Once relatives kicked them out of the house, the women, depressed by the state of their health and negative attitudes toward them, have to worry about housing and domestic problems, rather than about their treatment.
Muhayo Nozimov, Dushanbe
25-year-old Zebo from Kurgan-Tepa in southern Tajikistan contracted human immunodeficiency virus (HIV) from her husband. She learned about it after giving birth to three children. Despite the fact that both parents at the time of conception were carriers of the disease, all of her children are healthy. But three years ago, her husband died. And the late husband’s parents asked Zebo to leave the house with all the children.
“My husband’s parents are quite wealthy people. In addition to the house in which we all live in, they have an apartment in Kurgan-Tepa. I pleaded with them to buy a one-bedroom apartment at least for the sake of their grandchildren, but they refused,” says the desperate Zebo, who agreed to tell her story on the condition of anonymity.
“I come from a poor family,” she added. “I filed a lawsuit against them, but after consideration, the judge took no decision on my case”.
Experts point out that such examples among women infected by their husbands are not uncommon. Few people are ready to live and support a person with such a disease. Even those next-of-kin.
“My husband’s father was a doctor, but when he learned about his son’s disease, even he assigned separate eating utensils and dishes to his son.” recalls Zebo.
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World Health Organization (WHO): “HIV can be transmitted through various body fluids of infected people, such as blood, breast milk, semen and vaginal secretions. People cannot contract [the virus] under normal everyday contact such as kissing, hugging or shaking hands, or by sharing personal items and the use of food or water.”
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“IT’S BETTER TO DIE THAN TO LIVE IN SHAME”
Although WHO affirms a person cannot be infected when dealing with HIV-positive patient, nevertheless most people in Tajikistan – both strangers and relatives – try to avoid contact with the infected. Therefore, there is an acute problem with housing existing among these people, especially among women as the most vulnerable group.
“We need to raise the level of self-esteem of these women so they know their rights and do not let themselves be treated like that. To inform their husbands that they can live with their wives and not contract the virus, that their wives may give birth to healthy children and live happily. That is, such families need to be continuously informed all aspects of this problem, both in legal and mortality aspects. Work should be done with the members of the husband’s family (in-laws, etc.), as they also play an important role in the relationship of their son and daughter-in-law” said the expert on HIV, Umed Talbov.
The expert explains that the desire of the population to avoid and get rid of HIV-infected people is the distorted information about AIDS in the 90’s that resulted in the wrong belief of people that only asocial people get the virus.
“People still have the same mindset – that HIV is a shame for life; people believe that it is better to die than to live in shame with the virus”, explained the expert, Mr. Talbov.
Nevertheless, the expert believes that compared to 10 years ago, the stigma has been diminished, but he calls on the State and civil society to intensify efforts to disseminate objective information about the immunodeficiency virus.
According to the National Center about the Prevention and Control of AIDS, little more than 6,500 people are registered with HIV infection in Tajikistan, almost 2,000 of whom are women.
About 30 percent of women were infected through intercourse, most of them from their husbands.
Prior to the wedding Zebo was not warned about the incurable disease of her future spouse, neither by the husband nor by his parents. The next heroine, Tahmina Haydarova, had a similar fate.
Tahmina married a man who came to Tajikistan once a year, and the rest of the time he lived and worked in Russia, where he had another family.
Tahmina’s daughter was born weak and constantly fell ill. She received a blood transfusion from Tahmina when she was 6 months old. The doctors did not check her blood before the transfusion. And the husband did not say anything. Her daughter Idigul was almost two years old when she died in 2010.
In the same year she buried her sick husband – three months after the death of her daughter.
Nobody in the whole world felt worse than Tahmina. But she found the strength to live on, and, at the request of her husband, took over the education of his daughter from Russia, moved from Hissor to the capital – Dushanbe to start life with a clean slate.
However, upon arrival in the capital, her “clean slate” was steadily stained with different challenges, the first of which was the lack of housing.
Although Haydarova was infected by her husband, her daughter died due to the negligence of the doctors who did not test her blood for HIV – on this basis, she decided to obtain housing space from the City Hall.
Lawyers have endorsed the right of the heroine: in accordance with Article 34 of the Housing Code of the Republic of Tajikistan, a person infected with HIV through the fault of public health institutions is entitled to housing.
After three years of futile appeals to state bodies, Tahmina Haydarova told about her problem to the governor Mahmadsaid Ubaydulloyev at a meeting in the City Hall.
“The mayor heard me out, took note of my words and said that Hukumat does not have the ability to give someone an apartment, but there are some options that can be pursued by those in need” recalls Haydarova.
Although Tahmina will not receive housing for free, nevertheless, with the assistance of the City Hall she has the opportunity to buy an apartment from the municipal builder PA “Manzili Dastras” at a relatively low price – while the average cost of a 50 sq. meter apartment is USD 35,000 Tahmina Haydarova can buy it for USD 15,000 which can be paid off within 3 years.
But Tahmina Haydarova’s story is an exception to the rule, different than the usual practice in Tajikistan.
“HE SWORE HE WOULD NOT TELL ANYONE”
Legislation of the Republic does not aid in improving housing conditions to those who just carry HIV, but rather those who were infected because of the negligence of doctors; fearing of becoming social outcasts, they are not ready to actively defend their rights.
According to the Center for Prevention and Control of AIDS in RT, there is not a single case in the history of the country whereby infected patients were granted housing.
After losing the lawsuit in court against her husband’s parents to provide shelter for her children, Zebo decided to appeal to the President of Tajikistan, Emomali Rahmon.
Administration of the President forwarded Zebo’s letter to local authorities, and after some time they summoned her.
“I was shocked when he told me he knew about my disease – said Zebo. “I was very much afraid that everyone would find out about it, but he swore he would not tell anyone.”
Although the district was going to forward her appeal to a different area where they would perhaps help allocate a piece of land, Zebo flatly rejected this idea.
“I was afraid that if my letter went to another Jamoat, the people there would also learn about my case” says the single mother of three.
“I told the district militia officer that I did not want anyone to know about it, and then I gave up on it altogether,” explained Zebo.
Lawyers understand Zebo’s caution and fear, and argue that the public authorities, in accordance with national laws, are obliged to keep the status of HIV patients seeking help.
Lawyer Sergei Romanov cited several paragraphs of article 12 of the Law “On Combating Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome” which, in addition to the confidentiality consideration, guarantee a number of rights, such as the right to restitution, compensation, participation in social life as all other citizens, keeping their status secret as long as it does not endanger the health of another person, and a decent conduct of others.
THE DESPERATE AND LONELY UNITE
However, currently the reality is far from these laws, and Tahmina Haydarova has set a goal for these laws to effectively protect the fragile, abused, and suppressed women.
She is the only woman in Tajikistan who does not hide her disease, and she supports other women like her.
“My decision on such revelation in a traditional society where there is an unspoken taboo on the subject, was made out of despair. I decided not only to disclose my status, but also to help other women, who are exactly like me – desperate and lonely,” says Haydarova.
Through her NGO “Network of Women Living with HIV”, Haydarova together with her team fights against the negative attitude of the population towards carriers of the disease, and provides psychological and legal assistance to these women. Her network currently brings together 80 women from all cities and districts of the Republic of Tajikistan.
“Despite the fact that the husband infects his wife, the husband’s family does not accept her, chases or isolates her from others. And as these women do not know their rights, they are afraid to disclose their status and do not seek help” says Tahmina Haydarova.
But Tahmina hopes that her personal story will win the trust of as many women living with HIV as possible. And she will provide them with the support and warm love, pulling them out of the hostile environment, which held them in captivity of distorted information.