The untold story of HIV positive children

In The  Hindu

NEW DELHI: On the eve of World AIDS Day, a photo exhibition lending a voice to the untold story of neglect and discrimination of HIV positive children opened at British Council here on Tuesday.

Bangalore-based photographer Srikanth Kolari, whose images focus on a range of social, political and economic issues including the struggles of seasonal migrant workers and sex workers, has come out with a collection of nearly two dozen images in black and white and colour. The photographs capture the vulnerability and denial of rights that the children face every day.

Media ethics

As the media ethics demand that any representation of positive children should not be done without revealing their identity, the exhibition “Suffering Silence: Untold Story of Orphan HIV + Children” uses this challenge to use creative ways to tell the story and connect without compromising on the important message.

According to ActionAid, which is hosting the exhibition in association with British Council, India has a long way to go in ensuring the health and human rights of the poor and vulnerable. Poverty, gender inequalities, violence against women, trafficking, migration and disasters are all fuelling the epidemic.

While inadequate nutrition weakens the body, expensive medicines and poor government health systems make quality treatment out of reach for the majority, particularly in rural areas. Parents die in their prime and even orphaned children are not spared the stigma and discrimination that is often more vicious than the disease.

“Recent years have seen a disturbing trend of rising new infections in women, young people and children, pointing to the epidemic spreading to the general population and in rural areas,” said the non-government organisation.

The exhibition is on view till December 6.

HIV positive children battle disease, discrimination

New Delhi, December 01, 2010
Published in Hindustan Times

Away from a group of children playing in a lush green park in the heart of the capital, eight-year-old Shashank huddles on an iron bench in a secluded corner. "I am HIV positive, so I can't play with them now. I wish I could join them," he says. He got infected at birth from his mother. According to the National AIDS Control Organisation (NACO), nearly 18,000 children got HIV from 65,000 affected mothers in the country in 2009.

HIV positive children battle disease, discrimination
Shashank (name changed) was diagnosed as HIV positive in 2004. He has now got used to facing discrimination all the time.

"At the time of Shashank's birth in 2002, I got blood transfusion at a government hospital in Delhi, and they gave me HIV infected blood. Both me and my son are HIV positive now," Shashank's mother said.

"Some school authorities also refused to take him when they saw HIV positive mentioned on his birth certificate," she added.

His mother is reluctant to reveal the government hospital's name as she has lost the papers of blood transfusion, and is unable to claim justice.

Shashank, who lives with his family in a rented accommodation in west Delhi, now studies in a government school nearby. The Class 2 student falls ill frequently and needs constant medication, but he aspires to join the police when he grows up.

"I want to be like other children. But the moment I say I am affected by HIV, I am made to feel like a victim," he said.

Social activists working for HIV affected children admit that even though there is a fall in the number of HIV-AIDS-affected in the country, and there are adequate funds by the government to provide medicines at the Anti-Retroviral Therapy (ART) centres, basic right to education, employment and nutrition are still denied to the patients.

"The problem comes when the status of any HIV positive person is revealed in public. There is a lot of stigma and discrimination associated with the disease, which is wiping away all efforts to spread awareness about its prevention," said Sahil, a member of voluntary organisation ActionAid.
Globally, around three million children are affected by HIV through parent to child transmission.

Thalassemia affected children, who require blood transfusion in every 15 days, are often given HIV infected blood.
"The need is to move beyond the dialogue of AIDS prevention. There have been cases where HIV positive people were not even allowed to use the common village tap," Parvinder Singh, communications manager with the ActionAid, said.

"Focus on a stigma-free life should be a priority," he added.

Cases of discrimination show the sordid state of affairs in some of the most developed parts of the country.

Miles away in Hyderabad, Rohit and Anurag (names changed) lead a fate almost similar to that of Shashank's.

"A month back I came to know I am HIV positive because of infected-blood transfusion. I have lost my mother to AIDS," Anurag, 10, bravely told a massive crowd at a public hearing organised in the capital by ActionAid.

"Everyone laughs at me, my teachers taunt me. When I come home, I sit alone as I realise it is a dangerous disease," he said.

Rohit's story is no different. "During recess nobody sits with me. My friends have changed the words of a song to tease me, saying I have a strange disease that will spread to everyone," he said.

The lack of most basic information on how HIV spreads is contributing to stigma, experts say. India has around 3.1 million people infected by HIV/AIDS.

"An HIV positive person's first support system is the family. Also, it is the responsibility of doctors and society as a whole to not let discrimination happen in any way," said Seema Rawat (name changed), 32, a fellow with ActionAid for the last four years.

"Lack of family support, financial crisis, fear of societal discrimination are making it difficult for HIV positive people to lead a respectful life. Financial crisis makes HIV positive women go into prostitution, after which they become high-risk groups," added Rawat, who was diagnosed with HIV in the year 2004.

Rohit, Anurag and Shashank are back in their hometowns these days, still leading a life of anonymity and struggling for their rights every day.

"I know death will strike everybody one day. Maybe, it will strike me early because I am HIV positive," said Shashank, whose experiences have made him mature beyond his young age.

Video testimonies of HIV + children

These are orphan and positive children who shared their struggles, stigma and denial of rights at a national public hearing in India's capital. The hearing was a summing up of a number of state level events to get them heard by India's leading child rights commission in the presence of state officials who should be taking actions to change this situation.

Lost childhood, hunger and stigma

Children living with HIV are in urgent need of food support and special focus under state schemes meant for poor and marginalised. Left alone with HIV claiming their parents, most are underweight, out of schools and forced into responsibilities of adulthood.

Lost childhood

"I want to go to the school, but they won't let me in," said Lakshmi. The five-year-old was accompanied by her grandmother, who shared experiences of stigma and discrimination the child had to go through right from the birth. "She isn't old enough to make sense of why she has to be away from the school and other children," the grandmother added.

"I have been taking care of my aunt who has psychiatric problem. I don't have the money my uncle asked me for transferring ownership of land that I inherited from my father," said Dinesh, 13, to a jury, late last year, led by Shanta Sinha with National Commission for Protection of Child Rights (NCPCR).

"Can you please help me with that?" he asked the government officials present.

Many of the children attending the hearing were orphans and dependent on grandparents who are themselves are fighting to access their entitlements, like the Antyodya scheme.

"The stories that emerged in today's hearing are also a reflection of how the society has pushed these children into premature adulthood. We are committed to continue to raise these issues with each state," said Babu Mathew, then the Country Director of ActionAid India.

Nutrition and inclusion

Amidst claims from the government of having numerous schemes and programs that include care for persons living with HIV & AIDS, the jury members raised serious concerns on timely and non-discriminatory access for the children living with HIV & AIDS.

Some of the key demands:

Children living with elderly care givers need immediate attention;

ICDS needs to extend to children over the age of six;

SSA too should have great stress on providing nutritious food;

Need to put children and their care givers under the purview of existing schemes like Antyodya;

Transportation costs to the medical centres can often not be borne by such families – provide bus passes;

Legal aid in cases where the children were not given their rightful inheritance;

Discrimination or cost of medical attention forces children to leave schools. They need scholarships;

Need for training and sensitisation of teachers and care providers at Anganwadis;

Psycho-social support for children subjected to severe stigma and creating a child protection mechanism.