From Breakdowns To Breakthroughs

The leadership and development programme for women and girls living with HIV in India
It was indeed an empowering experience for all of us women, and the few men, present at the Valedictory Session of the Leadership for Results (L4R) programme, where 17 undaunted, women living with HIV were lauded for their grit and determination on completion of this L4R training programme. Despite their HIV positive status, despite the trials and tribulations which all of them had faced, despite being disowned and discarded by their parents-in-law, there was no sign of gloom on their faces. Some bitterness, yes, but no resignation. They had successfully completed the L4R programme launched by the United Nations Development Programme (UNDP) for the first time in January 2011 in India, in partnership with the Positive Women's Network (PWN+).

The first session was held in January 2011 at Chennai with 27 participants who were selected, through a rigorous process, out of 98 candidates who had applied. Only 17 of them remained for the next session (the rest having dropped out due to some family problem or the other).The second session for reviewing their innovative action learning projects progress (called break through initiatives –BTIs) during the intervening 3 months period was held in New Delhi from 16‐20 May 2011.

On 20th May, 2011,the small auditorium at India International Centre was filled with positive energy exuding from these 17 positive women who had come from 10 different states of India, to share their experiences. Brimming with confidence and gathering strength from each other, no amount of cultural and/or language barriers could stop them from talking about their trials and tribulations, as well as their triumphs in the face of adversity.

Mr Oscar Fernandes, Member of Parliament (MP) and President, Forum of Parliamentarians on HIV/AIDS, remarked in his inaugural address that we need to take inspiration from these doughty women in order to become better leaders. He advised all positive people to increase their body resistance through regular practice of yoga, apart from taking medicines. He gave the example of a body builder from Manipur who is HIV+ but has build up resilience and strength through physical exercises. He promised all government support to such training programmes, for bringing more women out of their closets, and requested UNDP to train all the 98 women who had applied, and many more.

Whether it was Kousalya, President of PWN+ and now the brand ambassador of the Network, Padmavatty, President of Tamil Nadu PWN+, Lily from Manipur, Varsha from Maharashtra, Manisha from Gujarat, or Sita from Uttar Pradesh - all had similar tales of harassment, discrimination and societal apathy to tell. All had contracted the disease through their husbands, and yet faced the wrath of their in laws. They lamented the lack of education in many of them as a great stumbling block in their fight for their rights. Language was another barrier which prevented proper communication with each other at the national or even state level (Manipur itself has four different languages). But it was indeed heartening to see many of them trying to articulate in English, albeit falteringly. Nirmala, the sarpanch (village head) of a village in Chhatisgarh, though not HIV+, has been in the forefront of helping such women of her area to access treatment and lead a life of dignity. Barring a few, they were not camera shy, and did not care two hoots if the the world came to know of their HIV+ status, and rightly so. After all it is a disease like any other disease, the only difference being that along with a medical problem, it is also a problem of stigma, violence and sexuality.

All these women had  come a long way (in a short time) from  hesitant, fumbling ones, to quiet but determined ladies who can speak out her mind without any hesitation. It was heartening to see all of them exuding confidence, with not an iota of diffidence, as they took their turn to speak from the podium. All of them had been docile housewives, content to stay within the confines of their homes, till the adversity of their disease brought out the tigress in them. Circumstance had forced them to clutch on to the last straw, which was turned into a solid rock, thanks to this leadership training programme of UNDP.

It would be worth mentioning here that according to the latest UNAIDS global report on the HIV/AIDS epidemic, India has the second highest number of HIV positive people (after South Africa) with approximately 2.25 million people living with HIV, of which 39% are women. The burden of the epidemic rests largely on women. A study conducted by National AIDS Control Organisation and UNDP in 2006 on the socio‐economic burden of the impact of HIV in India demonstrated that: despite constitutional guarantees and legal safeguards, as high as 79% of HIV positive widows were denied a share in their husband’s property; more than 90% of the HIV positive widows had stopped living in their marital homes after the death of their husbands; and women account for more than 70% of the care givers of which some 21% are themselves living with HIV. The latest UNDP Global HDR 2010 also shows that India ranks 122 among 138 countries for which the gender inequality measure has been calculated.

 In this dismal scenario, more of such ennobling training programmes are needed to recognise, facilitate and develop the capacity and leadership of HIV positive women and girls and address directly their needs and rights as defined by them. As Ms Asha Menon, Member Secretary, Delhi State Legal Services Authority remarked, there are many laws to protect the rights of women and children in our country—in their family and in their work place. But the problem is that women are not aware of them. Lack of proper information and awareness prevents them from taking recourse to legal aid which is available free to them. She asked the women present there to bring about a change in the discriminatory attitudes of society against women, by giving equal opportunity of growth to sons and daughters. The change has to come from within.

Their trainers, Gulan and Sahdev, applauded them as being powerful beyond measure, who are capable of generating support, without getting any support. Great words of appreciation indeed.
Ms Cathleen Wiesen, Country Director, UNDP, saluted these women through a quote of Margaret Meade, ‘Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Shobha Shukla - CNS
(The author is the Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She is also the Director of CNS Gender Initiative and CNS Diabetes Media Initiative (CNS-DMI). She has worked earlier with State Planning Institute, UP. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)


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