Pied Piper of Tadewalla Road

On the eve of Diwali I had organised a children’s party for twenty of our school drop outs at Extentia’s office. The aim was for Extentia volunteers to interact with the kids and give them some fun for Diwali. Really nice idea. In the week the School Drop Outs Project Leader had assured me that he would get me twenty children, an ambulance (that’s the form of transport we use here at DGS! Kind of like the Scooby doo van!) And a driver. I get to DGS on Friday at 4.30. No sign of any kids. Call Hans in a small panic. He comes down. Still no children. I envisage the Extentia staff hovering over paper plates, party games and the Diyas that will be painted, waiting for phantom children to turn up. The party that never was. Five O’colck passes. Still no school drops outs. Kinda looks like they just dropped out of the whole thing.

I can see steam starting to seep out of Hans’ as we wait on the steps of DGS. I can feel my own temper being to bubble. Hans asks the Project Leader what’s going on. He informs us that its Diwali so he didn’t think it was worth bothering to ask anyone. Again I picture the Extentia staff hosting a phantom party. This is an organisation we are trying to build ties with, so not delivering children to a party they had organised would leave us red faced and embarrassed. Project Leader didn’t really seem to give a damn. This is the frustration of internal politics in an NGO. This is a job to some people, rather than a passion. Some people just cannot see the bigger picture. They don’t realise the impact that this could have on what we are trying to achieve organisation wise. Sometimes you are just banging your head (when you wish it was theirs!) against a monolithic unmoving wall. If he couldn’t sort it out, he should have just said. Instead of leaving us seething on a step at 4.45 on a baking Friday afternoon.

The steam came out of Hans ears at this point…. So we became the Pied Pipers of Tadwalla Road. If some people can’t be arsed to get 20 kids to attend a fun party, then we certainly could. The DISHA team as always where there to save the day. Frantic calls where made… ones that an outsider would be intrigued by “ I need you to get me twenty children and I need them twenty minutes ago… chalo”!!

Ranu, one of the saviours, is cooking her children some Diwali treats in her home when we call. Frying pakoras over her stove. Kids playing outside. The fact she drops everything in a minute and brings the kids and her pakoras within ten minutes demonstrates a) her utmost respect for Hans and b) her dedication to DGS. If only everyone could be like her. Mira, another saviour, answers the SOS in jaw dropping fashion. In a panic we beg her to bring her kids and a few others in ten minutes. Like Ranu she is preparing for what is the equivalent of Christmas day… cooking, getting the best clothes ready, making rangoli outside her house. That doesn’t matter. Five minutes letter a long line of children all holding hands slowly drop into the centre. All sent by Mira. There are 42 in total. Yes its Diwali, yes it’s a holiday, but that doesn’t stop the dedicated DISHA staff delivering on our promise to Extentia. And delivering in the form of 42 kids!!!

Now we all have to fit into the Scooby van!! Me and 42 kids age 7-15. Them speaking Marathi, me English! There isn’t room for Hans and Ranu, they assure me they will be along soon! We squeeze in, 44 people in a 10 seater van.

We get to Extentia only thirty minutes late. Its no point trying to hide the fact we have 42 kids when we should have 20… the more the merrier hey? Well 42 is better than a big fat 0.

The party is great… Extentia really know how to give the kids a great time. First games are played, then Diyas (Diwali candles) are painted, then dancing, food, then the piste de resistance – Fireworks! At first the kids are shy, they are not used to this kind of environment. I (as a DGS face), have to show them all the toilet, as they won’t go on their own. Then as the music blares out and the fireworks sparkle the Indian urge to dance quells all shyness. The shoulder wiggling and hand jiggling is a site to behold on a roof full of candles on a starry night. This sense of togetherness and momentary dissolving of all boundaries between those that have and those that have not, is what Diwali is all about. A festival of lightness.

The Chaos Within - Outside with the chappals

I leave for Sri Lanka today to renew my visa.

As I have done so many times before, I leave DISHA with Avinash at the helm. Safe hands.

This journey is not just about a visa. It is about a rediscovery of will. Strength. Laughter and tears. My first steps. They need to be taken again. And again. The eternal return of the first steps. Its the same with DISHA. The Wake Up Pune campaign and Celebration of Life event on the 1st of December will end. Then, the first steps need to be taken of our new beginning. We did this last year. We have to do it again.

New beginnings can be tiring. It would be easy to continue that which is not necessarily old. The beginning too, is not necessarily new, or fresh, just... a reaffirmation of why we are here, and what we hope to acheive.

You can see Mikey do this at Sahara Aalhad. In the couple of weeks almost that he has been here the centre feels him. Not just the Aalhad team and the clients, the very centre, the walls, the floor, the door, the murals. It is a reaffirmation of what Aalhad wills itself towards. It is not about one man. Yet, sometimes one man or woman is required to make it not about one man or woman. Sometimes one man or woman moves us from the I to the WE.

About a week ago at the Aalhad office we were discussing the problems we face as NGOs, both internally and within the larger NGO network.

Subharna came up with a concept for a sign: "Check your ego at the door."

Brilliant! What was the Marathi translation? The literal translation sounded tame. Finally Salim pipes up: "Leave your ego with the slippers." See literal translations do not work. But basically, the Indian culture is to remove footwear befor entering a house of office, and so, the ego stays outside with the chappals!

To reaffirm our passion and commitment and will... and all else it takes for us to do what we do... egos have to stay outside with the chappals. And sometimes... so do we... until we learn. Until we reaffirm. Until we are ready to take those first steps. Again. Fuck. Again.

The Chaos Within - Mask of Stigma

I know that my blog posts are not as regular as they used to be. The Wake Up Pune campaign is taking a lot of time, and of course everything else that DISHA is trying to accomplish. Celebration of Life 2006 is coming around again and the DISHA Cricket Challenge Trophy games begin in early November. This year we have approached a corporate Extentia to support us and we await confirmation with fingers and toes and all else that can be crossed.

Mike Marshal has finally arrived at Sahara Aalhad with the intention of upgrading it to as near as he can get to hospital standards with the limited budget he has. Mike brings with him a wealth of experience and for someone like me who is green in this field Mikey being here is huge! He echoes everything we want to accomplish in this city, and he brings with him the authority of having worked all over India from Naga Land to Hyderabad. I have much to learn from this man. Much.

On Friday last Mikey arrived just as the inaugural DISHA party was winding down on the terrace. This party was for the 'DISHA family' as Avinash calls us all. Clients and team and everyone else included. We had so much fun. We danced and danced and then danced some more. The orchestra from the community that we paid Rs.800 for consisted of a drum, a couple of singers and a tambourine. It was fantastic. This was all we needed. Avinash and Meera and Laxmi joined in with guest vocals and we were off! Everyone was dressed in his or her best. And anyone who wants a window into life after HIV, come join us on the second Friday of every month on the Deep Griha terrace at Tadiwala Road.

We keep saying during our education and awareness sessions that HIV is not an end to life. And we say it with the conviction that our HIV+ clients have given us. The conviction that our HIV+ team members have given us.

I was overcome that night. Again. Why has HIV become what it is? What have we done to HIV that makes people reject daughters and stone neighbours? Why are we so afraid of HIV+ people?

Multiple answers. I know. Multiple answers. Yet... none of these multiple answers answer the questions.

When we say stigma kills we mean it. We've seen it. We've touched it. And if we are not careful it will bite us too. It will infect us.

Someone I have worked with for almost two years suddenly turned around and told me that she is afraid of the stigma she 'might' face from my team if she tests herself for HIV. Her fear was very real to her. And although I do not and cannot believe that anyone on my team will stigmatize her, the fear in her eyes forced me to confront this very fact. And I could not say for sure that yes, no one on my team will reject you. This realization, if you like... it sapped me of all my strength. We have to be so careful, even if we are in this field. Even if we claim to be the adversaries of stigma and discrimination. It is insidious. And my friend who worked me for two years fears it. It maybe a creation within her, this fear, yet, it is there, and it stems from her intimate knowledge of how we work.

It is human. The fear of stigma... and the stigma. When I think back to Saraswathi and all she went through, when I think of Anita, Ashok, Ratnadeep, Usha, Renu, Prakash, all the clients that both DISHA and Sahara have lost, our human condition is. It just is. Maya sobbed for the first time on Thursday. She sobbed uncontrollably. The matter was trivial. Inconsequential. It brought forth a flood. As I held her... her very real strength seemed a facade. My strength is a facade too. It is human. Person comes from persona... mask. And the mask of stigma is easily worn.

We just might not know that we are wearing it.

The Chaos Within - A City is its people

At the last Wake Up Pune meeting we discussed what our USP is...

Issues of HIV transmission, stigma and discrimination, access to HIV related services, support for people living with HIV - all these are included in our the campaign, but what makes our campaign different?

Issues of transmission and stigma and discrimination have been dealt with before. Access to quality testing and support services is high on the agenda of many organisations and campaigns have been conducted in the city. So what is it, is it just the scale of what this campaign is trying to achieve?

As Rajesh Joshi - a film maker working with us on the campaign -said when we spoke about the possible lack of donor support, we should still go ahead nonetheless, and ensure that we do not dilute Wake Up Pune to Wake Up Bhawanipeth! I.e. Reduce the campaign to just a part of this large city.

So if we are trying to wake Pune up, is this enough, or do we have another USP that is linked?

Possible answers:

1) It is the first time that HIV agencies in the city have attempted to 'work together' for a Pune wide campaign.

2) It is the first time that a Pune wide campaign has been attempted.

3) Simply, we are trying to wake Pune up to the issue of HIV that is largely ignored.

The first possibility focuses on the cooperation of agencies.

The second focuses on an inaugural event... yes, we will need more than just one Wake up Pune campaign.

The third is by far the closest... but then, how do we make Pune aware that this is about them? It is not about the scale of the campaign, it is not about the myriad of agencies that run the campaign, but rather, that it is about the city! Its people!

That's where we discussed numbers. And the discussion focused on the fascinating reactions we as human beings have to numbers...

Let's be honest, we are trying to 'sell' Pune the idea that HIV is an issue in our city, and that it needs to be addressed rather than be ignored, and numbers can help us achieve this.

So how many are infected in the city?

As this blog has reported in the past, the NACO stat from 2004 is 1.8%... this is double the national average, this is almost double the epidemic status mark set by WHO which is 1% of any population.

This makes it approximately 100,000 people depending on which census figure we follow.

These numbers are more than just 'significant' for us in the field…

So what do we do?

Do we say 1.8%... would this reassure you or scare you? (Thanks Paul)

Do we say 100,000 people... can you get your head around 100,000 people?

India has a prevalence rate of 0.9%. We are technically a low prevalence country! We have not reached epidemic status!

India also has an estimated 5.7 Million people living with HIV, the highest in the world according to the UNAIDS June 2006 report.

Another number that is interesting is that only as little as 8-10% are said to know their status. This leaves a mammoth 90% ignorant of their status and how to protect themselves and those around them.

We can play the numbers game all day and finally would we have made a difference? Does it depend on how we play it? Should we play it at all?

If we don't, i.e. use a number from a credible source - what is a credible source? NACO contests the UNAIDS figures - can we engage with Pune?

The bottom line is that Pune needs to know the extent of HIV in the city.

But how do we do this without diluting the issue?

We need help, so if anyone reading this blog has any ideas about how to use the number let us know.

But more than the number, I think the focus on the people of Pune is fantastic, and if our campaign is run right, then... Pune will begin the change we hope for.

Our tag line for Wake Up Pune is "You can make a difference."

It's simple really:

You can make a difference from protecting yourself from contracting HIV... this may involve behavioral changes, it may not.

You can make a difference by treating HIV+ people with the dignity they deserve, by not judging them, by supporting them, if you are in a position to support them... this may involve a change in attitude, it may not.

Obviously the campaign will have posters, hoardings, leaflets, street plays, multiple sessions across the city with all sectors from corporate organizations to slums, the Race Against AIDS marathon and much more to reinforce our key messages... but at then end of it all, when we do the post campaign evaluation - the pre and post campaign evaluations deserve a blog of their own... mammoth task! - we want to know whether we have actually connected with the city... whether the city is actually willing to wake up and make a difference.

A city is its people.