Various Parents: Learning to Live with a “Plus” on Your Record
Parents and caregivers of HIV positive children express their views about the daily challenges they face, the strategies they are creating to cope and their hopes and dreams for building a better future for their children and families.
Children who have a “plus” in the HIV status box of their medical records are different from their peers in just one way – having to take one little pill in the morning and in the evening. However, because of that little mark, each year thousands of children suffer from being deprived of normal childhood. Discrimination by society remains one of their main problems.
Mom, I am normal
Alla Panarina, the HIV positive foster mother of Danya from Kriviy Rig, Ukraine, says that because of that “little plus” in her son’s medical record he was refused admission into two kindergartens. When Danya entered first grade, many parents were upset that an HIV positive child was studying alongside their children and repeatedly demanded that the child be moved to another school.
“Someone in the medical profession broke the confidentiality of my son’s HIV status,” explains Alla. “We only realized this upon seeing other children constantly avoiding him. He continues studying in the same school, although he has no friends to share his desk with. Children are either afraid or refuse to play with him. They say that he is ’disgusting.’ His only friend is his brother. Every day for us is a constant fight because my son and I have to prove that we are ‘normal’ and that no one needs to be afraid of us.”
Danya was infected with HIV from his mother, who died of tuberculosis soon after his birth. Alla believes that his mother could have lived much longer if only there hadn’t been so much discrimination from the medical staff: “Doctors from the hospital would not even examine her. Their attitude was that being HIV positive meant that she must be a drug addict. Of course that wasn’t the case.”
Small Danya is experiencing the same discrimination. The doctors refused to perform a tonsillectomy on the HIV positive child; instead, they suggested he go to another town, which Alla could not afford to do. The result is that Danya is still waiting for the necessary treatment.
Alla believes that HIV positive children would have better lives if the government supported their families.
In the words of Evgeny Spivak, of Minsk (Belarus), even healthy children can be discriminated against due to their HIV positive parents: “When I brought my daughter to kindergarten, other parents got together in protest and refused us entrance into the kindergarten because of my HIV positive status. It surprises me that, in this modern day world, people treat HIV positive people like lepers. The great risk is that for the child this can become the cause of serious psychological trauma,” says Evgeny.
“AIDS took away everything from me; the health of my child, my husband left the family, I lost my job,” said Altinai Galieva, from Osh, Kyrgyzstan. In 2007, like many others her little boy was infected with HIV in the hospital through the use of unsterile equipment. At that time, her son was three years old. Altinai filed a lawsuit. The results of the investigation confirmed that her child was infected through the use of unsterile needles during the injection of medication. Nevertheless, the government did not offer her family any support. Altinai hid her child’s status from her relatives, friends and community because of fear of discrimination.
“I refused to apply for cash assistance for my son because I am afraid of becoming an outcast. We live in a small town. If friends find out that my child is HIV positive, they will stop talking to us. I will never be able to get a normal job. I can’t even walk down the street in peace. There is a very negative attitude toward families with HIV. The government ignores our problems and there is no confidentiality even in our medical services.”
According to Altinai, her son was also repeatedly refused admission into kindergarten. “It hurts me because, like so many other parents of HIV positive children, I cannot provide many life necessities for my child,” says Altinai. “I cannot work normally; all my time is spent taking care of my son. I know that this is the case for 80% of families who have children affected by HIV.” Altinai concludes: “I speak openly about my problems to the government bureaucrats, to donors and to charitable organizations. But I have to keep from disclosing the status of my son to my own friends”.
I am Afraid that my Son will be Alone
Kanat Alseitov: “The most important thing is that an HIV-positive child receives love and support from his family.”
“To protect my son, I took the initiative to create a group of parents, to seek assistance and support from the government for affected children. Today, my son receives his antiretroviral treatment and looks the same as any other child. My main concern is that after he grows up could be all alone. The exclusion of HIV positive people by the community is too aggressive. It is hard to say how many years it will take to change that.”
In the photo – Kanat with his children
Finding a caring family
Elena, a foster mother of two HIV-infected daughters living in Crimea, Ukraine, considers that the main indication of the negative attitudes of society toward HIV infected children is the refusal to even consider them as candidates for adoption.
“From the first moment I saw them, I immediately knew that I would love them like my own children”. Imagine my surprise when the adoption agency tried to convince me not to take these two girls!” They said to me: “Why would you want such a headache, you should take some other children.”
Later, when I brought the girls home, the first thing that I had to face was their own fear of HIV. At the orphanage, no one offered them any psychological support. The younger daughter said to me: “I know what HIV is. It is the worm that lives inside my body.” I cried. I decided to dedicate myself to helping the girls return back to a normal life. I explained to them, that with HIV, one can live and one can be happy.”
Elena feels that the current attitude of society toward HIV-infected children is gradually changing. Over the last two years, six HIV-positive children have found placement families in Crimea. “This may seem immaterial to some. But for us, it is major progress resulting from many educational sessions, meetings and seminars with potential care-giving families. I think that the biggest reason for discrimination toward children remains fear and the absence of appropriate information about HIV.”
The Parents-to-Parents Network was established in 2010 by UNICEF and the East Europe and Central Asia Union of Organizations of People Living with HIV/AIDS (ECUO) to provide opportunities for parents to share their experiences, build confidence, become better advocates for their children and take action together.
Through P2P, parents exchange all types of information – including information about personal health, how to disclose their HIV status to their children, how to become a foster parent and how to develop effective advocacy strategies to influence decision makers.