Tashkent, Uzbekistan – Azima stood in front of a wooden board at a charity fair in Tashkent, Uzbekistan’s capital, tellingly named the Time of Miracles. The 16-year-old, dark-haired girl with azure blue eyes looked lost and uneasy. She knew that the event would change her life forever.
Amid dozens of passers-by, Azima anxiously awaited reactions to the statement she had just made. The piece of paper hanging behind her read: “I’m HIV positive. Hug me.”
In May 2017, Azima became the first person in Uzbekistan’s history to publicly come out as HIV positive. On World’s AIDS day on December 1 that year, she repeated her statement on national TV.
In Uzbekistan, until recently one of the world’s most isolated country’s, HIV carries a huge social stigma. An HIV outbreak that began in the early 2000s was never publicly discussed.
There is no available data on the number of people infected and even medical professionals often lack basic knowledge of the ways the virus is transmitted. In classes devoted to HIV, medical students and teachers often tell pupils the virus is passed through breath or handshakes.
By many in Uzbekistan, HIV is viewed as a death sentence, inseparable from prostitution, drug abuse and crime.
“Many people in Uzbekistan lack awareness. Some know how HIV is transmitted and some associate it with ‘bad behaviour'”, Azima told Al Jazeera. “I went through this. I want people to know what HIV and AIDS are and change their perception.”
According to estimates, between 8,000 and 10,000 HIV positive persons in Uzbekistan are children. Many of them were infected in hospitals through blood transfusions, catheterisation, and reuse of needles and syringes.
The epidemic became visible only in 2007, when AIDS centres saw a rapid increase in the number of young patients. That year, the first day care centre for HIV positive minors opened to provide the children with adequate medical, psychological and social support. Currently, there are nine such centres in Uzbekistan.
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Azima is one of the so-called “hospital children”. She was born prematurely and the doctors gave her little chances to survive. Aware of her poor health, Azima’s parents abandoned her and she grew up raised by her grandmother.
From her early days, Azima was a diseased child, spending most of her time in hospitals on various forms of treatment. It was only when she was six that the doctors discovered she suffered from HIV.
The diagnosis was like a sentence. Lacking awareness of the illness, and to protect her granddaughter, Azima’s grandmother decided not to disclose the condition to the child. As the social stigma runs deep, most parents hide the diagnosis from their children and relatives.
Azima eventually found out she was HIV positive at the age of 11. “It was a nightmare. I separated from my friends and stopped taking medications,” she recalls. “It was like falling into a dark tunnel. The whole time I was searching for the light.”
Speaking to Al Jazeera on the condition of anonymity, one mother of an HIV positive child said: “We haven’t told anyone. Until now, no one knows. Our relatives are asking us why my daughter is taking so many pills. I even change the labels so that no one knows what kind of medicines she takes.”
According to Kamila Fatikhova, a UNICEF consultant and a volunteer psychologist at the Tashkent day care centre, the fear of other people finding out about the child’s condition is not without reason.
“If someone at school finds out that the child is HIV positive, the principal may inform the teacher and the teacher may inform the parents. It happens that the child is being threatened and pressure is put on the parents to remove the child from school,” Fatikhova told Al Jazeera. “First of all, it shows that parents are not aware of their rights.”
It was a nightmare. I separated from my friends and stopped taking medications.
For Azima, however, everything changed when she began attending group meetings organised by UNICEF at the day care centre, where HIV positive teenagers can meet one another, receive correct information about the virus and, most importantly, psychological and social support.
“A long time has passed, but I remember my first experience with the group vividly. There was a bright, nice room, with pieces of handicraft hanging on the walls, and lots of nice-looking girls. I was so happy to be among them”, Azima recalls. “When my grandma saw me, she started crying because she didn’t expect me to be so happy”.
UNICEF has also provided the group members with training, thanks to which, many of the teenagers began working as trainers themselves, supporting other HIV positive children.
Azima has been one of the most active and vocal leaders. She visits orphanages and supports those who, just like her, were abandoned by their parents. Her public coming out was the next step in her activism. It was also the beginning of gradual change.
The experiment at the “Time of Miracles” fair, filmed by UNICEF, saw passers-by queuing up to embrace Azima. “Many people supported me, which made me very happy. On that day I wasn’t as nervous, but when I saw the recording from the day at the centre, I couldn’t stop crying”, Azima said.
Azima’s coming out provoked mixed reactions. While her classmates supported her and wanted to find out more about HIV, some of the parents initially forbade their children to play with Azima. It took time and a question and answer session during the parents’ gathering at school to get rid of the fear in her community.
But Azima’s message sparked change among those affected by HIV, too. “I met a few mothers who did not want to inform their children of their status, but after watching Azima
on TV they decided to do that”, Fatikhova said. “They saw an HIV positive girl on TV and realised there is nothing to worry about”.
While eradicating the stigma and fear of HIV in Uzbekistan will be a long and challenging process, the change has begun. “I’ve had a peace of mind since I opened up about my status”, Azima said. “HIV has been part of my life: my medicines, my treatment, my friends, my group. I don’t even imagine what I would be like without it”.