DiA volunteer Lydia Greenaway reflects on the stigma faced by people with HIV in India and a remarkable programme in Pune, where she has spent two months volunteering.
There are a number of human rights issues that concern people living with HIV, including the right to marriage and reproduction. With rife misinformation and misconceptions about the virus, many people fear HIV, and believe that a person with the virus should not be allowed to marry or have children. Sometimes attitudes go so far as to think that people with HIV should not be allowed in public areas, use public toilets or attend public education, often stemming from unfounded fears that the virus can be spread through touching or sharing food.
Yet in India, politics and the law have had their part in putting severe and unfair limits upon the lives of those living with HIV. A 1999 Supreme Court decision upheld that it is the duty of individuals with HIV not to get married and implied that they should not conceive. Women with HIV invariably opt to have an abortion, and many of these women have reported pressure from doctors to undergo the procedure. Although in past years these issues have been tackled and advances in knowledge and medical research have meant that women are increasingly able to choose to start a family without passing on the virus, it takes decades for people to become properly informed, and without adequate education about HIV, many of the fears about the virus, marriage and reproduction remain fully fledged.
In 2011 a political declaration on HIV was issued, asserting that ‘The full realization of all human rights and fundamental freedoms for all is an essential element in the global response to the HIV epidemic, including in areas of prevention, treatment, care and support,’ naming the right to marry and start a family as one of the fundamental rights all humans, no matter what their HIV status, are entitled to.
This is where Wake Up Pune comes in. Run by one of Development in Action‘s partner NGOs, Deep Griha Society in Pune, Wake Up Pune is an awareness campaign programme that endeavours to break the silence about HIV and to eradicate the stigma that surrounds the disease, often experienced to be more damaging to a person’s quality of life than the virus itself.
The Wake Up Pune campaign believes that HIV and stigma must not be permitted to limit people’s choices. The World Health Organization categorizes HIV as a chronic condition, in the same category as diabetes. With appropriate medication and support, people with HIV can live healthy lives, including making independent choices such as starting a family.
But with such stigma surrounding the condition, how can those affected meet potential partners? One event organised by Wake Up Pune is Melava+, a matrimonial meet-up for people living with HIV, intended to provide a platform for people to find a life partner and get engaged.
When I went along, Melava+ was in its third year. Though I initially found the speed dating-style set up a rather ridiculous way to meet somebody intended for marriage, I gradually began to understand the tremendous importance that Melava+ carried with it, and the sheer impact it could have on people’s lives.
The day was a huge success, welcoming people from several states across India. A positive speaker from Mumbai encouraged participants to live positively, love positively and refuse to give up the fight. In a touching testimony, couples who had married as a result of previous events spoke. After a few ice breaker games to get everyone talking, and lunch in the grounds of the beautiful Abul Kalam Memorial Hall in Koregaon Park, three couples came up to the stage to announce their engagement. Applauded by all and accompanied by their relatives, it was a wonderful event to not only organise, but simply to attend. The sense of love and community made for a very special atmosphere and it was an extremely rewarding day.
It appears an odd concept, committing to share your life with someone after a single exchange of words and a twinkle in the eye, but the cultural differences concerning marriage is something that really divides the Western world from India. Despite India’s rapid modernization, the phenomenon of arranged marriages has remained a steadfast tradition and getting engaged without years of dating is not quite the oddity we might consider it to be. A smile, a good conversation and parental approval is enough, particularly for those living with HIV, who are then able to care for one another and help each other through the difficulties that the virus and the stigma might present.
I felt extremely privileged to have been able to participate in the organisation of the event with Wake Up Pune. It has been an overwhelmingly interesting and rewarding few weeks and Deep Griha still has so much to offer.
The views expressed in this article are those of the author and do not necessarily represent the views of Development in Action.
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