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Appendix

Report of the National Conference on Human Rights and HIV/AIDS

NEW DELHI, 24-25 November 2000

Organised by National Human Rights Commission; In Partnership with National AIDS Control Organisation, Lawyers Collective, UN Children's Fund and UN Joint Programme on HIV/AIDS

Recommendations

The recommendations emerging from the group discussions are presented as a series of action points that seek to feed into the response to HIV/AIDS both on national and State levels, and in reference to all partners, including the international and domestic non-governmental organisations, foreign governments and multilateral agencies, credit institutions, the business community/ private sector, employers’ and workers’ associations, religious associations and communities.

Another purpose of the action points is to complement the International Guidelines on HIV/AIDS and Human Rights1 with practical solutions in Indian context.

Consent and testing

  • All staff of testing centres and hospitals, both in public and private sector should be trained and sensitised, on the added value of the right of any person or patient to make an informed decision about consenting to test for HIV. Further the same staff need to be sensitised on universal precautions, provided with an appropriate infrastructure and conducive environment enabling them to respect the right of any person or patient to decide whether to test for HIV or not. This right to self-autonomy must be combined with the provision of the best possible services of pre-test and post-test counselling.

  • Persons detected at routine HIV screening at blood banks, should be referred to counselling centres at nearby health care facilities, for further evaluation and advice. 

  • The physical environment in which counselling and testing is carried out needs to be conducive and enabling to prepare HIV positive people physically, mentally, with accurate information on how to ‘live positively’. An important component of the enabling environment is sufficient time to internalise and consider the counselling and information provided to make an informed decision on consent to testing.

  • Official ethical guidelines and a comprehensive protocol should be developed on how to counsel and best protect the rights of the people who according to current legislation, or the practice of diminished authority, may not have legal, or social, autonomy to provide or withhold give their consent. This would include inter alia children, mentally disadvantaged persons, prisoners, refugees, and special ethnic groups.

  •  A comprehensive protocol on informed consent and counselling should be developed and be applicable in all medical interventions including HIV/AIDS. It needs to include testing facilities and processes in normal hospital setting, emergency setting and voluntary testing that take into consideration the window period.2 Although the counselling offered aims to advise testing for those who might feel they have been engaging in unsafe practices, the right to refuse testing must be respected. 

  • The availability and/or accessibility to voluntary testing and counselling facilities needs to be increased throughout India, including rural/remote areas, in an immediate or phased manner within previously defined and agreed timelines.

  • Guidelines for written consent procedures in the case of HIV/AIDS research need to be explored and developed.

    ‘The right to self-autonomy is a positive right to protect yourself - 

    Protecting the rights of the infected, protects the rights of the non-infected’3

    Confidentiality

  • Train and sensitise all staff in testing settings, blood banks, and care and support settings, both in public and private sector, on the right of any person or patient to enjoy privacy and decide with whom medical records are to be shared. 

  • Explore innovative and practical ways to implement respect for confidentiality in different settings: location for disclosure of diagnosis, specific procedures for the handling of medical journals and correspondence, reporting procedures, and confidential disclosure of status without the presence and pressure of family members, which is particularly relevant to infected women.   

  • The legal framework, administrative procedures, and professional norms should be revised to ensure enabling environments, which foster and respect confidentiality.

  • Develop guidelines/regulations for beneficial disclosure of testing results. Disclosure without consent should only be permitted in exceptional circumstances defined by law.

    Discrimination in Health Care

  • Train and sensitise care providers and patients on their respective rights in the context of HIV/AIDS, and combine it with training on universal precautions and with the supply of means of protection including post exposure prophylaxis (PEP) and essential drugs for all health care settings. Include to a greater extent trained and sensitised health care workers as trainers and role models to other health care workers. Information on HIV/AIDS should be available at all health care institutions for the public as well as for the staff, and should be most user-friendly.

  • Implement stigma reduction programmes and campaigns among health care professionals that prohibit isolation of HIV positive patients, provide appropriately prescribed treatment of opportunistic infections, and offer standard procedure for the protection of confidentiality. Include to a greater extent people living with HIV/AIDS in the design of stigma reducing campaigns, awareness programmes and care and support services.

  • Develop anti-discrimination legislation that practically enables protection of the rights of health care workers and patients, and that makes both the public and the private sectors accountable.

  • Establish a multi-sectoral consultative body on HIV/AIDS to provide advice and dissemination of information to health care workers.

    Discrimination in Employment

  • Adoption of national and State anti-discrimination legislation that should apply equally to both the public and private sectors and should prohibit discrimination in relation to work. This should include prohibition of pre-employment HIV testing, routine health checkups with mandatory HIV testing, reasonable accommodation, HIV friendly sickness schemes, entitlements, regulation on subsidised treatment costs, and compassionate employment.

  • Train and sensitise both employers/corporate leaders and employees/workers at formal and informal work places, and expand the awareness programmes to the surrounding communities, on the issues of HIV/AIDS, stigma and discrimination, leading to adoption of private and public corporate regulations on HIV/AIDS.

  • Train and sensitise law enforcement authorities or other authorities/sections of the community that might be closely connected with the workplace on the issues of HIV/AIDS, stigma and discrimination.

  • Raise awareness about the existing CII4 policy on HIV/AIDS and training in legal literacy related to both HIV/AIDS in the workplace as well as other work place regulations in force. Media could be of great use to such a campaign.

  • Commission an investigation on the anticipated costs for large and small Indian companies in the context of HIV, to prepare employers and workers in dealing with the consequences of HIV/AIDS. 

  • Introduce affirmative action/positive discrimination in the form of insurance and health care benefits and introduce medical insurance schemes to cover HIV positive employees.

  • Increase focus on workplaces with special vulnerabilities: introduce interventions training and sensitisation programmes within the armed forces, and design training and sensitisation programmes that are child- youth- and women friendly to be used in the workplaces where they are represented.

    Women in Vulnerable Environments

  • Effectively share accurate information on HIV (including transmission modes, sexually transmitted diseases (STD), preventive and curable aspects, treatment, drugs and counselling) to different categories of women in varied innovative, culturally adapted ways all over India.

  • Adopt legal changes to empower women for equality in areas such as property rights, domestic violence and marital rape, and protect the right to association for any groups of women working for collective interests.

  • The rights of women to provide or withhold informed consent, for HIV testing, must be protected. Social barriers that limit the free exercise of such a right by women must be overcome through appropriate educational and administrative measures.

  • All pregnant women should be provided an opportunity to have an HIV test, since vertical transmission of HIV can be effectively stopped by the use of low cost drugs in pregnant women who test positive. Women, who test positive for HIV, during pregnancy, should be offered such treatment.

  • Start alternate media communication programmes to reach out to as many groups of women as possible on the issue of empowerment of girls and women and elimination of misconceptions, myths and stereotyping related to male and female sexuality. Remove silence about sexuality in the development of policies, guidelines, project management and programming as well as within prevention messages.

  • Increase programmes directed at informing and involving men in the response to HIV/AIDS by opening up discussion on sexuality and gender differences, challenging cultures of shame and blame.

    Children and Young People

  • Ensure that the response to children and young people is shaped and driven by their rights guaranteed under the CRC5, and also, their overall health needs as well as health education requirements. Train government officials, policy-makers, and healthcare providers to fully familiarise them with the contents of CRC.

  • Create innovative mechanisms to inform children and youth on safe sex and other sexual health issues and ensure that such information is related to their cultural context and age groups. Extensively use mass media and the education system to disseminate relevant information. The information and advocacy campaign should be subsidised by the Government.

  • Redesign the health care services, including contact points/counselling services, to become more child- and youth friendly, and accessible.

  • The limitations of the legislation related to children and young people need to be addressed. For instance, the Juvenile Justice Act (JJA) should be revised to facilitate the shift to alternate methods of providing non-custodial care. A law covering sexual abuse of boys and girls should be adopted. Legal remedies need to be made accessible to children and youth.

  • Develop a clear policy for how young people wishing to go through an HIV test can do so voluntarily and without breach of confidentiality vis-à-vis legal guardians or others.  

    People Living with or Affected by HIV/AIDS (PWHA)

  • Formulate institutional guidelines with standards placing the issues of PWHA in a larger framework.

  • Scale up availability and access to appropriate health care for PWHA within mainstream services (including increase in availability of voluntary testing centres). Explore practical ways to ensure that the right of PWHA to treatment of opportunistic infections is promoted, respected and protected in practice. This should include efforts to reduce stigma and discrimination in the health care system, reduction of the cost as well as increase of availability and affordability of drugs.

  • Commission a study on the WTO6 regime post 2004. Lobby with the UN agencies, including the OHCHR7 to work for affordable drugs, and lobby towards Indian capacity building and opportunities for domestic drug manufacturing. Organise a workshop on WTO and TRIPS8 with reference to the issue of future access to drugs and anti-retrovirals.

  • Ensure ways to protect everyone’s right to information about HIV/AIDS, means of protection and support available for ‘positive living, among others, by strengthening the quality control of the services and drugs, and access to information on policy of all partners. This includes the training of testing technicians and physicians on HIV/AIDS technical aspects.

  • Increase legal literacy among PWHA and communities by community training programmes and integration of legal literacy messages in prevention messages. Ensure access to legal remedy in case of violations of the rights guaranteed

  • Review information, education and communication (IEC) strategies with the aim of reducing stigma while preventing HIV/AIDS. For this purpose, explore the role of public broadcasting companies, and introduce tax relief for private broadcasting channels to allow public broadcasting on issues related to HIV/AIDS. Train and sensitise the media through workshops. Lobby for the inclusion of HIV/AIDS issues in the Right to Information Bill.

  • Immediately review legislation that impedes interventions (such as Section 377 IPC9), as well as feasible anti-discrimination legislation, health legislation and disability legislation to be more supportive to people living with HIV/AIDS, prevention, care and support initiatives. Include HIV/AIDS issues in the Right to Information Bill. Introduce affirmative action for HIV positive people in the employment sector.

    Marginalised Populations

  • Revise and reformulate laws and processes (such as Section 377 of the Indian Penal Code and the NDPS Act10 ) to enable the empowerment of marginalised populations and reach them with HIV/AIDS prevention messages as well as care and support mechanisms.

  • The revision of the legislation must seek to mitigate the socio-economic factors that cause people’s marginalisation as well as unsafe practices. 

  • Legalise any sexual activities undertaken with consent between adults, and in connection with this adopt a clearly defined age for sexual consent.

  • Legitimise and expand innovative harm reduction programmes to reduce harmful practices including needle exchange and unsafe sexual activities, and expand condom distribution among all marginalised populations.

    General

  • A comprehensive strategy to prevent and control HIV-AIDS should combine a population based approach of education and awareness enhancement with strategies for early detection and effective protection of persons at high risk.

  • An Action Plan for implementation of these recommendations should be developed with focus on specific areas of action and prioritised sequencing of recommendations for early implementation within each of them. This may be done through a working group comprising of representatives from the NHRC, Ministry of Health and Family Welfare, Government of India and UNAIDS who will identify the pathways of action and the agencies for implementation.

    Respecting Human Rights  - crucial in dealing with HIV/AIDS

    ‘Respect for Human Rights helps to reduce vulnerability to HIV/AIDS, to ensure that those living with or affected by HIV/AIDS live a life of dignity without discrimination and to alleviate the personal and societal impact of HIV infection. Conversely, violations of Human Rights are primary forces in the spread of HIV/AIDS. … Implementing a Human Rights approach is an essential step in dealing with this catastrophic threat to human development.’11

    (PUBLISHED IN THE EXTRAORDINARY GAZETTE OF INDIA, PART-I, SECTION-I)

    NO. F. 6-15/98-CW

    GOVERNMENT OF INDIA

    MINISTRY OF HUMAN RESOURCE DEVELOPMENT

    DEPARTMENT OF WOMEN AND CHILD DEVELOPMENT

    New Delhi, the 9th February, 2004

    Subject:- National Charter for Children, 2003

    RESOLUTION

    The Government of India have had for consideration the question of adopting a National Charter for Children to reiterate its commitment to the cause of the children in order to see that no child remains hungry, illiterate or sick. After the consideration, it has been decided to adopt the National Charter for Children enunciated below:-

    National Charter for Children, 2003

    Whereas the Constitution of India enshrines both in Part III and IV the cause and the best interest of children, insofar that:

    The State can make special provisions for children, (Art 15 (3))

    The State shall provide free and compulsory education to all children of the age of six to fourteen years,  (Art 21.A)

    No child below the age of 14 years shall be employed to work in a factory, mine or any other hazardous employment, (Art. 24)

    The tender age of children is not abused and that citizens are not forced by economic necessity to enter avocations unsuited to their age or strength (Art. 39 e), and that

    Children are given opportunities and facilities to develop in a healthy manner and in conditions of freedom and dignity and that youth are protected against exploitation and against moral and material abandonment (Art. 39 f),

    The State shall endeavour to provide early childhood care and education for all children until they complete the age of six years, (Art. 45)

    Whereas it is a Fundamental Duty of a parent or guardian to provide opportunities for education to his child or ward between the age of six and fourteen year, (Art. 51A)

    Whereas through the National Policy for Children, 1974, we are committed to providing for adequate services to children, both before and after birth and throughout the period of growth, to ensure their full physical, mental and social development,

    Whereas we affirm that the best interest of children must be protected through combined action of the State, civil society, communities and families in their obligations in fulfilling children’s basic needs,

    Whereas we also affirm that while State, Society, Community and Family have obligations towards children, these must be viewed in the context of intrinsic and attendant duties of children and inculcating in children a sound sense of values directed towards preserving and strengthening the Family, Society and the Nation.

    And whereas we believe that by respecting the child, society is respecting itself,

    Now, therefore, in accordance with our pledge in the National Agenda of Governance, the following National Charter for Children, 2003 is announced.

    Underlying this Charter is our intent to secure for every child its inherent right to be a child and enjoy a healthy and happy childhood, to address the root causes that negate the healthy growth and development of children, and to awaken the conscience of the community in the wider societal context to protect children from all forms of abuse, while strengthening the family, society and the Nation.

    Survival, Life and Liberty

    1.a. The State and community shall undertake all possible measures to ensure and protect the survival, life and liberty of all children.

    b. In particular, the State and community will undertake all appropriate measures to address the problems of infanticide and foeticide, especially of female child and all other emerging manifestations that deprive the girl child of her right to survive with dignity.

    Promoting High Standards of Health and Nutrition

    2.a. The State shall take measures to ensure that all children enjoy the highest attainable standards of health, and provide for preventive and curative facilities at all levels especially immunisation and prevention of micronutrient deficiencies for all children.

    b. The State shall take measures to cover, under primary health facilities and specialised care and treatment, all children of families below the poverty line.

    c. The State shall take measures to provide adequate pre-natal and post-natal care for mothers along with immunization against preventable diseases.

    d. The State shall undertake measures to provide for a national plan that will ensure that the mental health of all children is protected.

    e. The State shall take steps to ensure protection of children from all practices that are likely to harm the child’s physical and mental health.

    3. The State shall take steps to provide all children from families below the poverty line with adequate supplementary nutrition and undertake adequate measures for ensuring access to safe drinking water and environmental sanitation and hygiene.

    Assuring Basic Minimum Needs and Security

    4. a. The State recognizes that the basic minimum needs of every child must be met, that foster full development of the child’s faculties

    b. In order to ensure this, the State shall in partnership with the community provide social security for children, especially for abandoned children and street children.

    c. State and community shall try and remove the fundamental causes which result in abandoned children and children living on streets, and provide infrastructural and material support by way of shelter, education, nutrition and recreation.

     

    Play and Leisure

    5. The State and community shall recognise that all children require adequate play and leisure for their healthy development and must ensure means to provide for recreational facilities and services for children of all ages and social groups.

    Early Childhood Care for Survival, Growth and Development           

    6. a. The State shall in partnership with the community provide early childhood care for all children and encourage programmes which will stimulate and develop their physical and cognitive capacities.

    b. The State shall in partnership with the community aim at providing a child care centre in every village where infants and children of working mothers can be adequately cared for.

    c. The State will make special efforts to provide these facilities to children from SCs/STs and marginalised sections of society.

    Free and Compulsory Primary Education

    7. a. The State recognises that all children shall have access to free and compulsory education. Education at the elementary level shall be provided free of cost and special incentives should be provided to ensure that children from disadvantaged social groups are enrolled, retained and participate in schooling.

    b. At the secondary level, the State shall provide access to education for all and provide supportive facilities from the disadvantaged groups.

    c. The State shall in partnership with the community ensure that all the educational institutions function efficiently and are able to reach universal enrolment, universal retention, universal participation and universal achievement.

    d. The State and community recognise that a child be educated in its mother tongue.

    e. The State shall ensure that education is child-oriented and meaningful. It shall also take appropriate measures to ensure that education is sensitive to the healthy development of the girl child and to children of varied cultural backgrounds.

    f. The State shall ensure that school discipline and matters related thereto do not result in physical, mental, psychological harm or trauma to the child.

    g. The State shall formulate special programmes to spot, identify, encourage and assist the gifted children for their development in the field of their excellence.

    Protection from Economic Exploitation and All Forms of Abuse

    8.a. The State shall provide protection to children from economic exploitation and from performing tasks that are hazardous to their well-being.

    b. The State shall ensure that there is appropriate regulation of conditions of work in occupations and processes where children perform work of a non-hazardous nature and that their rights are protected.

    c. The State shall move towards a total ban of all forms of child labour.

    9. a. All children have a right to be protected against neglect, maltreatment, injury, trafficking, sexual and physical abuse of all kinds, corporal punishment, torture, exploitation, violence and degrading treatment.

    b. The State shall take legal action against those committing such violations against children even if they be legal guardians of such children.

    c. The State shall in partnership with the community set up mechanisms for identification, reporting, referral, investigation and follow-up of such acts, while respecting the dignity and privacy of the child.

    d. The State shall in partnership with the community take up steps to draw up plans for the identification, care, protection, counselling and rehabilitation of child victims and ensure that they are able to recover, physically, socially and psychologically, and re-integrate into society.

    10.a. The State shall take strict measures to ensure that children are not used in the conduct of any illegal activity, namely, trafficking of narcotic drugs and psychotropic substances, begging, prostitution, pornography or violence. The State in partnership with the community shall ensure that such children are rescued and immediately placed under appropriate care and protection.

    b. The State and community shall ensure protection of children in distress for their welfare and all round development.

    c. The State and community shall ensure protection of children during the occurrence of natural calamities in their best interest.

    Protection of the Girl Child

    11. a. The State and community shall ensure that crimes and atrocities committed against the girl child, including child marriage, discriminatory practices, forcing girls into prostitution and trafficking are speedily eradicated.

    b. The State shall in partnership with the community undertake measures, including social, educational and legal, to ensure that there is greater respect for the girl child in the family and society.

    c. The State shall take serious measures to ensure that the practice of child marriage is speedily abolished.

    Empowering Adolescents

    12. The State and community shall take all steps to provide the necessary education and skills to adolescent children so as to equip them to become economically productive citizens. Special programmes will be undertaken to improve the health and nutritional status of the adolescent girl.

    Equality, Freedom of Expression, Freedom to Seek and Receive Information, Freedom of Association and Peaceful Assembly

    13. The State and community shall ensure that all children are treated equally without discrimination on grounds of the child’s or the child’s parents' or legal guardian’s race, colour, caste, sex, language, religion, political or other opinion, national, ethnic or social origin, disability, birth, political status, or any other consideration.

    14 All children shall be given every opportunity for all round development of their personality, including expression of creativity.

    15a. Every child shall have the freedom to seek and receive information and ideas. The State and community shall provide opportunities for the child to access information that will contribute to the child’s development.

    b. The State and community shall undertake special measures to ensure that the linguistic needs of children are taken care of and encourage the production and dissemination of child-friendly information and material in various forms.

    c. The State and community shall be responsible for formulating guidelines for the mass media in order to ensure that children are protected from material injuries to their well-being.

    16 All children shall enjoy freedom of association and peaceful assembly, subject to reasonable restrictions and in conformity with social and family values.

    Strengthening Family

    17 a. Every child has a right to a family. In case of separation of children from their families, the State shall ensure that priority is given to re-unifying the child with its parents.  In cases where the State perceives adverse impact of such a re-unification, the State shall make alternate arrangements immediately, keeping in mind the best interests and the views of the child.

    b. All children have a right to maintain contact with their families, even when they are within the custody of the State for various reasons.

    c. The State shall undertake measures to ensure that children without families are either placed for adoption, preferably intra-country adoption, or foster care or any other family substitute services.

    d. The State shall ensure that appropriate rules with respect to the implementation of such services are drafted in a manner that are in the best interest of the child and that regulatory bodies are set up to ensure the strict enforcement of these rules.

    e. All children shall have the right to meet their parents and other family members who may be in custody.

     

    Responsibilities of Both Parents

    18. The State recognises the common responsibilities of both parents in rearing their children.

    Protection of Children with Disabilities

    19. a. The State and community recognise that all children with disabilities must be helped to lead a full life with dignity and respect. All measures would be undertaken to ensure that children with disabilities are encouraged to be integrated into the mainstream society and actively participate in all walks of life.

    b. State and community shall also provide for their education, training, health care, rehabilitation, recreation in a manner that will contribute to their overall growth and development.

    c. State and community shall launch preventive programmes against disabilities and early detection of disabilities so as to ensure that the families with disabled children receive adequate support and assistance in bringing up their children.

    d. The State shall encourage research and development in the field of prevention, treatment and rehabilitation of various forms of disabilities.

    Care, Protection, Welfare of Children of Marginalized and Disadvantaged Communities.

    20. The State and community shall provide care, protect and ensure the welfare of children from  marginalized and disadvantaged communities, support them in preserving their identity, and encourage them to adopt practises that promote their best interest.

    21. The State recognises that children from disadvantaged communities and weaker/vulnerable sections of the society are in need of special interventions and support in all matters pertaining to education, health, recreation and supportive services. It shall make adequate provisions for providing such groups with special attention in all its policies and programmes.

    Ensuring Child Friendly Procedures

    22. All matters and procedures relating to children, viz. judicial, administrative, educational or social, should be child friendly.  All procedures laid down under the juvenile justice system for children in conflict with law and for children in need of special care and protection shall also be child-friendly.

    (KASTURI GUPTA MENON)

    Secretary to the Government of India

    Additional Stories of Children Affected by HIV/AIDS

    Sajeesh P. had been living in an NGO-run home for women and children living with HIV/AIDS for almost three years when we interviewed him.  At thirteen years old, he was small and emaciated, lying down to rest on and off as we spoke.  He told us about how he came to live at the home:

    When I was ten years old, my mother died.  Then my father died five days later.  After my father died, I went to live with my grandmother and my uncle.  I went to school for a while, but then I stopped because I had to walk a long way.  My uncle used to work in the fields, and I would go and watch him work.  I would climb trees and eat mangos. . . .

    When I got sick at my grandmother’s house, they didn’t take me to the doctor.  The first time I went to a doctor was when I went to the World Vision clinic [in Chennai in 2000].451

    According to staff at the home, when Sajeesh’s uncle and grandmother brought him to the home, about three hours from their village, they said, “Please take care of him because if he’s sick at home, we can’t do our work, and we are living on daily wages.  Sometimes we have to lock him up and go to work.  If he’s at home, we have to care for him.  We lose our wages, and we have nothing for our whole family.”452

    Without disclosing that Sajeesh was HIV-positive, staff at the home enrolled him in the fourth grade of a local government school.  However, he had problems there.  “Usually the other kids would not interact with me,” he explained.  “I had a big rash and I wouldn’t go to school because they made fun of me and wouldn’t touch me.  So I didn’t want to go.”453  According to the staff, he would beg them for cream to clear up his rash.454  Then they found a sponsor who agreed to pay for antiretroviral therapy for Sajeesh.  After he started taking the drugs, the rash disappeared and he returned to school.  Although he still had problems, he told us, he was able to study:

    Nobody really used to play with me.  But my teacher would teach me and be gentle and kind.  The school children would avoid me, and the teacher asked me where my parents were.  I said I stayed in the care home and my parents had died.  She told me to avoid the other children because they might hit me.455

    But Sajeesh gradually became more ill, and if he was absent for more than five days or if the home forgot to send a note, he said, “they would scold me and ask me why I didn’t come.”

    Finally, in June 2003, he got a lung infection and was no longer able to walk to school or sit in class for the whole day.456

    On the day that we interviewed him, Sajeesh had spent time resting, and he had made a picture of a butterfly, with sequined wings and a blue glitter body.  “If I get healthy again, I would like to go back to school,” he told us.  “If I went back to school, I would like the other children to play with me and to sit with me to eat.”

    Sajeesh also said he would like to go back to live with his family, but, NGO staff explained to us later, his family did not want to take him.  However, they said, they still hoped to train community volunteers to care for Sajeesh and find economic assistance for the family, so that Sajeesh could eventually go home.457

    Uma S. had been living with HIV for over four years when we interviewed her.  At thirty-six years old, she had three living children:  two sons, ages twelve and one-and-a-half, and a four-year-old daughter.458  The younger two children, who were both HIV-positive, had lived with her at an NGO-run home for the last six weeks, she said.  As we spoke, her daughter played enthusiastically with an orange ball while the baby alternately slept and cried.  Her older son had never been to school and, she told us, she no longer knew where he was.

    More than seven years before, Uma had left her first husband because, she said, “he had too many women in his life.”  Promising a job in Bombay, another man sold her, with her oldest son, to a brothel.  “They told me I had a debt,” she explained, “but they didn’t say how much.  I wasn’t paid.  I was never even given clothes and toiletries, like soap.  We used to buy these things when the customers would give us a little money. . . .  Food was the only thing that they ever gave us, but for that we had to pay a big price. . . .  We were completely trapped.”  While she worked, her son would play outside, she said.

    After around two years, she became pregnant and after that, she explained, “they didn’t want me.  They bought me a train ticket [back to Chennai] and gave me that and 1,000 rupees [U.S.$21].  This was all they ever gave me.  They probably gave me that only because I was pregnant.”

    Back in Chennai, she had a stillbirth and met her second husband.  They married and lived together on the pavement. 

    My husband was a casual laborer for daily wages.  If he got some job, he would go.  My eldest son would earn 10 to 12 rupees [about U.S.$0.25] a day to support the family.  My son was a rag picker to support us.  I am still ashamed of that.  I didn’t even want to say it to you.  But we wouldn’t have been able to survive.

    Uma first tested HIV-positive when she was pregnant with her daughter and went to a hospital for a pre-natal examination.  However, she said, she did not go back to the hospital to give birth and so did not find out the results until much later: 

    I delivered at home.  The hospital was trying to trace me, but they couldn’t find me because I was living on the pavement.  When I went back with my last child, in the second stage of labor, they told me I was positive and gave a single dose of Nevirapine459 to me and my child but it didn’t work.

    Uma did not tell anyone outside of her family that she was HIV-positive.  “Every time my little boy fell sick and had chronic diarrhea, we would only use the evil eye as an excuse.”  She had not even told her older son:  “Earlier when I was a little sick, my elder sister told my son that I would die.  He was very traumatized and crying all the time.  So I didn’t want to tell him anything else.”

    In 2003, Uma saw a man living on the pavement get sick and die.  She believed he had AIDS, so, she said, when her youngest son became very sick, she decided to seek help.  Someone told her about the World Vision clinic, and with her two small children, she was admitted to their care home.  She left her older son with her husband, but, she said:  “After I left the pavement and came here, the boy ran away because my second husband wasn’t willing to care for him.  When I was there, he [my husband] wasn’t happy, but I was there.  He would scold and hit the boy.  Now I don’t know where my son is.”460

     


    [451] Human Rights Watch interview with Sajeesh P., Chennai, Tamil Nadu, November 11, 2003.

    [452] Human Rights Watch interview with NGO staff, Chennai Tamil Nadu, November 11, 2003.

    [453] Human Rights Watch interview with Sajeesh P., Chennai, Tamil Nadu, November 11, 2003.

    [454] Human Rights Watch interview with NGO staff, Chennai Tamil Nadu, November 11, 2003.

    [455] Human Rights Watch interview with Sajeesh P., Chennai, Tamil Nadu, November 11, 2003.

    [456] Human Rights Watch interview with NGO staff, Chennai Tamil Nadu, November 11, 2003.

    [457] Human Rights Watch interview with NGO staff, Chennai Tamil Nadu, November 11, 2003.

    [458] Human Rights Watch interview with Uma S., Chennai, Tamil Nadu, November 12, 2003.

    [459] Nevirapine is an antiretroviral drug that is used to reduce the risk of HIV transmission in utero or during childbirth.

    [460] Human Rights Watch interview with Uma S., Chennai, Tamil Nadu, November 12, 2003.


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