Media should become the voice of People living with HIV
It was an occasion with a difference when people living with HIV, opened up their hearts to express their agony and frustration before the media persons. Both the 'affected' and the 'infected' pleaded the media to make their voices reach the policy makers and executors.
"Things will work faster and roadblocks will be removed if the media takes on the responsibility of becoming the voice of the positive networks", the hopeful statement came from Manoj Singh, the president of Banaras Network of People Living with HIV (BNP+).
Over 50 people, mostly children, who were affected or infected with HIV, had gathered at Varanasi Press Club for an informal interaction with the media persons. The unique initiative was the result of a joint effort of UNICEF and Media Nest (a body of media professionals). There were no cameras, no formal interviews and no restrictions, which resulted in children pouring out their hearts to scribes.
"My grandmother keeps mommy and me locked in one small room in our house. She does not let us out and does not allow others also to enter our room. She says we are suffering from some bad disease and will infect everyone who comes in our contact", said eight-year-old Sapna.
Sapna was not alone to have been facing discrimination and stigma, most of the children in the big hall of Press Club had similar stories to share. If Sapna was feeling discrimination at home, ten year old Devendra felt an outcast in his school. "My classmates mostly stay away from me. Some of them told me that their parents have given them strict instructions not to sit with me or eat with me because I have some dreadful disease which might infect all those who share their food with me or sit close to me."
Fearing the social boycott of their children a few of the mothers have not told anyone about their children’s status. "She does not know that she is Positive", says Kamla about her 12 year old daughter Divya. Then how does she take her medicines? "I tell her that this is for her good health and she has to eat that so that she does not fall ill", this is how Kamla manipulates her daughter to take the medicine.
If children face discrimination, their parents too remain at the receiving end, not only at home or at work but even at the medical service centre.
"The staff at the Anti Retro-viral Therapy (ART) centre, is often very rude and has no time to listen to our problems. They work mechanically, mostly due to rush as over 300 people come there every day", Manoj said.
Earlier, there were Drop-In centre to cope with the crowd of ART and Voluntary Counselling and Testing (VCT) centres (VCTC). When a person comes for test and is told that he/she is positive, his/her whole world crumbles down. The news comes as shock and what the person can see is only a dead-end. In such situations the Drop-In centres used to be a big help. Besides, the centres served as ideal resting and relaxing places for people coming from far-flung places. An interaction with people having similar problems relieved many while giving support. But the government has closed down these centres without any reason.
Even the existing facilities sometimes don’t reach the positive people. The Disposable Delivery Kits are often not available risking many new lives. "If I had known that I am HIV Positive I would have never given birth to this child", says Mamta, the mother of a five-year-old.
It is an alarming situation as India has an estimated 200,000 children infected with the virus, of which over 50,000 are born to HIV infected mothers, every year. Although the latest National AIDS Control Organization (NACO) guidelines state that every woman expecting a child should undergo HIV test, the number of institutional deliveries is far more less in comparison to deliveries at home, this is true especially in a backward state like Uttar Pradesh.
The UNICEF Communication Expert Augustine Veliath mooted formation of a 'media support group for positive people'. The group should have regular interactions with the Positive Network People to listen to their woes and try taking it forward to officials concerned, besides raising their issues through some sensitive writing.
"We must build up a safety net of support around this very vulnerable group of people," Augustine exhorted the media to come forward and support the positive network with an ongoing and regular relationship. "We want to create journalists who are interested in the rights of children."
Speaking on the occasion senior journalist and secretary general of Media Nest, Kulsum Talha said that a journalist is a true social worker who uses his pen to raise issues related to every section of the society. "Media Nest provides a platform to journalists for fulfilling their responsibility towards the society and also acts as capacity–builder for journalists by helping them do their work better."
(The author is a senior journalist)
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