Already for almost 20 years Olesya Kurkina lives with a diagnosis that was recently considered a disease of the “scums” – drug addicts and alcoholics, and the very abbreviation of which makes many people change their attitude towards the carrier. HIV-positive Olesya helps the people in the same situation do not just accept their illness, but also to return to a happy life, however difficult it may be. She pays special attention to children. Olesya’s most important dream is to open centers of mutual aid throughout the Primorsky Krai, where not only positive, but also healthy people will come, ready to provide support. Ussuriysk city has an urgent need for such a group.
Olesya told in an interview with UssurMedia agency about discrimination of HIV-positive people, about their rejection by society and children who feel themselves unwanted in this world.
– Olesya, you work in the AIDS Center pro bono, you meet with patients and support them. What does this mean to you either?
– People who get into the AIDS Center, may enroll in the mutual help groups which I hold, study the Constitution, the declaration of the rights of a person living with HIV. Of course, there are drug addicts and alcoholics among them. We let them know that because of people like them, society is generally negative about all HIV-positive people. We are struggling with this.
We give psychological support, partly financial, material support of any nature, be it things or food. Our doctors are very interested in raising the standard of living of every person with HIV.
I would like to ask people to be humane in any case. Perhaps there is an HIV-positive person in your environment …
Now this is not a disease of drug addicts and prostitutes. I really wanted that humane treatment to such people would be maintained. No one knows when and where they can stumble and fall.
We will hold a summer camp for HIV-positive children in September. About 50 teenagers will arrive with their parents or guardians. Why this camp? Children as individuals must take their place in society. We all have children; we care for them very much. But we do not know how their life will develop in the future.
To prevent terrible stories in the process of growing up our children, we would want every parent to have clear understanding: if we are helping those who stand on the edge of the abyss, we are helping our children.
This is the boomerang principle: what you hurl, will return to you. Children are not to blame for bearing the cross of their parents. Basically here are situations of innate infection. These make my heart bleed. There are examples when the children said: “My mom and dad died of an overdose on my eyes”. Can you imagine what kind of life such a person has? It is ruined. The do not have proper understanding of the reality, do not have a vision of the world. Once we had a case, when grandmother said to her grandson: “You should not take pills. If anyone finds out, they will kill you”. What is the way out for them? And there are embittered children from correctional schools. They have a little different mindset. They depend on how society starts to pressure them. We do not know what can happen next. I know a lot of people who said that they had interruptions of therapy: “If I am refused the therapy, I will infect everyone”. Imagine how many of such people are there? It’s scary to think about it.
When I first came to an orphanage and communicated with a young man, he had three words in the lexicon: “yes,” “maybe,” “I do not know.” He used “yes” extremely rarely. I heard this only once or twice. That is, discrimination and personality infringement are so heavy upon these kids. This is a psychoemotional disease. Knowing about this diagnosis, a person puts on a mask. He thinks he’s not like everyone else. Nobody needs him. Society dumped. They are not admitted to the hospital or a resort facility. Teachers shout at them for no apparent reason. It causes low self-esteem, poor school performance, lack of personal relationship.
In fact, it is very sad. In the Primorsky Territory are 109 children of different age who want and are waiting for help, they wish the society would accept them.
Therefore, my goal is to establish the mutual aid group throughout the Primorsky Territory. I’m looking for like-minded people, healthy people who have nothing to do with the disease, so that they stop being afraid. HIV is not transmitted through airborne mode; the virus lives only in a person’s blood.
– Is your story a secret? Why did you start helping people?
– I have been an HIV-positive person since 2001, I was registered then.
I’m a former drug addict. Do not be surprised. Everyone asks me a question, “You probably have two higher educations?” No. Officers brought me my school graduation certificate to the court. I was unwanted in the society. Anyone who did not like by my behavior or attitudes, could offend or humiliate me.
At one point, I realized that I did not want to live like this. After a while, I was diagnosed with HIV, which I was already ready to hear. It was 1999. My addict friends began to die, 5-6 people passed off a day. The diagnosis was not yet determined, because people do not die of AIDS. AIDS is the final stage. You can die from concomitant diseases: cirrhosis, candidiasis, tuberculosis. HIV progresses into certain stages, similar to cancer cancer. And AIDS is the last stop. This is an irreversible process. I remember drug addicts were even given free condoms in the AIDS Center, there was syringe exchange to curb infection spread. But this was difficult to fight, because a synthetic drug was imported from China, which was easily accessible.
I knew that if I continued to take drugs, I would simply die, like the many who died before my eyes. It stopped me. My personality was crushed with my own actions. My daughter was brought up by my mother. I understood that no one needed me, I started thinking of suicide because I was tired of what I had done, that I was bringing pain to my relatives. I tried to stop, change my place of residence, leave … But periodically I returned to the same place. I met a man who made me pregnant. I continued to inject during pregnancy. I know approximately at what time I got infected. I was not registered in a maternity clinic, because I felt that I was not a person like everyone else. I’m a drug addict, and this is my failure.
I appeal to all pregnant women: please, have responsibility for the baby you are bearing, this is your child.
After the birth of my daughter I began to contact the doctors. In my work I pay more attention to children. Because they are the ones who will live after us. We do not know what will happen next, whether the infection will be eliminated, whether it will progress, or choke the whole world. It’s so frustrating that we, equal citizens, who can give birth to healthy and happy children, are treated like this and face such a prejudiced attitude…
– Do you now help people from a public organization?
– I am a member of Vladivostok youth public organization “Life”. Yelena Voitovskaya is its chairperson, she is a psychotherapist of the regional AIDS Center. She organizes trainings and supports people diagnosed with HIV. She works with children a lot. I wish that there were no such children … There are AIDS dissidents who do not believe in HIV. Upon giving birth to healthy children, they begin to breastfeed. After 3-4 months, the diagnosis is confirmed in children. We are countering such people. For this purpose, the organization “Life” was created. We have an organization for social and psychological assistance “Granat”, of which I am also a representative. We will open a branch in Ussuriysk so that we can create here a group of mutual assistance for both adults and teenagers.
– That is, in Ussuriysk there is no such organization that would bring together people living with HIV and AIDS?
– In Ussuriysk there are not even people who could flock together a group of teenagers. Several years ago I came to the city and organized a mutual assistance group. But then the woman who was curating the organization moved to Korea. Everything was abandoned again. This year we decided to start again.
I appeal to the Ussuriysk administration with a request for support: we need a place where confidentiality could be maintained. I do not rule out the possibility that, after my media appeal, one of the HIV-positive residents of the city will want to disclose their status to overcome their fears and be a full-fledged citizen.
I remember a few years ago an article with my photo and with my story appeared in the newspaper of Artem city. At first I kept looking around while walking, because I was scared by the reaction of people, all my relatives turned away from me. But time passed, they asked forgiveness, they accepted me as I am. And all my fears faded away. It gave me strength, confidence. Moreover, now the Artem city authorities support our activities, and it is so wonderful that it gives us the strength to go further. We received premises, time to hold sessions, it was our opportunity not to be isolated. We are not afraid that someone will know that we are going to be here. We are under the protection and safeguarding of the state.
– Are similar support groups that would be under the protection of the city authorities planned to be organized in Ussuriysk?
– Of course. Raising the self-esteem of each person, we give a 100% guarantee that he will bring 100% benefit to his state and directly to the city in which he lives. Groups of mutual assistance are organized throughout Primorsky Krai: in Nakhodka, Partizansk and in the Bolshoy Kamen. The problem is that we do not have premises and like-minded people. After all, communicating with healthy people helps to fight discrimination. When they come to our meetings and say: “We just want to support you and be with you. We want to know how you live, how the therapy works for you, what side effects do you have, how to support you. And we want to help you be joyful”, it seems like attitudes are changing.
I would very much like to achieve more, organize the patient control similar to the one which exists is in the central part of Russia, when the statistics of HIV-infected people are kept. It happens that they are “juggled” from the doctor to the doctor, do not have the opportunity to take full-fledged treatment, cannot get examined, which is very bad for the quality of life. We would like to have such control in Primorye so that we can defend our rights under applicable federal laws that exist and operate in the center of Russia.
– Do I understand correctly that HIV-positive people do not know that it’s a healthy person next to them?
– Of course. This is all confidential.
– And they can get to know each other in this organization?
– It’s not an organization.” This is a self-help group. Initially, we work individually with each person.
– How do you find out about them?
– In the AIDS Center. I am at the reception on Mondays. Doctors refer to me people who need emotional or any other support, those who have problems in therapy, those who are in denial of their diagnosis, people with suicidal thoughts and so on. I meet with them. I present my personal example. A peer consultant is a person who lives with a diagnosis and has an extensive life experience. I was convicted, I was a drug addict. I have experienced it all. When they say, “I have a large dose. I cannot quit the drug”, it’s all nonsense! I do not believe in it and I speak openly. A person sees that I ty to gain their trust and I do not lie. And a person gets enthusiastic to become a full-fledged citizen. And when I tell that I communicated with Vera Brezhneva in Moscow, it’s very touching for them, they would ask, “But how?!” My former drug addict acquaintances who were still alive say: “It’s incredible. We do not believe it”. They knew me at my worst years, and now they see an absolutely different person. A person can overcome everything. It is necessary only to have will. We are the people who want to help.
– Is the number of infected people growing in the Primorye Territory?
– It depends on the district and area. Somewhere it settles, and somewhere it starts to grow. In any case, it is generally increasing.
– Previously, HIV was considered the disease of the addicts, but it is now spreading in the socially adapted categories of citizens?
– Yes, I say that no one is immune. I call on to the public to be aware. Today we take no responsibility for ourselves. We trust our sexual partner and we hesitate to use a condom because we are afraid to show our partner that we might have doubts in them. And we do not think of our safety at that moment. And then who is to blame? We are. It’s we who chose not to use a condom. And then we think that everyone is wicked except for ourselves. How did it happen? We trusted anyone but ourselves. A HIV-positive person does not have their status written on their forehead. There are no distinguishing marks, seals, birthmarks.
We work with adolescents who have acquired HIV during their first sexual intercourse under the influence of alcohol, a light drug, a stimulating cocktail. In a relaxed state, adolescents are not conscious of themselves, they do not think about the consequences of unprotected sex.
I think the problems are rooted in the family. Without receiving the necessary information, nor the necessary care, children go to the street and look for their own kind. And they are very easy to find. So it happened to me: sometimes the family did not understand me, sometimes they blamed me. I was offended because I did not get scolded before, as they had no time for me. And now parents either hang on in the Internet, or are head to toes in work, and children are left to themselves. Such a situation is not likely to yield anything good.
I know a woman whose husband dies from the consequences of HIV, but she does not want to believe in it, denies it, saying “He was not cheating on me. Where did he get the disease? He’s not a drug addict”. This is the problem. And she herself denies her illness.
– Are patients complaining about discrimination in Ussuriysk?
– I don’t know the situation in your city. Patients complain everywhere and for various reasons. Somewhere patients can themselves attend the doctor under alcoholic or narcotic intoxication, or demand attention too much. For example, we are sitting here and having a good conversation. I’m a normal person. You treat me normally, because I’m getting on well with you. And there are doctors who have problems at home, or who have heard some rumors about the disease, or other bad things. They contain these negative emotions within.
Personally, I had a situation during the C-section surgery. I do not remember the doctor’s name, but I remember her face well. She treated me disrespectfully: she was tossing me, giving injections painfully, threw me like a corpse. I said: “Why do you have such an attitude towards me? What wrong did I do to you? What kind of personal dislike it is? “She said, “They bring here the scum like you, and we must let you give birth in a normal hospital. Before you a woman was here, I gave her anesthesia. I began to cut her stomach, and she spluttered blood onto me”. “How could she splash blood on you?”, I said. “Firstly, you did not take precautions. You did not wear a mask, you were without gloves. And you blame this woman whose blood spluttered on you? Secondly, your diagnosis is not confirmed”.
This aggression spills out from such doctors to other doctors who have never encountered patients like us.
– Should a person like you, who will help, explain, support, be in Ussuriysk either?
– In any city there should be a person like me. I feel stirred when I return from training, in order to find people who can follow me and be honest to themselves without any fears. And this is also a work that takes time. While I’m on trips, holding self-help groups, I should first work individually and then try to organize groups, so that people would not be afraid of themselves. It seems that the city is big, but it is actually smaller than we think, and we all are in sight. So far everything is going well.
I am sure that when we receive our premises, when we can meet on certain days, then it will be much easier to pursue the goal of organizing patient control and already try to build understanding not only with the public, but also with decision-makers on whom our life depends.