Human rights aspect of HIV / Yasin Erkaymaz

24/11/2020 | Writer: Defne Güzel

An individual living with HIV should decide on to whom, when and how to share their HIV status.

In our “AIDS in Syringe” article series, today, our guest is Yasin Erkaymaz. Erkaymaz, who has been doing activism in the field of HIV for 15 years, is also one of the founders of the Pozitif-İz Association. We discussed with Erkaymaz about the transformation in the field of HIV, HIV as a human rights issue, the studies of Pozitif-İz and the importance of solidarity.

You have been in the HIV issue for a long time and you are conducting studies on this issue. What kind of changes do you observe in the HIV issue from past to present?

For 15 years, I have been involved in many HIV studies as much as I can, both individually and as part of the organization. I do not want to provide a pessimistic picture, but I want to evaluate it from a realistic point of view, it is really difficult to do this ... For example, there are more associations working in this field, or those who care about this field. Compared to the past, there are more easily accessible test centers and project studies. Local governments began to provide huge contributions. But lets see that we have yet to come a long way in improving against HIV phobia, discrimination and marginalization. Various institutions and associations have conducted valuable studies on HIV over the years. But this alone is not enough. In my opinion, non-governmental organizations are not the only ones responsible for the things we cannot achieve. The arguments regarding the studies of civil society as if they are false, incomplete and inadequate will be misleading.

The essence of the situation is this; unless the training and awareness-raising efforts of the institutions working in the field of HIV are supported by the state and governments, decision-makers, and unless a specific budget is allocated for these, all the studies conducted, being conducted and to be conducted will always reach some part of the society and will not reach the center of the society. In other words, it is of course important that the state provides free tests and treatment within the framework of healthcare policies, but it is definitely not enough.

It is obvious that there is a big increase in the number of persons living with HIV now. Almost 5000 persons are diagnosed with HIV annually in our country; unfortunately we cannot see any decent training or raising awareness study related to this by any state authority.

You have an association: Pozitif-İz, where persons living with HIV are supported and where studies are carried out on this issue. Can you tell us about the story of Pozitif-İz?

It is an association we have established with our friends who, like me, have personal or organized activism experiences for many years in the field. Sometimes your ideas, perspectives and values start to conflict with those you organized for the same purpose. I think this happens frequently in the field of civil society. We went through such a process and we parted our ways with the Positive Living Association. During our conversations with our friends, we started talking about whether we could form a new initiative. We said, lets establish it as an initiative first. As Pozitif-İz Civil Society Initiative, we started our activities as of October 2016. In April 2018, we have continued and continue our studies by obtaining the official status as an association. Among our members are persons from various professional groups, including doctors and academic staff.

Pozitif-iz has been continuing all its activities on a voluntary basis since 2016. Our aim is not to grow and be a huge structure. That is to say we are not aiming to grow and employ many persons, earning a lot of money, trying to do everything, we do not have such a mission. We want to have concise yet complete studies in which we can touch and change someone’s life. We say yes, we are doing the right thing when we are able to empower the persons we touched and help them to regain the self-esteem they thought as absent. I think feeling this is the maximum available gain for us.

What kind of studies and activities are you conducting in the field as Pozitif-İz?

We attach great importance to being with persons diagnosed with HIV at the time of the first diagnosis, trauma and shock process. Because it is very important for the persons to reach support about what they feel in embracing the situation at the initial stage, what they will experience and how they will cope with their concerns for the future.

They receive this support from our friends who are specialized in the field and have worked as peer counselors for many years. In this sense, they communicate us through a support line and by reaching us from our social media accounts. In other words, peer counseling is one of the fundamental studies we made.

In addition, we organize capacity building trainings for those living with HIV in order to increase their knowledge and experience on HIV. These trainings contain information about the medical dimension of HIV, its treatment, healthy life and nutrition, social status, and the legal and bureaucratic rights. This information is provided by the experts of the issue. In other words, the persons completely eliminate the misinformation they acquired in the past about HIV and rebuild their thoughts about HIV with the correct information. These trainings provide persons living with HIV to realize how little it affects their life and the flow of it and make them be on the track with the same belief for the goals they want to achieve in the life. In other words, these trainings make it easier to accept that they are “normal” and not being different from anyone. To sum up, the reasons for the existence of Pozitif-İz is; to provide counseling services to HIV-positive individuals and their relatives that they may need by providing updated and accurate information on the subject, to empower them regarding their rights, to improve their skills on living with HIV, to increase the solidarity between HIV-positive persons and their relatives, to raise awareness about HIV in the society and to conduct studies to eliminate discrimination and stigmatization.

What kind of studies Pozitif-iz hopes to conduct in the future?

Our goal to ensure the sustainability of the counseling services that persons living with HIV and their relatives will need will always be our priority.

In addition, we have the idea to provide organizational trainings to civil society professionals in order to raise the awareness of all civil society in the field of HIV. In other words, all our studies is counseling and training oriented. We want to use trainings to raise awareness, and to use this raised awareness to eliminate prejudices.

We want to improve the knowledge of persons living with HIV and their relatives as well as of all the institutions that need to have accurate information about HIV such as the ministry of labor, the ministry of family and social policies, the ministry of health, national education, etc.… In short, we want to ensure that all official institutions that serve persons, universities, young persons and all segments of society to be informed.

How is Pozitif-iz’s political stance on the HIV issue shaped?

We think HIV is a human rights issue. We know that labeling and stigmatization are the basis of all HIV-related discrimination. HIV is not a problem of a group or a situation. HIV is a health condition that any member of this society can face one day. Yes, some persons may be more vulnerable and susceptible in terms of being affected by HIV, but that does not make HIV specifically their problem.

We argue that political correctness is also important when talking about HIV. In other words, the language used in explaining HIV, the arguments chosen and the examples given can create the phenomenon of over-egg the pudding. When you want to say something good, how you express it can be more important than what you want to say. An individual living with HIV should not be deprived of any rights that other persons have in terms of fundamental rights. In other words, if the rights of the person such as the right to treatment, education, right to work, right to life are violated on account of HIV status, it should be the whole society that raises the voice up. When there is an issue against you that need to be defended, so as not to be alone, you should do it.

What is your main motivation for you to concentrate on and work on the HIV issue?

“I am HIV positive. I have an HIV positive wife. I learned that my mother is living with HIV. My partner is HIV positive. My brother was diagnosed with HIV. I had HIV positive partners. My best friend had an accident, but could not undergo a surgery and died because the HIV test was positive before the surgery. I attended a seminar on HIV and because I was surprised by the discrimination experienced, I wanted to do the advocacy in that regard”.

Any of these sentences can be my answer. I think it was a very “political” answer. Actually, the answer I will give to the question of what my motivation is does not matter. The important thing is you determine what you can do in your own circumstances. You may want to step back and hide what you have experienced, forget what you have heard, and cover up your facts. Or, on the contrary, you may want to share your feeling. You may want more persons to learn the information in the seminar you attended. For example, you want to encourage the person who learns about the mother’s HIV status so that that person can hug the mother firmly ... In other words, every person who are in and works in this field sincerely has a motivation. I think none of us woke up one morning and said lets work in the HIV field.

There are millions of things that need to be done and change in this country about HIV, and a lot of work needs to be done in areas such as prevention, support, awareness, and training. There is zero government support and very few persons to do these. Few persons take steps to work in this field. There is a need to see more persons in the field and be part of change. I can say that reminding others that they need to take a step for this, encouraging them, and then seeing that I have gained new companions satisfy me regarding that I am doing a good thing.

Recently, the discourses on HIV have increased. How do you evaluate these recent HIV discussions?

I guess you mean the heated debate about whether to share your HIV status or not. Frankly, I think that an individual living with HIV should decide on to whom, when and how to share their HIV status. For example, let me explain my thoughts based on the opinion that HIV positive persons should share it with persons they will have sexual relation, I think it will be more clear by this. There are two persons in favorable conditions and they will have a sexual experience. Whether or not sexuality is experienced safely is a decision they can make of their own free will. If both parties wish to be protected, then they are protected. If both parties are not protected by their own will and if there is an infection transmitted from one to another, including HIV, the person having the infection is not the only responsible party. If both parties did not enjoy their right to be protected, both parties are responsible for the health condition that could change. Then the argument regarding the HIV positive party knows the condition immediately is raised ... What about the other party? Has this person been tested regularly? When was the last time this person got tested? Has there been any unprotected contact with another person after the last test? At that moment, can or will that person be able to declare to be negative by being sure one hundred percent?

Moreover, in our era, we have a scientific fact like the situation of “Undetectable=Untransmittable” [1]. In other words, do you think that it is fair to expect the other party to disclose themselves as “this is who I am” to protect yourself? If you want to protect yourself, you will undergo regular tests, you will not have unprotected sexual intercourse, you will have a general knowledge about all sexually transmitted diseases, because you are the one who will protect yourself.

The asymptomatic period of HIV can last for many years, so the person may be living with HIV but may not be aware of it. For this reason, it is the responsibility of the persons to protect themselves. So someone who is getting HIV treatment and explaining the situation to you is one hundred percent safer than someone who has never spoken or talked about HIV. Of course, what the word trust means for the person is also important here. We can talk about this for hours, but I can briefly summarize it like this.

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

I have a kind request from those who read this interview. I wish them to notice HIV. Because HIV is a matter of all persons and it is not far from any of us than anyone else.

Tags: human rights, health