaration of Sexual Rights.  The text was revised in 2014, and lists sixteen rights, the seventh being:  “The right to the highest attainable standard of health, including sexual health comprised of pleasurable, satisfying and safe sexual experiences.” Pleasure, satisfaction and safety are terms that HIV positive people have to constantly negotiate and fight for, even more so in the case of women.

What are the impediments to pleasure?  “On the one hand you have external censorship, and on the other, internal censorship,” says Mariana.  “There are many people who say that HIV positive people should abstain from sex.”  Today this does not make any sense; there is no scientific basis to this statement, only the fear we’ve inherited from the past, when it was not yet known how the virus was transmitted and there was no effective drug treatment.  But in addition to this, there is an even worse repression:  “Self-censorship. To reach an orgasm, and then feel the frustration of not being able to experience this without a condom with my partner, it stripped the act of all eroticism, it made me want to cry. And when you are not open about your status with a lover or one night stand, the spectre of HIV overshadows the sexual pleasure.”

"Pleasure, satisfaction and safety are terms that HIV positive people have to constantly negotiate and fight for, even more so in the case of women."

Mariana Iacono was born in La Boca (Buenos Aires) Argentina and lives in Brasilia. She is 33 years old. She was infected with HIV at age 19 and diagnosed at 20. At that moment she began a long personal struggle to reclaim her sexuality. “I spent 10 years without oral sex. My whole youth without oral sex, can you imagine that? I spent a year without sex, and it took several more to rediscover the pleasure in it.”

Mariana has been undetectable since the start of her treatment, which has always worked well for her.  She continues to take the same medication that she started with thirteen years ago. Today, the most advanced research says that one of the most effective methods to prevent the transmission of HIV is TasP: Treatment as Prevention. So what does that mean?  That while the infected person remains on treatment and maintains the status of undetectable (i.e., their viral load is below the level that tests can detect), the virus is not transmitted. Studies are still ongoing, so the findings are not definitive, but the results we have so far, after years of research, point in that direction: a case of HIV transmission from an undetectable patient has never been registered.

(For the most up-to-date research, click here.)

The right to pleasure, which sounds like a fabulous right, has always been controversial, even questioned by some sectors of feminism. They argue that this right, in the context of a sexist society, is generally used by the heterosexual man to demand that the woman submits herself to the man’s sexual needs.  Now, to counter this, the movement is to emphasize and defend every day the right to pleasure for the woman. This is very complicated in the case of HIV-positive women.

“I think it’s important to talk about sex. That we can have sex with someone whom we really desire, that we can give and receive oral sex, that if we have an undetectable viral load we can have sex without a condom with our partner.”

Mariana shared some examples of the difficulties she has herself experienced:  “I had a lover in New York for a few months. When I told him I was HIV positive, he said he would shoot and kill me.”  No wonder, I thought to myself. That is the result of outdated laws that are the accomplices of stigma.

HIV positive people do not hide our HIV status because we secretly want to infect someone.  We hide it for fear of physical violence, such as the experience described by Mariana, or emotional violence, like the host of stigmatizing attitudes that may arise in situations like this. I repeat: there is no scientific basis for claiming that we put anyone at risk.  Generally, seropositives are very conscious of taking care of our sexual partners.

What do women with HIV want to talk about today?, I ask her.  “I think it’s important to talk about sex. That we can have sex with someone whom we really desire, that we can give and receive oral sex, that if we have an undetectable viral load we can have sex without a condom with our partner.  We need to talk about the fears of heterosexual men, because they are always the most difficult to address.”  If misinformation still runs rampant within the gay community, I cannot imagine what level of knowledge heterosexual men have of HIV. What do they fear?

“For example, a boyfriend never introduced me to his mother.  He also asked me not to add him on Facebook. He was bothered by what his mother and his family would think.   In another relationship, I felt that my boyfriend’s mother  was upset that I was with her son because of my HIV status.  She told me that my boyfriend  had had psychotic episodes because of my diagnosis. It is a very complicated issue; the fear of one being discriminated against because their partner has HIV, or because other people may think he or she also has HIV.”  These reflections of Mariana are very familiar.  Before I told everyone that I was HIV positive, I sat down to discuss it with my husband, because I knew that by revealing myself, it would also bring him attention and scrutiny. His HIV status, our relationship, our intimacy would be questioned.

Mariana identifies herself as feminist and will soon resume her work as a social worker in the Argentine education system. She also is a staunch supporter of Boca Juniors. She has a long career as an activist: she is the founder of Red Argentina de Jóvenes y Adolescentes Positivos  (Argentina Network of Youth and Adolescent Positives) and J+LAC Red de Jóvenes con VIH de América Latina (Network of Youths with HIV in Latin America). She is a member of the Comunidad Internacional de Mujeres Viviendo con VIH/Sida (International Community of Women Living with HIV/AIDS), ELLA – Encuentro Latinoamericano de Mujeres (Gathering of Latin American Women), Facción Latina (Latina Faction) y Cultura en Red (Net Culture). I recommend that you follow these organizations on their social networks and respective websites in order to be informed of what is happening in the world of feminist activism and HIV in Latin America.

"Fear, which is also human, is cured with information and without prejudices."

Since being diagnosed at just 20 years old, Mariana has gone through many phases: “After my diagnosis I spent ten years in the gym lifting heavy weights, afraid of lipodystrophy and seeing myself become physically frail.” Relationships continued to be difficult: “Once a man spent several months trying to get me to go out with him.  Finally I accepted and told him I had HIV.  On our second date he told me I seemed too interested in him and it would be better if we did not have sex because he didn’t want to hurt me. I had another boyfriend who for years never gave me oral sex. One wonders if these guys were just like that or if it was the HIV.”  You can imagine the exhaustion that must come with ten years of being exposed to others’ fear, the idea that you as a seropositive can and should put up with any type of discriminatory comment because we have to understand that others are scared of us. Nope. It’s very basic, but sometimes you have to remember that we are humans. Fear, which is also human, is cured with information and without prejudices.

With her current partner, her husband, she agreed on their methods of prevention using all available information. Like many discordant couples, they use TasP. This advance is a great victory, Mariana says: “The first time I had sex without a condom was with him. It happened after eleven years of having sex only with a condom. Imagine, for me it was abnormal, it was strange the first few times, a strange interaction with semen, uncomfortable. Before my diagnosis, I had only had sex without a condom twice. I wasn’t even 20 years old. Now, after 30, I could have it back. It was a new world."

This article was originally featured in HIV= on April 14th, 2016, here. Para leer este artículo en español, da clic aquí.