Interview with Zama Coursen-Neff.
Zama Coursen-Neff, a researcher with the U.S.-based Human Rights Watch, is the author of the organisation's report on children affected by HIV/AIDS. She was in New Delhi recently for the release of the report. Excerpts from an interview she gave Siddharth Narrain.
What prompted Human Rights Watch to undertake this initiative?
Human Rights Watch has recognised the connection between the HIV/AIDS pandemic and human rights and developed this work over the last two to three years. The first time we did research on India was on the police violence and harassment faced by peer educators working for the prevention of HIV/AIDS. Though many of these initiatives were supported by NACO [National AIDS Control Organisation], the police were still arresting peer educators, beating them and taking condoms away. This was impeding people from getting access to HIV/AIDS education. Children are often an invisible population. So far the government's response has been to frame the situation as a disease of bad behaviour. We heard tentative reports on the abuse of children affected by HIV/AIDS in November last year when we began research in Tamil Nadu, Kerala, Maharashtra and Delhi and talked with government officials in Andhra Pradesh.
What is your assessment of the media response on this issue so far?
Though one or two cases where children have been thrown out of schools have got a lot of media publicity, there is a large population of children which faces discrimination and does not make it to the media. These children do not have the resources to fight. Many parents now hide the HIV positive status of their children as they are scared that schools will not admit them.What has the government's response been?
In Kerala, the government's policy is that children with HIV/AIDS cannot be denied access to schools but children are still being thrown out of schools. Also, there is no accountability as far as private schools are concerned. The Indian government has started a programme to prevent mother-to-child transmission.
There are AIDS control societies in States like Tamil Nadu that are funding small projects that deal with children affected by HIV/AIDS but the human rights dimension, that is, the children's right to education, health care and freedom from discrimination are not addressed. The response to AIDS has to come from all the wings of government. So the Ministry of Education has to deal with this issue. For example, in Kerala the issue is dealt with by the Health Department but the Ministry of Education and the Ministry of Social Justice and Empowerment, which deals with street children and so on, are equally responsible. These wings of the government have to take responsibility and there has to be leadership from the national level.
Did you come across any positive initiatives while you were doing the fieldwork for the report?
We found isolated instances where teachers, parents, NGOs [non-governmental organisations] and sensitive individuals have provided minimal amount of support to keep children in schools and out of institutions. There are cases of teachers going out on their own to educate children and it is these teachers who need the support of the State. Any person who cares for children needs accurate information about HIV/AIDS. What we need is a policy or even better, legislation, that says that schools cannot discriminate against children if they are affected by HIV/AIDS. We hope that the law that is currently being drafted will follow U.N. [United Nations] guidelines and will specify that no children will be excluded from schools solely because they have HIV/AIDS.
How should the government deal with the issue of those orphaned by HIV/AIDS?
The first step is prevention. This involves treating the parents and educating the extended family about how HIV is transmitted. Internationally, the focus has been to look at the foster care system and to avoid putting children in institutions, but if children are in institutions they should get AIDS education. It is well known that children are sexually active within institutions and that there is abuse as well. In such a situation there needs to be HIV/AIDS education within orphanages and juvenile institutions. Also, there are many States that deny that there are children with HIV/AIDS in institutions. For example, in Kerala, the department responsible for orphans said that there were no AIDS orphans and that if needed they would set up separate institutions.
What are the relevant international norms and principles that apply to this issue?
Article 2 of the Convention on the Rights of the Child (CRC), to which India is a signatory, requires state parties to take appropriate measures to ensure that children are protected from discrimination irrespective of the child's or his or her parent's or legal guardian's race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status. The Committee on the Rights of the Child has interpreted "other status" to include HIV/AIDS status of the child or his/her parent(s). Similar provisions are contained in the United Nations Convention on Economic and Social Rights and the Convention on the Elimination of Discrimination Against Women, both of which are ratified by India.