While we are working on issues connected with HIV / AIDS, it is important to note that PLWHAs, and most importantly, Positive People should remain at the centre of decision making at all levels. When we speak of People Living with HIV / AIDS, we are talking of both infected and affected people. I have based my talk primarily on my experiences of working with a group of PLWHAs in Kolkata. The organization is called En-joy. Members of En-joy are not at the ASF because they are at another Conference in Chennai.

It is necessary to have PLWHAs as advocates for Positive Living. The message that PLWHAs wish to convey to the public is that positive people have a right to a productive life. The focus should not be on how someone got the virus but how individuals are coping with life once they know they are HIV positive.

PLWHAs often face stigma, despair and isolation. Disclosure of one’s positive status may often bring with it serious problems like loss of employment, loss of shelter, denial of treatment and so on. Coming together with other PLWHAs in support groups helps them come to terms with the situation and work out ways of leading a productive and positive life.

Large sums of money have been spent on awareness programmes for HIV/AIDS. However, it is necessary to take stock of the impact of the awareness programmes. A great sense of fear appears to have been created, and there seems to be an instinctive desire to shun / reject people who are HIV positive. The idea here ought to be for people to understand how the HIV virus gets transmitted, what may be done to prevent / contain the spread of the virus, how positive people maybe supported with treatment, employment, counseling etc.

Like many events / processes in life, the impact of HIV / AIDS on women is different from that on men. In a family affected by HIV / AIDS, the women have the responsibility of taking care of the sick in addition to their other roles of homemaker and wage earner. Also, where the husband is HIV positive, the woman has to cope with her husband’s HIV status, the impact of this status on the family, and so on. There have also been instances where women have been blamed for the husband contracting HIV, and even turned out of the family home. It has been found that married women’s natal families have been more supportive when a woman’s husband is found to be suffering from AIDS.

An ‘AIDS widow’ has to confront several problems. Right in the beginning, she has to cope with her own grief at the death of her husband. Added to this may be, hostile reactions from family and / or neighbours, decrease in income, uncertainty about living space. Accessing the right legal support for recovering her husband’s dues from employers and / or insurance companies becomes very important. It is also important that women have information about their rights of residence and inheritance in the marital home. Positive women need access to livelihoods and childcare. Very often, they have to battle alone to provide their children with an education. Her problems get compounded if any of her children is HIV positive.

Emotional support through counseling and other means like support groups becomes very important for positive women. Support from relatives, friends, community members is also crucial. Therefore, it is necessary to have HIV / AIDS education focusing on positive living for the general populace. Action Aid has popularized a participatory approach called Stepping Stones that allows communities to address issues around HIV / AIDS like sexuality, morality, gender relations and so on.

HIV positive men and women are working hard to mobilize and strengthen their voices in different forums. It is often felt that it is only the positive men from better off backgrounds who have acquired a voice in the movement. Like most movements, the class and gender issues have to be debated within the movement for rights of PLWHAs. Within the movement, there needs to develop a commitment to strengthen the voices of the poorest. Positive groups also need to recognize the fact that even though men and women may be partners in a common struggle, their needs and priorities may sometimes be different, and even conflicting. It is necessary for PLWHA to recognize and address the power issues between positive men and women and work out ways of forging a solidarity based on a recognition of differences.

• Strengthening the voices of PLWHAs , especially women, at all levels of decision making

• Providing non-threatening and practical information about HIV / AIDS

• Developing adequate and efficient infrastructure for treatment