Prisoners of prejudice

Published : Aug 27, 2004 00:00 IST

"When I went to school, I sat separately from the other children, in the last mat. I sat alone. The other children wanted to be with me, but the teacher would tell them not to play with me. She said, `This disease will spread to you also, so do not play with her.' But after school, the other children would play with me," said A. Sharmila, a 10-year-old from Tamil Nadu, living with HIV. She lost her parents to AIDS.

Six-year-old Anu's teacher sent her home from kindergarten, instructing her elder sister to tell her "please not to come again to the school". Her grandfather, who had been taking care of Anu and her siblings since their parents died of AIDS, said, "The teacher did not allow her to come to school because she believes that Anu is HIV-positive. I believe that other parents were talking among themselves, so the teacher said she should not come."

- Future Forsaken: Abuses Against Children Affected by HIV/AIDS in India

THE latest Human Rights Watch report recognises that children, especially girls, are extremely vulnerable to societal prejudice. Among other major problems they face are lack of health care and awareness about the cause and methods of prevention of HIV/AIDS. The government, taking a highly moralistic position on this issue, has refused to recognise the magnitude of the problem. It has no accurate figure of the number of children affected; nor has it made a serious attempt to estimate it. At the State level, officials continue to downplay the number of children affected. Apart from the millions of children living with HIV/AIDS, many others are either orphaned or forced to withdraw from school to care for their sick parents. According to the report, there are approximately 1.2 million Indian children under the age of 15 who have lost one parent or both parents to AIDS.

In 2002, Bency and Benson, orphaned siblings with the HIV infection were denied admission to private schools in Kerala because of objections raised by parents of other children in the schools. Though the matter was sorted out after the Chief Minister's intervention, the controversy was a grim reminder of the extent of prejudice against people living with HIV/AIDS even in a State with a high literacy rate.

The research for this report was carried out in November and December 2003 in urban and rural Kerala, Maharashtra, Tamil Nadu, Delhi and Andhra Pradesh. Human Rights Watch volunteers spoke to more than 170 people, including 51 children, parents, grandparents and guardians, doctors and other medical staff, counsellors, social workers, lawyers, activists, United Nations staff and government officials at the district, State and national levels.

The report traces the connection between the failure of the public health system and the discrimination faced by affected children. An important reason for the discrimination is the public misconception that HIV/AIDS is transmitted by casual contact. This in turn reflects on the quality of the HIV education and awareness programmes launched by the government at the State level. In most cases, such programmes were absent. In some States HIV/AIDS education is introduced in Standard VIII or later, when the majority of children, especially girls, are no longer in school. According to the report, AIDS education often revolves around the theme of abstinence and does not address gender roles and the sexuality of children. In Kerala, teachers hesitate to mention sex and condoms and often tell the students to protect themselves, without specifying how.

THE problems faced by HIV/AIDS children are compounded by gender discrimination. The report says that the lower status of women in Indian society makes it harder for them to access health care. Girls who may drop out of school because of early marriage are sometimes unable to access health services and do not have the negotiating power to refuse sex with their husbands or demand that they use condoms. Women whose husbands have died of AIDS are often thrown out of their homes. The discrimination that women and children face in employment, education, property ownership and inheritance may also make them unable to survive economically.

The government's response to the problem of discrimination faced by HIV/AIDS patients is limited to issuing guidelines and policies through the National AIDS Control Organisation (NACO). Asked about how they dealt with children affected by HIV, many government officials said that this was an issue to be handled by the Health Ministry.

The report points out that all government departments at the State and national levels, including those responsible for education, health and child protection, should take steps to implement NACO guidelines to deal with the problem of discrimination. Thus the Central and State departments in charge of education should ensure that children are not excluded from school because of their or their guardians' HIV status and that they are not segregated and abused in school. Similarly, the Ministry of Social Justice and Empowerment and its State-level counterparts should ensure that orphanages and other institutions follow non-discriminatory policies and provide children in their care with information that is accurate and appropriate to their age. The Ministry of Social Justice and Empowerment, in its 2002-03 annual report, makes no mention of HIV/AIDS.

In December 2003, the Health and Family Welfare Ministry announced a plan to provide free anti-retroviral treatment (ART) to about 1,00,000 children, mothers and others in six States with high prevalence of HIV/AIDS. The programme started in a small way in April 2004. The United Progressive Alliance government has indicated that it will continue with this programme. The report points out that in addition to ART, HIV/AIDS patients are in need of other basic health facilities. It also highlights the need to ensure that marginalised sections such as Dalits, street children, and children of sex workers are not discriminated against in the administration of ART.

The government puts AIDS orphans in institutions that do not generally provide adequate care. It has no control over private institutions, which reject HIV-positive children. The report observes that though there are no substitutes for well-run government programmes, programmes conducted by non-governmental organisations (NGOs) can serve as models. NGOs avoid putting children from economically fragile families in institutions and instead look at options like community adoption and foster care. But finding alternatives to institutions necessarily means addressing the issue of discrimination within the community.

The Lawyers Collective's HIV/AIDS Unit, on a request from NACO, is drafting a Bill on HIV/AIDS after a series of consultations. The report strongly recommends that the government enact and enforce a national legislation that prohibits discrimination against people living with HIV/AIDS and their families in health facilities, schools, places of employment and other institutions. It also suggests a mechanism that can receive complaints from victims and guardians and decide on compensation, if any.

The report is an important step towards highlighting and critiquing the government's policy on HIV/AIDS patients.

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