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Nataliya Zholnerova: “People Do not Die from AIDS for Long Now"

An interview by Natalia Zholnerova to "Svoboda Slova" Kazakh newspaper about "Ameliya" and HIV/AIDS.

According to statistics, about 25 thousand people were diagnosed with human immunodeficiency virus in Kazakhstan. But on the eve of the World AIDS Day, let's not talk about the numbers, because the exact number of people living with HIV cannot be stated by any medical facility. There is an endeavor to try to understand how they live with the diagnosis, which for most of us sounds like a sentence. And what kind of help they can expect. We will not talk again about the medical institutions that do their job: for example, AIDS Centre in Almaty region is active on a regular basis and provides a full range of services foreseen by the legislation of our country. These services include both treatment and comprehensive prevention. Today we hear the story of a person who willingly chose the path of care for people with HIV. two years ago Natalia Zholnerova from Taldykorgan opened the first public association that is at the moment the only one in the region, which is designed to provide support for those who are in big trouble.

A Person has a Problem, a Person is in Trouble

Every day those, from whom the society mostly turned away, come to civic organization “Ameliya”. Among them are HIV positive people, former prisoners, drug addicts, and sex workers. Natalia Zholnerova, who is a professional psychologist with eight years of experience, tells that during the organization’s existence around 600 people addressed them. Since the beginning of this year around 80 HIV-positive people have come for help to “Ameliya”. Before, Natalia worked in one of the regional foundations for several years. The focus group of this foundation were so-called in professional jargon  “the people in trouble”. The idea is to choose such a difficult direction came to the head of “Ameliya” during her maternity leave. Before, she had seen that the number of people living with HIV was growing, but nobody was dealing with this category of people in the region.

"While on maternity leave, I realized that I need to create some kind of organization, which would have a slightly different direction, and still did not exist in our town and our region. Such organizations were quite developed mainly in Shymkent, Karaganda region. While I was working as a psychologist in the previous organization, a lot of people came there and a lot of different issues emerged.I was also interested in going in this direction (working with HIV positive people) as a specialist, as I needed to improve their personal growth by working with people like that, because we would need to use new techniques and to look for new approaches”, says Natalia.

During her work in the previous organization, Natalia acquired a lot of partners across the whole Kazakhstan: international donors and NGOs in all regions. Over time, she has gained the support of local government officials and other professionals working in the same field.

It was not too hard for her to create an organization, moreover, she found people who helped her to make it happen. First, the head physician of the city hospital provided them with an office free of charge. Back then the organization had nothing: neither people, nor equipment. We started this way. Over time, the regional department of employment and social programs started supporting us. Now there are five social workers in “Ameliya”. They work in different directions and with different categories of people, such as sex workers, people living with HIV, drug users, prisoners, and children who are suffering from tuberculosis.Natalia says, “If there are organizations that provide aid in disease or deviant behaviour prevention, we are not the one like them. We work with those who are already in trouble. There are AIDS Center, HSL center, the Red Cross that carry out preventive activities among university and high school students. We do not do this. If people already know their HIV status, we are helping them to live with it: how to plan a family, how to give birth to a healthy child, how to find employment, as not every employer will hire a person living with HIV or registered at a drug rehab clinic."

Among Friendlies

“In “Ameliya” they protect their customers from prying eyes, even among friendlies. They do not allow to take pictures of the employees, as there are those among them who are still or were recently in the focus group themselves. People from each core group meet within their group only, on days different from the the ones when other groups meet. There is the place for such conspiracy largely because most of society to this day live with stereotypes that are very far from reality”, say the experts of “Ameliya”.

Natalia highlights, “Apart from five peer-to-peer counselors, who went through a special training, there are psychologists and a lawyer at "Ameliya". These are employees who belong to a special category. These are the people who experienced the same issues with which they are helping others now.

They provide tremendous help and support. Firstly, they are employed themselves and they have their place in society. Secondly, they can truly understand those who come to us. Imagine, a woman living with HIV would approach you and say, "I have HIV, I feel so bad, no one understands me, if my relatives find out about my status, they will kick me out from home.” What could you answer to her? "Yes, I understand?” You would be immediately reproached that you just could not understand her because you are not HIV positive. When I provide counseling to different people cannot say, "I understand you." I can only provide professional help to wear off emotional state, fear, anxiety, anger. A peer counselor, who lives with HIV or was a sex worker, or knows what it is to use drugs, can explain in accessible language what it all is, where one can go, and how to live with it.”

Bogeyman Stories Defy All Reason

Natalia Zholnerova throws up in the air the usual stereotypes that says that sex workers are the main transmitters of HIV: “I totally disagree that sex workers are being accused of transmitting HIV. Nowadays the HIV percentage among them is the lowest compared to other population groups. Unlike others, they make a practice of HIV testing every three months. Generally, the women who are registered in the AIDS centre are not either sex workers of drug users. These are usual girls aged 25-30.”

It is Important to Know that Nobody is Alone

People, who come to “Ameliya”, already have the problem. And to confess about it is also some sort of a barrier. When we are talking about people living with HIV, they are directed to us either through center AIDS or other state services, tells Natalia Zholnerova.

Civic Organization "Ameliya" is visited every day by those from whom the society turned away in most cases, namely, HIV positive people, former prisoners, drug addicts, sex workers. A professional psychologist with eight years of experience, Natalia Zholnerova tells that during the organization’s existence around 600 people addressed them. Since the beginning of this year around 80 HIV-positive people have come here for help. Before Natalia herself worked for several years at one of the regional foundations, the focus group of which were “the people in trouble”, called so in professional jargon.

People living with drug addiction come to “Ameliya” through peer-to-peer consultants.

Natalia Zholnerova also said, “We also go to saunas and hotels, where we consult, tell how HIV and STIs are transmitted, and why it is important to provide protected sex services with each intercourse. Sex workers also come to us. A training for sex workers was held in two stages: the first one took place in July, the second one took place in mid-September. This two-day training on advocacy concentrated on the fact that sex workers are constantly exposed to the offences and they have a lot of difficulties. We had conducted a small research, in the process of which we have revealed a lot of violations of the law. First of all, it is the person herself/himself, who needs to defend her/his rights, but they think that because of their (sex worker) status they have no rights. This is completely wrong. And we had such training in order to empower the sex workers community to defend their rights and to know where to go in case of violation of human rights and so on.”

Also, there are the following services that "Amelia" provides: redirection to health professionals examination, where one can take a blood test, a smear, gynecological examination free of charge, HIV testing, chest X-ray and advise on restoration of documents and other legal assistance.

Furthermore, Natalia talked about legal obligations of people living with HIV, “It is worth mentioning that everyone who is diagnosed with HIV is compulsorily registered and signs a document that obliges her/him to inform her/his partners that she/he has HIV. In other words, if she/he conceals this information, he/she will be held criminally liable if anyone files a complaint about her/him to the law-enforcement agencies. And this means five years of prison.” 

Future Plans of “Ameliya”

“There are dreams and there are concrete ideas”, says Natalia Zholnerova. “It is necessary to conduct trainings for medical personnel, law enforcement agencies and media people, because they can influence public opinion.

Such terms as "AIDS people" and similar, according to Natalia, create corresponding public attitude towards people with the disease. “We also have a work plan with the population. But our young association has no money for it. We need money to carry out public events, to issue booklets with relevant information presented properly. The latter, in spite of the ongoing work, is not enough. The only thing that is holding back all these plans is, as usual, a financial issue. NGO "Ameliya" is supported by the state, in the first place these are social jobs provided by by the employment center, state social order, in other words, grants. But it is not always possible to get state grants due to the price, as well as thematic proposals”, says Natalia. She continues, “There are international donors, but they mainly focus on major cities in the country, as well as places with traditionally higher HIV rates. So far the NGO "Ameliya" takes part in only two international projects. One of them is aimed at drug users, and other one is aimed at sex workers. People with HIV and reproductive health as a whole stand on the sidelines”.

Natalia Zholnerova rounds off the conversation with an important recommendation, which is frightening, but effective, “I always say this at all training: when you are going to have sex, you should be looking at anyone as a potentially infected person, and therefore, to have only protected sex in any situation.”

Source: Dina Kaldybek, Taldykorgan, "Svoboda Slova"