29/11/2020 | Writer: Defne Güzel

Those living with HIV exist. They are living, are hale and hearty as everyone else, they are not dying and they are here. Those living with HIV have their own organizations, their own policies, and their own words. Those living with HIV are seeking their rights.

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I remember the times when I was a young queer. You know that these are the hardest times. I needed an inspiration more than anyone else. I had to create the motivation to be resilient, to struggle, to be able to come round. For this reason, I have been in search of that for a long time. Really, where would the inspiration be found? If found, how would it be used? Songs, poems, idols ... None of them helped me.

One day, suddenly I caught a lucky break. Sorry, I should have said a lucky period. I found the inspiration I was looking for from a period, neither from a song, nor a poem, nor an idol. My inspiration was a period. By its full appellations; the 80s!

The eighties helped me to come round. The eighties made me a rebellious and free girl singing on the shoulders, with hair curlers wearing a jacket with shoulder paddings.

While writing this article, my motivation and inspiration are again in the eighties. How cannot we talk about the eighties when it comes to HIV? This was a period where persons living with HIV stood up, protested against pharmaceutical companies going hand in hand with the LGBTI+ movement. The eighties refer to the famous “AIDS crisis” that gives everyone goosebumps and bring a lump to their throats.

Of course, such a process was not in Turkey. The spirit of rebellion was not observed. Persons living with HIV in Turkey could not raise their voices up. Those living with HIV were not spoken. HIV in Turkey was discussed as a healthcare policy. For years, “How can HIV be prevented? How to use condom have been on the agenda. Healthcare studies to protect HIV negative persons from HIV were carried out. Those living with HIV were exposed to discrimination, violence and hatred. None of them were on the agenda.

Something happened in between this ambiguity. Something challenged the flow. In December 2019 a discourse was built: “I do not have to share my HIV status.”

While this discourse of the Association for Struggle Against Sexual Violence created chaos in the society, it has empowered me like never before. A discourse was produced by centring the subjects. The rights of the subject are respected. For my rights, a policy was created from my language. Something happened as in the 80s, but nobody died.

While those living with HIV were pushed into ghettos for trying to keep the world sterile, this discourse provided another field to those living with HIV. Considering that the queers are in the center of those living with HIV, a lot of queer things happened that day.

A lot has happened since the eighties. HIV has changed a lot. It became undetectable and untransmittable by taking one drug a day. HIV has ceased to prevent working, having children, having sex and living. It became a chronic health condition. But while there are scientific developments, discrimination and hatred have never changed. What if these developments did not exist? Nothing can change the fact that HIV is a human rights issue no matter what. Nothing can change the fact that those living with HIV cannot come out and not be recruited; they are disclosed and subjected to violence.

There are some discourses that I cannot refrain from using at every opportunity:

Those living with HIV exist. They are living, are hale and hearty as everyone else, they are not dying and they are here. Those living with HIV have their own organizations, their own policies, and their own words. Those living with HIV are seeking their rights. They struggle with discrimination and hatred in order to continue their lives in the normal flow. They want everyone to be able to access updated information and to get rid of the social crisis upon them created by society, the media and fear.

Persons living with HIV do not have to share their status with anyone; neither with the doctor, nor with the nurse, nor with the partner. It is the responsibility of the individual to learn and apply methods to prevent HIV transmission. Persons living with HIV shall not be held responsible to nobody; they are no more dangerous than anyone else just because they live with HIV. Instead of bullying that persons living with HIV to share their status, it is much more meaningful to create safe environments where persons living with HIV can easily come out.

HIV is the issue of everyone. Those living with HIV are not an issue. The issue is the high cost of condoms, incomplete government policies, and the absence of inclusive policies for pills (PReP-PeP) that eliminate pre-post exposure.

Condom does not only act as a barrier to HIV. Condom is also a birth control method. The use of condom in a relationship is a decision to be made by the parties together. One party has no more obligations than the other. At this point, it is not an irresponsibility not to use condoms. Persons can knowingly and willingly become infected with HIV as a result of certain decisions. Anyway, HIV-positive persons are not persons who are punished for their irresponsibility.

If you want to do something about HIV, you can start by listening to the stories of persons living with HIV with an inclusive attitude and language instead of discriminatory attitude and language.

I have spent four years with HIV. At the end of these four years, a discourse, a friendly opinion, solidarity, a moral support gave me the power to say these things and work for the policies on what I said. It is not just about paying lip service, but about the world I want to provide to those living with HIV.

If my inspiration was the eighties and if the eighties were inseparable from HIV, then I would like to conclude by borrowing the words of Freddie Mercury:

“Inside my heart is breaking, my make-up may be flaking, but my smile still stays on.”

Translation: Özge Gökpınar

Tags: human rights, health