Dhirendra Varma is 14, but looks just eight.
In Lucknow, under the watchful eyes of his father, he takes his tuitions in an air less back room of his father's hardware store. From school, to store, it is a closely watched routine, which the boy follows with his younger brother Pankaj, seven. The motherless boys have six other siblings and shrug off the need for peers as playmates. Their father has also warned them of the "dangers" that lurk in their middle class neighbourhood to keep them from mingling with the other kids.
Dhirendra and Pankaj are HIV positive, like 70,000 other children in the country. The National Aids Control Organization (NACO) puts the number of full blown AIDS cases in the 0-14 age group at 5,596 as on August 31, 2006.
A march by the Indian Network for People Living with HIV/AIDS (INP+) demanding the introduction of HIV/AIDS Bill in Parliament. The event took place in Lucknow earlier this month. Pic: U.P. network of Positive People.According to statistics from the Union Ministry of Health and Family Welfare at the current rates, 21,000 children will be added to this number every year. But this disturbing figure might be misleading as UNICEF India pegs the number of infected children at 220,000. This also could be a deceptive figure as the current HIV/AIDS programmes reach only 15% of India's young people.
Like most other infected children their age, the Varma brothers are ignorant of their status. Their father Ramesh Varma reasons that he is only "protecting" his children, both from the burden of knowing and the jibes of peers and teachers. Hence their status remains a secret from even his other children.
This secrecy means the children must take the morning dose of their medicine before they leave home at 7 a.m., often on empty stomachs. The elder siblings, like the boys' teachers are not expected to care for them.
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With a sad drop of the jaw Dhirendra says he does not get high marks in class. "I am poor in English", he attempts to explain in surprisingly good language.
The boys are not alone in their predicament.
According to Future Forsaken: Abuses Against Children Affected by HIV/AIDS in India, 2004, a report published by the Human Rights Watch, USA, most positive children manage to attend school only by hiding their status. While this might enable them to gain admission and remain in school, it keeps them from receiving special measures that will prevent them from dropping out or better protect their own health.
Anil Kumar Singh, president of Savera, a Kushinagar-based organisation that works with people living with HIV/AIDS (PLHAs) says that children cannot be looked upon in isolation because of their dependent status. Kushinagar is a district in eastern U.P., best known as the place where Gautam Buddha preached his last sermon in 543 B.C.
"Most children begin to face stigma and deprivation even before the death of a parent or before their own status is revealed. Sick parents mean loss of income and children, especially girls are pulled out of schools to play the role of care givers and in many cases wage earners. Orphans of infected parents are often abandoned by the extended family and end up on the streets, open to further exploitation," explains Singh.
In the Indian case, the last problem has been compounded by the lack of community based and institutional care systems. The joint/extended family network which had, for centuries taken in the old and ailing within its folds has reacted with horror to the AIDS epidemic.
A society sans awareness and emphathy
Take the case of Baby Gond, a 32 year old illiterate woman from Kushinagar's Harka village. In January 2005, Gond lost her husband. The in-laws promptly turned Gond and her two children (who are not infected) out of the house, forcing them to stay in the cowshed. With help from a local NGO and the district administration she managed to re-gain entry into the home but was forced to set up a separate kitchen.
Gond's case was further twisted by a property angle as the in-laws were demanding that she and her children give up all rights on the deceased's wealth.
This August, Harka witnessed another case of discrimination when Nirmala Devi a low caste widow cooking the mid day meals in a primary school was ousted from her job when her positive status became known. Her children, an 8-year-old positive son and a 10-year-old daughter, were also hounded out of school.
The district magistrate intervened and reasoned with the school headmaster, the village headman and village elders. While they relented other villagers remained adamant that they would not allow their children to eat the food cooked by Nirmala. They were also scared of their children catching the infection if Nirmala touched the school handpump.
While the children are back in school, government intervention has not been able to get Nirmala her job back. This lack of awareness can be attributed to the dismal performance of the UP State Aids Control Society (UPSACS). UPSACS was set up in 1999, during phase II of the National AIDS Control Programme. It works on counseling, surveillance, testing and clinical management, preventive strategies, capacity building, innovative interventions and developing culturally appropriate messages. In addition it runs school and family awareness programmes.
An Action Aid supported study on the Scenario of HIV Vulnerability and Prevalence in Uttar Pradesh, 2006 found that in a sample size of 17,516 government school students 30 per cent felt that HIV-positive people should be kept in isolation while 78 per cent were of the view that such persons should not be allowed to enter schools.
Perceptions such as these have forced a partial disclosure of five-year-old Avtar and his three year old sister Tanuja Singh's status. The orphaned siblings live at Shanti Niketan, a short stay home and care centre for PLHAs, run by the Medical Sisters of St.Joseph on Lucknow's outskirts. A year ago, they were left at the centre by grandparents who live in Chandigarh.
When Sister Lalita, administrator, Shanti Niketan took the two for admission to a nearby missionary school, she was convinced that the school management had to know of the siblings' status to ensure their physical well being. "Last week Avtar fell off from a swing and scrapped his knees. We have given the school medical gloves for use when providing first aid to the children in such cases," she says.
On the principal's advice however, the children's status has not been revealed to the teachers. Next month the centre will organize an awareness workshop at the school to better acquaint teachers with the issue, but not necessarily divulge the siblings' status.
Teachers are part of the problem, not the solution
This caution is hardly surprising given that teachers have been the strongest opponents of education that will create HIV/AIDS awareness. Earlier this year government schoolteachers across the state made bonfires of social studies textbooks meant for classes 9 and 11. They were protesting a single 10-page lesson on "adolescent awareness" that anyway painted the HIV/AIDS issue in bold moralistic strokes.
In Lucknow, government schoolteachers burn books and flip charts to protest sex education. Pic: Puja Awasthi.Their chant was one that has been repeated in many other states (Gujarat, Madhya Pradesh, Maharashtra Karnataka, Kerala and Chhattisgarh) that such education would "corrupt" the minds of children and cause "sankritik pradushan" (cultural pollution). The government hastily withdrew the texts and ordered a re-evaluation of the books. The teachers chose to stay away.
College principal Prem Kumar Yadav, nodal officer for the now defunct adolescent education programme expresses alarm at this opposition. "Dealing with adolescent curiosities that come with physical changes cannot be obscene. We are dealing with a population that initiates sexual intercourse at a much younger age. If we don't provide them with information, they will turn to questionable sources, which distort issues. But in this state, so great is the stigma attached to HIV/AIDS that even teachers who conducted the adolescent awareness programme were branded AIDS wali teacher' (literally the AIDS teacher)".
In September, the state's High Court pronounced that sex education could not be promoted "under the guise" of AIDS awareness and instead compulsory moral science education would do just as well.
Fallouts of such pronouncements have compounded problems for the state's PLHAs most of who have declared their status under the umbrella of the UP Network for Positive People (UPNP+).
Among them, Kamlesh Kumari, 33, who lives in a rural fringe of India's leather capital, Kanpur with her 9-year-old daughter Pinki.
Both are HIV positive.
Kumari, forsaken by her in laws, found the courage to acknowledge her status only after coming in touch with the UPNP+. However while she travels across the district to counsel others, she has not come out in her own neighbourhood.
Till two years ago, Pinki attended an English medium school. Then some parents got wind of her status and children refused to play with her or share tiffins. "I changed her school and told the teachers that she was being treated for some weakness. That way her bouts of illness, and her absence from school don't draw much attention", says Kumari.
Like Dhirendra, Pankaj, Avtar and Tanuja, Pinki who dreams of becoming a doctor, studies in a Hindi medium school, as such schooling is assumed to be less taxing than the demands of an English medium education.
Poor progress in child health, UPSACS not doing much
All these might appear to be isolated incidents as UP is still considered a low prevalence state which has reported only 1.47 per cent of the full blown AIDS cases counted in the country. Government figures claim that of the state's 70 districts many are yet to report even a single HIV infection, while others have only single digit cases. But when these figures are pegged against a larger backdrop, the picture becomes gloomier.
UP is vulnerable for a variety of reasons. Among them: one fourth of all inter state migrants in the country are from the state, voluntary testing and the presence of testing centres in big hospitals and medical colleges that are often inaccessible and a generally unresponsive health system.
While there is a dearth of data on the condition of HIV+ children in the state, some calculations can be made from other health indicators. According to the National Family Health Survey-3 (2005-06) the infant mortality rate in the state is 73 per thousand. That is a small improvement over the 89 per thousand reported in the NFHS 2 (1998-99). The figures for vaccination coverage for children between the ages of 12 to 23 months are 23 and 20 per cent, while the numbers of stunted and underweight children at 46 and 47 percent are only slightly better than the 56 and 52 per cent reported earlier.
A general state of poor progress in child health can be further examined against the allocation and expenditure of funds by UPSACS, which as noted earlier, has fared poorly in raising awareness.
For the financial year 2007-08, of the allocated Rs.29.9 crores, the society had till July 2007, spent only Rs 8.7 crores. In 2004, a report of the Comptroller and Auditor General of India rapped UPSACS for poor utilisation of funds. Between 1999-2004 (the period of the National Aids Control programme-II), the society was allocated Rs.146.76 crores, of which only Rs.54.81 crore were spent.
The only thing going UP's way may be that discrimination against children with HIV/AIDs is widespread throughout the country. UP may be yet to report the levels of discrimination that have been witnessed in the South such as the 2003 case of Bency and Benson, positive orphans from Kerala or the more recent case of five HIV positive orphans who were turned out of their school in Kottayam, Kerala. However, there are no special efforts to be seen in U.P. such as one recently reported from Bangalore, where a city-based NGO plans to open, by 2008, a school where HIV+ children will be equally welcome.
Will a law help?
K K Abraham, President of the Indian Network for People Living with HIV/AIDS (INP+), Chennai, points to the proposed HIV/AIDS bill as another important step to counter discrimination.
The HIV/AIDS bill is an effort that dates back to 2002 to bring a separate law to protect the rights of PLHAs and has been drafted by the Lawyers Collective HIV/AIDS Unit. The collective, formed in 1981 consists of professional lawyers, law students and human rights activists, provides legal assistance to the underprivileged and undertakes public interest work. The draft has been prepared after thorough research of HIV/AIDS law in other countries and discussions with various stakeholders. In 2005, the draft HIV/AIDS Bill was submitted to the government. It is yet to be tabled in Parliament.
For Dhirendra and thousands of others like him who need a supportive environment today for a better tomorrow, that hope might be too distant to make a difference.