Thursday, December 21, 2006

Why...?

Maybe a question I should have asked myself is, would I have been happier not being exposed to HIV awareness in India in this way, at the grassroots?
Would it be too much of a contrast to the way of life we live in the west, despite our best notions of helping? Would it cause me to question things about the world too much? Some questioning is good, but would it cause a wholesale re-structuring of the life I had grown comfortable with?
After all, "For in much wisdom there is much sorrow, and he who stores up knowledge stores up grief." (Eccleasiastes 1:18) .
Would this new wisdom of the battle at the grassroots create a new reality that was more dismal than my old reality, or would I find a way to help and make a difference, or would I find a group of people and a movement that was even more inspirational than my old reality?

Certainly many of my friends openly wondered what I was doing with my year in India, and why I doing it. I gave up my job, if one can call it that in the traditional sense, as a professional athlete to come to India. I knew I wanted to help and that I was in a position to help, at least in some capacity.

But, wasn't it enough for me to hope to help out in the future with an international organization like the UN, directing policy from an office in Manhattan or Geneva or somewhere, using my law degree to do...something...*something good* for *someone* else? Would that make me feel ok about myself and my efforts to help those who had not, simply because of the locations where we were born, the same opportunities that I had.

Some of this falls under the title WWLG (white western liberal guilt). A lot of it is caused by some of the western media coverage of the developing world that shows the dichotomy between *them* and *us*. It doesn't particularly emphasize the fact that we are all much more similar than that, everyone experiences joy and sadness, love and loss. The experience of life is certainly different between Beverly Hills and a slum in India though.
Would I have been happier just living a life in America with the vague knowledge in the back of my mind about the lives of those affected by HIV in India, or I am happier now that I know first hand that the images and press-releases about India can't convey the full impact of the situation?

Should my own personal happiness have anything to do with anything? Would I feel guilty being happy if I found out that maybe people suffered more greatly than I could have imagined?

While the quote from Ecclesiastes had stuck in my mind, I knew I had heard a counter to this somewhere, a quick search turned up a couple that I found especially relevant. "If knowledge can create problems, it is not through ignorance that we can solve them" (Asimov) and "It is no good to try to stop knowledge from going forward. Ignorance is never better than knowledge" (Fermi).

Before I came I knew that people often died in India and elsewhere due to AIDS, TB, malaria, dysentery or another disease that commonly kills due to low levels of sanitation and poverty but (other than AIDS-which can kill anywhere independently of those things) doesn't kill in the west. What I didn't know before I came to work at this level was what it would feel like to meet children who were orphaned by these things, and consequently what it would feel like to make them smile. That is something that happens at the grassroots that doesn't happen when you donate money at Christmas from the US (although don't stop doing that).

Would I have been happier not knowing of this pain and the agony of meeting people who have been disowned by their families for contracting HIV? Sometimes you wonder how the notion of happiness in your own mind has changed afterwards. Then you see them dancing at the Sarhara Christmas Party, smiling as the unbelievably caring staff and volunteers reach out to touch them and shake their hands-actions which their families have shunned---they seem happy.

Would I have been happier not spending seven hours online staring at a computer screen researching worldwide HIV and AIDS organizations and wondering how I can possibly get myself more involved and why the fuck am I sitting down when there is so much work to do? Once you know, once you've seen the work and the passion at the grassroots, you can't tear yourself away. It isn't just with HIV awareness, all actions at the grassroots are similar. Hans said that he had similar aspirations to mine, but once you get involved at the grassroots you realize that this is the way to help, and it isn't just *someone* you are helping by directing policy or directing donations, the *someones* have names and faces and smiles. It is like a Chinese fingertrap, entrance into the realm of action at the grassroots prohibits an exit back to a previous way of thinking. Once one has seen the work that is done here it becomes impossible to go back to a state of blissful ignorance. And mind you, I didn't think I was ignorant before, I thought I was very enlightened about the world, and I was certainly very happy and felt good about directing recycling initiatives and blood drives at home, and it certainly helped many people and at the time made me feel like I was doing my part to help. But now that I've been here and seen the work that is done at the grassroots by Indians and people from around the world, my perception of helping has changed.

Helping from a distance is good but, especially in India, the grassroots is arguably more important in many ways than giving money or helping from a distance. The grassroots is not an area where tradition dictates people involve themselves. Stigma and discrimination against those from lower social levels and those infected with viruses such as HIV exist and permeate society. Deep Griha has for 31 years extended itself to work and raise awareness and increase participation at this level where many do not act despite the clear need for action.

While India makes global headlines for its advances at the highest level of IT, perhaps the advances that will actually change India the most will occur at much lower levels of the economic and social strata. After all, 80 percent (over 900, 000, 000 people--3 Times the size of the USA) of India still exists on USD 2.00 or less per day, and lives in slums and villages, and not in the glitzy concrete and steel buildings sprouting up in Bangalore and Hyderabad and Pune and the covers of magazines and books touting the new India. HIV has infected 5.7 million Indians and affected millions more. It has split families and AIDS has orphaned children. It has the potential to cut the legs out from under a population as it blitzes through the 15-49 age group with 90% of the infections falling in this demographic and more than half hitting those between 15 and 24. Tradition and fear of stigmatization keeps some silent and nourishes the epidemic to grow through a society of people who find it within themselves to invite virtual strangers to dinner, but often can't bear the sight of a loved one who through no fault of their own is HIV positive.

It is not all gloom and doom here, there is much happiness with or without this work, perhaps just as much as in the United States or Britain or Switzerland, where, despite much more favorable circumstances financially and in areas of public health, not everyone is happy. The streetlife on Tadiwala Rd is as vibrant and lively as anywhere else. The issue for the grassroots HIV awareness campaigns becomes of trying to directly help people maximize their happiness through awareness of this virus, through compassion towards those that have it, and proactive efforts to quell its spread, and in doing so, hopefully changing long held stigmas and reversing the advance of HIV into the heart of India.

Wednesday, December 20, 2006

The Chaos Within - A Normal Christmas

Today was the Sahara Christmas party.

We took a ‘six-seater’ rickshaw to Wagholi.

Paul, Morgan, Rachel (down from Canada) and Hans in a six seater that generally packs in at least eight. We sat on our imagination.

A few weeks ago when Paul and I took a six-seater for the Sahara Diwali party we ended up discussing about how normal it was for us to take a six-seater and trundle off towards a care home on the outskirts of Pune for HIV+ people, to eat dinner with them and have a laugh.

How did this happen?

Empty question really… it just did.

It was normal… it was also normal for us to be booted from the rickshaw and forced to walk the rest of the way dodging fire crackers and rockets that came at us from every direction… or so it felt like at the time.

It was normal today to rock up at Sahara and see the clients all gathered in the forecourt, and to observe the Sahara team take some time off to play carom. We played carom too as we waited for Santa to arrive. He did. A care worker in a red Santa suit with a white beard – not a simple cotton wool job either – wig and pillow tied firmly around him to allow for the rotund Santa vibe.

We sang carols; words lost in recesses we didn’t know existed found their way back to be sung. The ‘professional’ choir from St. Patrick’s led by Kim turned up and we amateurs stood back as the guitar began to pluck and the youth sang ‘Happy Birthday’ to Jesus. They went from room to room with Saba blowing soap bubbles that little Pratam in particular enjoyed chasing.

In the first room, the men’s ward, I watched a Sahara client near the end lie there as bubbles gently landed on him and disappeared… Sam the Sahara counsellor had already informed us that this guy was about to leave us. The other clients in the room enjoyed the music, the touch, the life that continued.

Outside in the forecourt we danced. We couldn’t help ourselves. As soon as Sanjay, one of my HIV+ clients who is partially paralysed struggled to his feet and began to move I was there with him, as was the rest of us dancing all afternoon.

It was normal.

Tomorrow evening is the DISHA Christmas party.

There will be more dancing as over 60 DISHA clients and their families come together to eat pizza and have fun. The kids in particular enjoy the music, but as our DISHA gathering have shown almost all of us present dance.

It is primeval na…

There will be no host of angels rejoicing at the birth of life… or will there be?

That is not an empty question… the angels will be there, and they will dance like they have danced before... all 60 something of them with their cherubs in tow.

It will be a normal Christmas.

Monday, December 18, 2006

Perspective - From Advocacy to Grassroots

Friday. 15th December. Open Air Avenue, Pach Building Area, Tadiwala Road Community, Pune.

Celebration of Life

Hans Billimoria, taking the stage, asking the people of Tadiwala to wake up to HIV/AIDS; Malik and the guys from Sahara Aalhad grooving away to ‘Kya Mujhe Pyar Hai; Mike Marshall, talking in faltering Hindi, about collective responsibility and embracing PLWHA; A beautiful woman draped in a purple sari dancing gracefully to ‘Kajrare Kajrare’ while the crowd cheers on; testimonies of courage and hope.

A truly memorable evening came to an end.

Thoughts played around in my mind as I headed back home.

I remembered when I first met Hans, about three weeks ago, he had told me that ‘If you really want to work, work at the grassroots.’ Now I know what he was talking about.

Volunteering on the ‘Wake Up Pune’ Campaign, I have seen a new facet of India’s fight against HIV/AIDS.

For me, the spotlight has shifted from Roundtable Breakfast Events to PuranPoli Dinners at Laxmi Tai’s home in Tadiwala Vasti; from uninspiring speeches by MPs on Targeted Interventions in the country to heart-wrenching testimonies of HIV + people; from big words of false reassurances by the decision makers to small acts of acceptance and compassion by the common man.

40 lakh AIDS deaths was a mere statistic. Now, the death of even one AIDS patient is a tragedy, like the death of a loved one.

‘Transgender’ was just another ‘High-Risk Group’. Now it stands for people whose lives, filled with aspirations, pain, hope and dreams, are as real as yours and mine.

‘Stigma and Discrimination’ were ‘Key Words’ in any advocacy plan for PLWHA. Now I understand the intensity of their impact on lives of PLWHA. These two are more dangerous than HIV itself, for as I discovered, HIV doesn’t kill. ‘Stigma and Discrimination’ does.

Three weeks ago, HIV/AIDS was just one of the many socio-economic problems/public health challenges faced by India. Now HIV is about ME. It is about YOU. It is about US. And neither the govt. nor the NGOs alone, but every one of us has to do something about it.

HIV is REAL. HIV is HERE. And HIV is NOW.
No more Promises. Let our actions Speak.

-- Himakshi Piplani, Volunteer

Tuesday, December 05, 2006

The Chaos Within - And her eyes stayed shut

I went to see Jyoti yesterday.

With the Wake Up Pune campaign I have not had the chance to speak with her or any of the other clients at Sahara Aalhad Care Home. The last time I saw Jyoti was when they were about to insert a nasal feeding tube about three weeks ago because she was not eating. She refused the tube and despite all our arguments to convince her otherwise she remained adamant. Even when Maya and I tried to speak to her of other things to take her mind of the impending tube she knew...

"Don't try to butter me up. I do not want the tube."

Finally we had to leave because our presence was not helping and even as she clutched our hands in goodbye and I kissed her forehead her eyes said, 'don't let them do this to me.'

They had to. Mike subsequently made a deal with her and in a few days the tube was out and she was eating again, but I could sense the betrayal in her eyes as I walked out of the women's ward the last time...

She was a fighter, the ice cream - mango - started flowing down her throat again, and she ate, ate well to make sure that she would not suffer the ignominy of the tube again, and also what in her mind the tube meant - the beginning of the end.

Last weekend Mikey told me that Jyoti's CD4 count had dropped to 19. I was devastated. This was not good news. This meant she was vulnerable and open to all those opportunistic infections that floated around Sahara in search of a host.

Opportunistic infections remind me of Christ's struggle with the demonised version of Satan in the wilderness. After Satan tempted Christ three times Luke's gospel writes that Satan left Christ for a more 'opportunistic time' - possibly when he was on the cross robbed of purpose...

Point?

The opportunistic infections, especially TB wait and pounce and kill anyone as weak as Jyoti was with a CD4 count of 19.

I left Tadiwala Road around 12.30 yesterday. On the way to Sahara, Ryan, a volunteer from the US, called me up and said he thought that I should really come in and see Jyoti. I said 'on my way.' My mind was trying to figure out where I could buy her a cup of Mango ice cream.

Around one 0'clock I arrived in Wagholi and had to stop off to deal with another extremely pressing matter that involves people that we all love and have admired. What I planned to take an hour took almost three.

I told Mikey that I would be at Sahara by two, and at two forty he called me up -

"Get your arse here now, I am suddenly losing Jyoti."

How? Why? What about the Mango ice cream?

When I turned into the lane five minutes later I saw Mikey and Malik standing outside the gate waiting for me. Somehow I knew that I had just saved ten rupees on a cup of Mango ice cream.

I stopped and inquired with that nod of the head and raised eyebrows that we all inquire with from a distance and they both replied with a shake of the head... it stopped me momentarily in my tracks before I walked on and passed them into Sahara and into the women's ward. The green screen was up around her bed in the corner. I walked around it. And there she was. I pulled back the blanket that covered her and Jyoti's eyes were still partially open.

As I stood there with my hand on her chest and kissed her forehead that one last time, a Sahara care worker came and placed two five rupee on her eyes to weigh them down. It was like the passing of a Greek hero into the afterlife.

She was our hero.

This woman stood up in front of almost three thousand people last year in Tadiwala Road on World AIDS Day - Celebration of Life - and declared that she was HIV+ and asked her community to accept her. She did this knowing that her uncle threatened her with no support if she went through with this... something she did not tell us until after Celebration of Life was over.

This woman stood up in front of the community leaders of Tadiwala Road in January and convicted them with her experiences of stigma and discrimination.

This woman walked with me into colleges around Pune and spoke to students of her struggle.

She was rail thin, and she was probably everything that HIV+ people are supposed to look like... but then she spoke with her crooked smile and she was eloquent.

Jyoti taught me that death was not something to fear. She called it her second death, the physical end; her first death was when her family rejected her after she was known to be HIV+.

It is so easy to romanticise this woman. She let nothing stop her. Nothing. She worked hard. She wanted no charity.

When they brought her body out to wrap in white I helped. I felt empty...

Wake Up Pune is about Jyoti and those like her. This same morning I was at a school session speaking about how HIV+ people can live 'positive' and productive lives, and that India has the highest death rate in the world (400, 000 last year according to UNAIDS) only because people are afraid of HIV; those who stigmatise and those who are stigmatised against.

Ignorance, Fear, Stigma, Discrimination... silence. Our stigma chakra.

She was silent and her eyes stayed shut.

Wake Up Pune, but Jyoti was not about to wake up, and these thoughts were all that kept running through my head...

Fuck... just exacerbated as I write because Ajay the rickshaw driver who drives us regularly to Sahara walked in and asked me how the funeral was... and then he asked me if I spoke with her, I said no I arrived just after she died...

"You should have spoken to her, she wanted to speak with you."

I know. I wanted her to eat Mango ice cream with me. I wanted her to smile her crooked smile. I wanted to hear her berate me for not coming to see her for so long.

My hands were wet with her release as we lifted her shrouded body back on to the table. Dead bodies leak remember. And Ryan and I drove with her to the crematorium.

We took almost two hours to get there with the traffic and the Indian bureaucracy playing their roles and finally laid her on a bed of dried cow dung cakes.

The wailing began. They unfurled that sari that I have now seen unfurled too many times over my clients, my friends, and laid it on top of her. Then they opened her shroud so that the family could have one last look at her... and her eyes stayed shut. The wailing intensified.

The men piled cow dung cakes high around her and began to chant. She was a Buddhist. I grew up next to a Buddhist temple in Sri Lanka. I chanted with them.

'Buddhang Saranang Gachchami'

The flames danced brightly. There was little or no smoke. I stood there with my team in the growing heat of the flames and said thank you to Jyoti. Tears fell. A hand reached out and placed itself on my right shoulder. I don't know whose it was. We stood there and watched her last dance.

And her eyes stayed shut till the end.

Goodbye Jyoti.

You are now a part of me.