Despite global initiatives to spread awareness and the discovery of antiretroviral therapies, stigma against HIV-infected patients is still prevalent among many countries. It has been associated with death, personal irresponsibility and more prevalently with certain behaviors or practices, such as homosexuality, drug use, infidelity, prostitution, that are not approved in many cultures. These so called unacceptable behaviors have resulted in patients being viewed with disgrace and shame rather than with compassion. Moreover, despite many awareness programs, myths still persist, which have added on to the fear for the disease, making it pervasive and leading to discrimination. As per the World Aids Day 2015 report, more than 50% of the patients in 35% of countries with available data, have reported discriminatory attitude. Unfortunately, this has resulted in wide-ranging consequences, affecting people’s reputation, livelihood, family lives and parenthood. It has also led to patients shutting themselves away from healthcare in fear of being shunned by society.
Social ostracization leading to secrecy
The social label of deviance has resulted in the ostracization of many not only from society but also from their own families. Many have been forced to live without families and refrain from starting families of their own. And that’s not all. The consequences of discrimination have also led to the spread of the infection. Some in fear of being disgraced and secluded from society have kept their HIV+ status confidential and married or had sexual relationships with healthy individuals endangering the lives of the latter as well. This has been the case with 28 year old Raya (alias) from Andhra Pradesh who was married to a boy residing in London. A year after the wedding, she was diagnosed HIV+ during her pregnancy, realizing that she had been infected by her husband. For others, who are more responsible, it can be an endless journey alone trying to find a partner who is HIV+.
Sometimes in tragedy we find our life’s purpose (Robert Brault) and for Anil Valiv, a Deputy RTO, Motor Vehicles Department, Maharashtra, the saying has been personified. In 2006, he lost a friend to the disease. But the pain inflicted by the disease along with the pain of social ostracism faced by his friend, etched a painful memory in his mind, urging him to launch positivesaathi, http://positivesaathi.com/, a matrimonial portal for HIV positive people. Aimed at helping HIV+ patients find life partners, the site also hopes to encourage participation from both men and women. The site helps HIV+ patients tackle the social taboos facilitating a platform where they can find life partners and start a family. It also helps to educate people that with the right and timely treatment and precautions, two positive patients can even have healthy children who are not infected with the virus.
Anil has been devastated by the loss and agonies faced by his friend. And even after a decade, tt still hurts him to remember that his friend’s own father refused to perform his last rites. It still hurts him to remember the longing and craving in his friend’s eyes for a family, for children. He recounts his friend’s endless trips to local hospitals in the hope to find a HIV+ woman as a life partner. And it is these painful memories that have urged Anil to launch a unique platform where HIV+ patients can meet and seek others for association or help, without the fear of being stigmatized. He realized that most people wished to keep their HIV status confidential, which made it more difficult for people to meet each other. He therefore came up with the idea of a website through which people could connect with each other while maintaining their privacy as desired by them. They could register under alias names but share photographs as well if they wished.
Initially, the response to the website was disappointing. However, with media coverage and support of doctors and NGOs, the website has now transcended urban and international borders. Today it boasts of many success stories. It has had a positive impact in many of the HIV+ patients’ lives, helping them heal better by being a mean for providing support and mental peace and acceptance through a family life. It has brought together people from across state and international borders, facilitating and providing a platform for meeting. There are cases where a Sikh man from Punjab, found a widow in Kolhapur district of Maharashtra, met in Pune and now reside in Punjab as a happy family. There are also cases where a 28 year old girl from Andhra Pradesh acquired the disease from her husband who was residing in London. She divorced him and lived alone with a child till she met another HIV+ partner, who also happened to be from her home state. The boy flew to UK to be with his new bride. And in all these, Anil has played a key role. Despite his busy schedule, he takes personal interest and initiatives to help anyone who approaches him. “It felt like my kids have got married” – said Anil after a HIV+ Canadian resident Indian got married to another HIV+ lady living in Mumbai. He organizes matrimony meets where people can come and interact with each other and also supports their travel expenses if one is in need. He funds these meets through his personal funds without the help of any sponsors or government aid. He has also been approaching NGOs and donors to support HIV+ orphans so that they may have a brighter future. But despite the success, hurdles are many. One of the main issues Anil faces is the low registration rate by women, 80 males to 20 females. Although free, very few women show up in the matrimony meets, possibly because of the added stigma brought on by society on the female gender.
PositiveSaathi: helping positive patients find their life partners
Anil’s PositiveSaathi has been more than just a matrimonial site. It has been a lifeline for many. In the words of Dr. Devdatta Gore, a trained allopathic surgeon from the small coastal town of Ratnagiri in Western India, diagnosed as HIV+, his true recovery started only when he found mental peace and acceptance to be at peace with himself and the world. Support of a family, a partner goes a long way to alleviate the sufferings inflicted on the patients by the social label of deviance and Anil’s PositiveSaathi aims to do just that.
Image credit- BBC, PositiveSaathi, Street Sense,Tribe of Lambs, Mid-day