From Breakdowns to Breakthroughs: HIV in India
The Leadership and Development Programme for Women and Girls Living with HIV in India
Shobha Shukla - CNS
May 23 2011
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 1620
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, Padmavati, 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 socioeconomic 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 countryin 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. Website: http://www.citizen-news.org
ENDS