The UNICEF study of Kerala that revealed this and other findings says that 88% of children in the state have not revealed their HIV-positive status in school for fear of dismissal or discrimination. Many of those who have done so speak about the problems they encounter, though a small positive change is discernible. Anosh Malekar details the findings of the report

• “I went to seek admission for my 3-year-old child at an anganwadi. The teachers told me if you want admission bring your child before the other children arrive and leave before they leave” – an HIV-positive widow from Idukki.

• “The school authorities were unwilling to let my HIV infected child continue his education after his status was revealed to them. He lost one year and after a lengthy process of petitioning higher authorities, he was readmitted in the school. He is now studying in standard 5” – a parent from Kannur.

• “Many students are leaving the school and joining other schools because HIV-positive children are studying here” – an HIV affected child from Kollam

• “My child was refused admission in a school six years ago because we (the parents) were HIV-positive, but her younger sister, who is infected, is studying in another school without revealing her HIV status” – an HIV-positive mother from Malappuram

These testimonies to the fear and stigma that HIV affected or infected children still battle is revealed in an exhaustive study titled ‘Situational analysis on children affected by HIV/AIDS in Kerala’ sponsored by UNICEF.  

The study covered 235 children who are either HIV-positive, have one parent (or both) living with HIV or whose parents died of AIDS. Some 88% of the affected children said they had not revealed their or their parents HIV status in school ‘due to fear of breach of confidentiality and stigma/discrimination’.  

‘Denial of education was the most common problem faced by the affected children. When the status of the parent or child is disclosed many children had to temporarily discontinue education and sometimes they had to find out another school to pursue their education. Many children stop schooling in order to take care of their infected parents as well as supplement household income,’ the study says. 

The study was conducted in 14 districts of Kerala in two phases, from December 2007 to February 2008, with the objective of identifying gaps in the state’s policies and programmes for affected children and to find out the kind of stigma and discrimination they face.  

While the study found that education was denied HIV affected or infected children on a regular basis, many instances of such denial have not been officially reported. Most cases are settled locally or with the intervention of supporting agencies. The study recorded cases of 16 children who were denied education from various districts of the state.  

“In every district of Kerala affected children are studying in schools, some of them highly reputed ones, without disclosing their HIV status. Exposure can lead to negative consequences for the child’s studies and mental health,” says M P Antoni, who headed the study as the project director of RAJAGIRI-CASP Sponsorship Project, a joint venture of Community Aid and Sponsorship Programme, Pune, and the Rajagiri College of Social Sciences, Kalamassery. 

The discrimination starts at a young age, in the anganwadi, say parents of the affected children. “We found that no school administrator is willing to admit children if they are HIV-positive,” Antoni says, emphasising that the greatest challenge faced by the affected children is schooling.  

The main concern of the children was that ‘their friends and teachers fear them, their classmates are not willing to share a bench or dine with them’.  

Said one child from the southern part of the state, ‘My teachers are very much concerned for me. But my classmates are avoiding me. They don’t like to share my bench. I have to sit separately.’ Another child from the north of the state said: ‘The PTA (parent-teacher association) of my school did not allow me to play with other children.’   

The lack of correct information on HIV/AIDS among school authorities leads to forbidding or segregating affected or infected children in many ways. There were cases of teachers maintaining a distance from the affected children. In some cases school authorities demanded periodical HIV status reports of the affected children even though the children were negative. Parents of other children interfere to limit or bar social interactions.  

An HIV-positive widow from Idukki narrated how one day while playing with his friends her son bit another child. ‘The teachers asked for his HIV test report. They were not satisfied with an earlier one showing he was negative. They demanded we get a new test done.’  

Antoni says that though the Indian Constitution ensures free and compulsory education to all children in the age group of 6-14 years, “the fact is HIV/AIDS affected children aren’t getting any special consideration or privileges in a highly literate state like Kerala. Over and above, they are facing many types of discriminations and are denied the right to education. There is a lack of awareness at all levels - local communities, school authorities and parents and teachers associations. Why, even close relatives of the children contribute to the situation.”  

Social discrimination against HIV affected or infected children in Kerala first came to public notice a couple of years ago when five HIV-positive children from the Asha Kiran orphanage in Pampaddy town in Kottayam district were denied entry to a renowned school despite the intervention of the state government and social activists. The Parents Association of the school strongly opposed the children's entry and even threatened to withdraw their wards. The raging dispute was settled through the intervention of the government, courts and some voluntary organisations. But the problem is far from over. In fact, it is widespread, as this study reveals. But there are some positive aspects too. 

The study said networks of positive people play an important role in the education of affected children by taking up their case with school authorities and getting them readmitted if they have been dismissed. In almost all the districts of Kerala, nutritional food for HIV affected children is supplied by the positive networks in association with non-government organisations (NGOs), faith-based organisations and other interest groups, who also mobilise local resources to support children whose school education has been seriously disturbed due to bad health and the poor economic condition of their HIV-positive parents.  

Children’s education is also affected when HIV-positive parents are unable to earn a living or have to spend a considerable part of their income on their own medicines and cannot pay school fees. Parents are sometimes forced to be separated from their children due to their medical condition or related reasons. 

Then, says Antoni, “Even if a child is lucky to be admitted to a school, there is no guarantee of higher education. Higher education of affected children is not addressed by any of the voluntary agencies or by the government. Supporting agencies mainly focus on positive children.”  

The study estimates that Kerala has some 5,599 HIV affected children, of whom 426 are HIV-positive. A majority of them do not get a proper education. Specific legislation is needed to address issues like segregation and to ensure equal access. There has been no discussion specifically regarding HIV affected children in the programmes of local self-government bodies and other government departments in Kerala.  

HIV affected children are not included in government development programmes and get little help when they approach local self-government bodies. The exceptions are Kasargode and Kannur where local governments have started a nutrition programme for HIV affected children and a housing facility for HIV orphans. The district panchayats in Alappuzha and Malappuram, too, have offered support for implementing the nutrition programme from 2009. 

The services of the Kerala State AIDS Control Society (KSACS) are confined to medical and healthcare. Many agencies including faith-based organisations are providing support for income generation through positive networks and some NGOs. Self Help Groups in Kollam, Alappuzha and Ernakulam have helped to generate additional income. The Clinton Foundation gives monetary support for the medical care of infected children in Thiruvananthapuram, Alappuzha, Ernakulam, Kannur, Kasargode and Wayanad districts.  

As in other states, in Kerala too, medical services are inadequate. There are only five ART centres in government medical colleges in Thiruvanthapuram, Alappuzha, Kottayam, Thrissur and Kozhikode. CD4 testing is available only in four districts of Thiruvananthapuram, Thrissur, Kozhikode and Palakkad. However, those interviewed for the study were of the opinion that there are doctors and paramedical staff that render good services for the HIV affected. 

What Kerala lacks, according to the study, is advocacy for children, which is not done effectively or in a timely manner: ‘When children were refused education at Pampaddy School many people made statements against the action. KSACS, NGOs and renowned persons made attempts to settle the issue. Meetings and discussions at the education minister and local level were held. All the attempts failed because no one took the initiative to legally advocate for the children. Even those who were directly involved with the children including the teachers and school management did not stand up for the rights of these students. The High Court of Kerala intervened in the issue after public interest litigation was filed by an NGO. But the children had to wait nearly one year to continue their formal schooling.’  

The study documents some signs of positive change in the attitude of school authorities, teachers and friends. One child from Kollam is quoted as saying: ‘My teacher knows my health status and whenever I am sick she informs my home and gives much care.’ Another said ‘School authorities are well aware of my parents’ status but I face no segregation.’  

To push for more such changes education policies for HIV affected children must be effectively implemented. At present, they are only on paper says the study. Recently, the state’s social welfare department incorporated a module on HIV/AIDS in the curriculum for the training of ICDS (Integrated Child Development Services, a major government health initiative) supervisors and anganwadi workers. But department officials were found not to be aware of even existing programmes in their own department.  

Awareness raising programmes by government and NGOs exist at various levels, but the impact is limited, indicating that a change in strategy is required. Healthcare professionals agree that gaps in services and policies for HIV affected children exist mainly in the areas of psychological support and education. 

All those interviewed for the study felt that specific policies must be put in place in schools to protect the rights of children affected by HIV/AIDS and for dealing with stigma and discrimination. HIV affected children are not getting any policy-level support from the government, except for ensuring admission in regular schools. 

The study concludes that the stigma and discrimination against HIV affected children is higher in the education sector than in the healthcare sector. The incident at Pampaddy, Kottayam, was a clear indicator of the lack of concern and awareness to this pandemic. Stigma and discrimination around HIV/AIDS needs to be addressed from the micro to the macro level as it infiltrates all aspects of society including social castes, socioeconomic status, religion and gender. 

The study strongly underlines the need for networking and coordination between various government and non-government agencies to build positive networks to improve the quality of life of HIV affected children. 

(Anosh Malekar is a journalist with 18 years of experience with publications including The Week, The Indian Express and The Times of India. He is senior researcher-writer with the Centre for Communiation and Development Studies (CCDS).)

Infochange News & Features, June 2009