05/01/2021 | Writer: Defne Güzel

Our guest is Yunus Emre. We discussed with Yunus Emre, who is an activist who fights for the rights of persons living with HIV and LGBTI+ persons, about living with HIV, violations of rights, perspective on HIV activism and discrimination.

HIV policy for those living with HIV / Yunus Emre Kaos GL - News Portal for LGBTI+

You have been in the HIV movement for a long time and you are doing activism both in this field and in the LGBTI+ movement. Why did you choose to come out? What did coming out make easy or difficult in your life?

In fact, I have been living openly for two and a half years in my daily life since I was diagnosed. Places I call my daily life is; my circle of friends, the environments where I am in politics, sometimes social media, sometimes the environments I work in, my partners but not always, some parts of my family...

Actually, I was going to be in this interview with an open identity, but I will mention the reasons later why I could not. I have two main motivations when coming out to my close circle. One is to make this policy; the other is to be in contact with persons who will support me when I am discriminated. At the same time, some persons have a motivation to protect themselves if they do not come out. Therefore, where, to whom and how you come out can be determined by a lot of self-protection reflexes. I am not at the point of being one hundred percent open during this interview. At least I will be in this interview without a photo as we discussed before.

As for the question of what coming out makes easier in my life, I will explain this from a very personal point. It does not have to be that way for everyone. When I shared my sexual orientation, being able to talk to someone about it enabled me to get stronger against the social pressure over me. Being able to express my orientation in public has made me stronger. At the same time, this situation started to strengthen not only me but also the persons around me.

As for the question of what coming out makes difficult in my life, I also had the same motivations when I came out as bisexual again; for doing the politics and protect myself against discrimination. When I see any negativity, I stay away from that person. In something negative about HIV, I do the same. If this person is open for a change, I talk with that person for ensuring a change. There were no adverse situations during my employment process, but like many persons living with HIV in the future, I may face these discriminations, but I believe that I will get stronger from these processes thanks to the persons I struggle and socialize together with.

Beyond HIV-related healthcare policies, you adopt an updated, rights-based and subject-centered activism. What exactly was the process that motivates you to do this kind of activism and actually do activism?

There are two hierarchies in the HIV issue. One is the hierarchy established by science, the other is the hierarchy established by money. Healthcare professionals and doctors have a huge hierarchy of information on their hands, and it is very up to them to share it with us at what point, as in any health-related issue. At the same time, funders, including pharmaceutical companies, have a lot of say in this area. They steer a lot of policies, and unfortunately, healthcare professionals and funders do not have a very rights-based perspective.

Who makes the policy is very important here. Who holds the information, the money. The more subjects who do these things, the more it shifts to a rights-based axis. Lawyers and legal practitioners have started to produce a lot of discourses, especially with the recent HIV discussions. The information hierarchy started to raise from that side as well. These are all important, of course. The presence of lawyers, funders, pharmaceutical companies and healthcare professionals is very important, but they are very determining who is the main factor in the field. Currently the main factors in the world and in Turkey having the information at hands are the persons holding the money. Since activists, as in all fields of advocacy, have no resources, they have to obey to some extent whatever the funder says. This is not specific to HIV.

My own political point envisages a rights-based activism that centers the subject in the field. In addition, when I look at everything I encounter in the field as a subject, I see a great axis in between, that is, when I put aside the problems faced by me and the persons around me or the advantages they have, there is a huge axis in between. This axis is centring the rights-based subject. HIV policy is not conducted for HIV-positive in Turkey, rather often for HIV-negative persons unfortunately. Motivation is HIV negative persons and the HIV policy is developed for them. This situation does not seem reasonable and fair to me. Yes, sexual health is an important topic, all human rights institutions should center this, but the center of the institutions working with HIV should be those living with HIV. The decision makers and who are employed should be those living with HIV. In all of their projects, they should produce policies that focus on persons living with HIV. By noticing this axis, I start to be in this kind of policy making.

In the “HIV and discrimination” workshop organized by Kaos GL, you said that you could not organize in HIV organizations. Are these policies the reason of this?

There were activists living with HIV, HIV associations, some doctors and LGBTI+ activists in that workshop. What I said was not confidential. I can also mention here. Most of the institutions we are talking about are old and well established, the institutions that came out of Positive Life Association. At this point, the language they use does not include me. I cannot embrace that language. On the other hand, as we have just mentioned, in these institutions the studies on HIV are not conducted by the subjects themselves. Even if the subjects do it, the motivation of the institution also changes because the motivation of the funders is very different. Therefore, there is no study there that centers the subjects.

I think this; for example, an association running an HIV test campaign. I am not saying that an association cannot do this, but a HIV association cannot provide test counseling without taking PeP and PrEP on its agenda, without saying U equals U loudly, and without hardworking to report discriminations against persons living with HIV.

Test campaigns are included in policies produced for those living with HIV since if the probability increases, there may be difficulties in accessing healthcare services, and therefore in order to ensure new diagnoses should not be prevented, those are conducted. At the same time, diagnosis is important for those who do not know their status to access healthcare services, but I think it should be done step by step.

We do not know the discriminations experienced by the persons after the diagnosis. The persons may have difficulties in explaining the discriminations they experienced and persons who have already been diagnosed may have difficulty in coming out. And yet, we cannot say, lets get your diagnosis first, we will look after that. These are policies that should go hand in hand. Policies’ priority should be advocacy, even if they cannot do that. We do not become an HIV association when a policy is made just because funds can be found in this field. Sorry but, we then be a policy-making association for those who do not live with HIV. For these reasons, I cannot find a space for myself.

Speaking of recent discussions, do you have to share your HIV status?

I do not have to share my status. Sometimes I share it, sometimes I do not. If I do not feel safe somewhere, I do not share my status. When someone living with HIV does not share their HIV status somewhere, it could be a bedroom, a workplace, a school, a house shared with roommate, with the persons where they organize ... If the persons cannot explain their status to the persons there, it is not because of that persons themselves. Here these should be considered; that environment, that workplace, that school generally cannot provide a safe environment for that person to come out.

We cannot come out everywhere. When a person cannot come out somewhere, we should look at the structures that determine the dynamics of that environment, the personal process of that person until that moment, what was experienced in that place, what was experienced with the persons around. These are all important factors. So I do not have to share it. Why did not you share? I am not the person shall be asked this question. If this question is to be asked, it should be asked to other persons in that environment. Is this area a safe area? Are you a reliable person? Should be asked. By the way, although the area is safe, I do not have to share it. This is my personal situation.

How do you combat the discriminations you face? What is your motivation?

Not only on account of HIV, but when I experience the discrimination, I look at the situation of the perpetrators. If they are aggressive, I also become aggressive. If they are very calm, I can be aggressive. I cannot promise that. I try as calmly as I can and try to transform them, if I cannot, then I try to forget about it. I am gaining this characteristic step by step. There were also processes that I was very obsessed with before. For example, when I am not the subject, I can raise up my voice much more. I am not sure if it is a good thing, a bad thing or if it is politically correct, but when I am the subject, I take steps to let go, while the subject is someone else and there is a claim for solidarity, I can take a little more bold steps on this issue.

What do you think about the HIV discussions that you were actually involved recently on social media?

Not once did I doubt that I was right in the discussion. Because as a subject, as a subject organized in the field, I know that most of the persons there are not the persons organized in the field, are persons who have not experienced any of them, swaggering from their cis white environment, they do not know what does it mean to approach based on rights, what it means to be a subject, what privacy means, what it means to be exposed to discrimination. They just provided a few, perhaps bogus, unlawful arguments. They mount ancient arguments that they thought were scientific. Sometimes they just discriminate. Sometimes they provoked persons with false misinformation based on their academic identity, as in the TERF discussions. Indeed, all those who attacked HIV activists at that time were worthless persons. When we came face to face, they were just persons who would never have had this self-confidence without the power of social media behind them.

There were parts that are devastating for you, for me ... But I saw that we got out of there by getting a little stronger. I think it is important to turn such processes into opportunities. It was a process in which we cooperated with each other a little more. In other words, it was a difficult process, it may not be livable again, but we got stronger due to this. There have probably been persons living with HIV who could never participate in the discussions. I hope this process was not harsh for them either.

The main determinant of these discussions was that; we realized that we were not in the same atmosphere with the persons we encountered on social media. The reason we are not on the same axis is that those persons are not considered the issues in the same way we did while making policies. They do not produce policies anyway. They do not know what politics mean in their daily life. They do not know what the political position we have means. We cannot teach them anything, even anything in any language, about the things we talk among ourselves. Therefore, my expectation from such discussions is not that “these persons will transform”, on the contrary, these persons will remain like this, but both the HIV and TERF discussions clarify the stances within the political movements, their true colors are pointed out. And that is a good thing. Also, getting together and getting closer are increasing.

Finally, is there anything else you would like to say?

We talk about the discrimination faced by persons living with HIV, the rights they cannot access, but we forget a right. The right to assembly. As a person living with HIV, I personally promise to work a little more to gain this right. I hope that the grounds for those living with HIV to organize and produce policies for those living with HIV will be formed. I hope that the groups and initiatives that center the subject increase and multiply. I personally have been striving for this with the persons around me for a while. I hope we can see the outputs of this soon. I hope other persons will start working for this, maybe on the same platforms, maybe on other platforms. I hope the number of us can increase.

HIV policy is changing now. Policies on rights produced in the world are changing. Policies are changing. HIV policy is changing from another perspective. The issue has ceased to be a medical issue. HIV is now a social issue. It is a rights-based issue. Therefore, I hope that the number of organizations working directly on the basis of rights increases day by day.

Translation: Özge Gökpınar

Tags: human rights, health