The Chaos Within - Palliative Care

I just went downstairs to meet Saraswathi. Remember Nagesh? His wife.

She didn't recognise me. She sat on the chair staring into space. Her mother spoke for her.

I asked, "How are you?"

The mother replied, "She is fine."

Me: "Are you feeling ok?"

Mother: "She has fever."

I felt her forehead. She was running a slight temperature.

Me: "A little fever, yes."

Mother: "Yes, a little fever."

A week ago Lata informed me that Saraswathi's mum had taken her to Dapodi, about an hour from Pune, despite Lata's advice that Saraswathi required special care that we believe Sahara Care Home could provide.

Yesterday Maya reported that Saraswathi's condition had deteriorated and that her mother was refusing to bring her back to Tadiwala Road for us to assess her condition. All we had to go on was what Saraswathi's daughter, who had remained behind in the community, was able to tell us.

This morning I sent Maya and Avinash to Dapodi to persuade Saraswathi's mum to let her come back to us, so that we could send her to Sahara. Avinash is good at being persuasive. By late afternoon they were at the centre en route to Wagholi. I phoned up Errol and informed him that Saraswathi is in a very poor state and required his fullest attention.

After I put the phone down, I thought of the other clients at Sahara. Clients I had met on Tuesday when I took Mahrukh Bharucha - she directs a play I'm rehearsing for at the moment - to visit Sahara. She met Errol at Easter Lunch at my house and was taken with his passion and commitment that he wears so prominently on his multicoloured sleeve.

On that visit the impossible task that Errol, Malik, Salim & Co make possible was brought home to me once again. As I sat with a man who was ravaged by TB, trying to coax him to eat, I thought 'Fuck, how does Errol do this every day?!'

We spent just under an hour at Sahara, and by the end of it, Marukh had taken a peek into life in Pune as she had never seen before: HIV+ people left to die, HIV+ people struggling to survive, HIV+ people smiling their welcomes, HIV+ people reaching out with the hand that is not paralysed to shake our own, HIV+ people who help others recover, HIV+ people sitting down to sing songs of praise to God.

I was approached by a couple of board members of Deep Griha, Dr. Onawale and Dr. Chakranarayan to explore the option of opening up a DISHA Care Home. Although I wasn't in favour of the idea, I did do the baseline survey of care facilities available to People Living With HIV/AIDS in the city of Pune.

49 beds.

16 at Asha Kiran, run by the Roman Catholic Diocese.
7 at Naidu Hospital (Govt. Run).
26 at Sahara.

That's it.

1.8% of Pune's , 5,000,000 (approx) population is supposedly HIV+ according to NACO. That's at least 90, 000 people. The answer is 49 beds. This of course does not cover the facilities available at Sassoon General. There are beds and mats for those who have no where else to go, but there is little or no attention paid to the patient, and if you are HIV+ ... then brace yourself for the very strong possibility of being stigmatised against and treated like a... like a...

Lepers, and outcastes are treated better today than someone who is HIV+.

Private hospitals also have services available for PLWHA, but none of the hospitals focus on the compassion that PLWHA require, like Asha Kiran aspires to, and Sahara does.

Arguably, if you had the money, dying in a private hospital would be preferable to dying at Sahara. At a hospital you receive better pain management. What DISHA is trying to do is get funding for Sahara so that they can provide better pain management too, and together with their compassion for the client, I believe Sahara can provide a service that rivals the best in palliative care for PLWHA.

We will pay for Saraswathi so that she receives the best possible care that Sahara can provide, but we neither have the budget nor the hope of funding currently to help Errol and his team alleviate the pain of Sahara's other clients.

To this end, I am proposing to the governing board that Deep Griha works together with Sahara, rather than go down the road of providing palliative care ourselves.

This will also break the mould in the HIV/AIDS sector where organisations are working in isolation, protective of their funding and their HIV+ clients - the reason for their funding. The focus on the beneficiary is often lost, and sadly some organisations get on the HIV/AIDS bandwagon in order to provide employment for their staff.

The reason we operate only in Tadiwala Road is because Pathway (run by Project Concern International - PCI) works in both Ramtekadi and Bibwewadi, the other two slums that Deep Griha has served since 1975 and 1984 respectively. Deep Griha refers all HIV+ beneficiaries to Pathway in these two communities.

The focus must be the beneficiary! In this case, the person living with HIV/AIDS.

The sooner we wake up to working together, the sooner an array of services - well administered and implemented - will be available for PLWHA in the city of Pune.

Have I said too much?

SCOTTISH DAY


On the 31 March a Scottish day was held at Tadiwala Road. It was a day designed to give a little insight into the traditions, pride and fun that engulfs the great country of Scotland.

The day included many different events but one of the big events was the Caily. Some of the most popular of the Scottish Country Dances were demonstrated to the awe struck children. This included a fantastic demonstration of “The Dashing White Sergeant” at the very start of the day. The children even gave their own attempts at some of the dances. “Strip The Willow” was taught with limited success and a lot of laughs, while “The Gay Gordons” was quickly abandoned and instead people just kept spinning round in circles to the catchy music that filled the air with a buzz of excitement.

Now Scotland holds a friendly monster called “Nessie, The Loch Ness Monster”. ‘Nessie in a Nutshell’ gave the dramatic history of the great beast from her encounter with missionaries and monks right down to modern day hunts for Nessie. Then the children followed their new found knowledge up with a game called “Pin The Tail On The Nessie”. A beautifully painted poster of Scotland’s long, green resident with its tail missing had been carefully made the previous day. The children were then given the tail, blindfolded, spun around 5 times, and then tried to attach the tail to Nessie. It was harder than it sounds and her tail ended up all over the place. Despite the dizziness and level of difficulty, the children lined up to try and give Nessie her tail back.

Nicola Yule demonstrated “The Highland Fling” to us with impressive results. As the rest of us hummed the tune (as we were unable to get it on CD) and the children clapped their hands, she bravely danced a solo of the dance to the cheering crowd. It was an impressive dance done expertly and was a joy to watch.

Then it was time for food. The previous day the kitchen had been invaded by volunteers and there were chocolate goodies to be had. First up there were chocolate crispies with Mars Bars in them. They were good! Then chocolate truffles, which went down a real treat with everyone. There was nothing left except the washing up at the end of the day. The fudge that had also been made for the day refused to set, even though it was left in the fridge overnight. It didn’t set for days afterwards ether!

Last thing on the list was a singing of “Flower Of Scotland”, Scotland’s National Anthem. It was played on the chanter and the first verse was sung to the children. The words themselves probably weren’t understood but we felt it important that they heard some of the great Anthem.

The day was finished off with some group photos of volunteers and children together with Nessie smiling from a poster in the background.

The events were repeated, once in the morning and again in the afternoon, and both went well. Lunch was a more Scottish type meal than Indian, though rice was still there there were vegetables through it although there were no chapattis or dale in sight.

In conclusion Scottish Day went well. Flags, posters and tartan hats were floating about and everyone had a great time. Most of the staff at Deep Griha put their heads round the door to have a look at what was going on and have a little dance themselves. The day was a fantastic success! Such a success in fact that we decided to do it again, and 2 more Scottish days are happening, one at Ramtekadi and the other at Epiphany school. Should be good.

Well done to everyone who helped to make Tadiwala Road’s Scottish Day the brilliant event that it was. It really couldn’t have happened without you.


David Lyon

Pre-Hobby Week

For the past 2 days I have been sitting staring at a computer trying to find things to do with the kids for hobby week. I've searched through art and craft pages, party games and songs pages. So far, to be honest, I haven't come up with much - what do you do with 100+ kids with ages ranging from 6 - 14?? Things that seem really good and fun at first become the worst idea ever overnight or things that are great for the younger kids will bore the older ones to tears but what is good for the older kids is much too difficult for the younger ones. Does that even make sense?? I've thought of doing some drama or songs or games with them but there are so many children...not to worry though...I'm sure between the 6 volunteers we'll be able to think up something, if nothing else it will be interesting to see how it all works out.

I'm now sitting staring at the computer trying to think of what else to put on here...my concentration levels seem to have hit the floor in the heat of the day and just think, its getting hotter - my brain is going to frazzle away to nothing I think.

Anyway, getting back on track...

The next few days should be a learning curve - I've no doubt at some point we'll have to do a little improv. We're taking the hobby class from 10-1 from tomorrow all through next week - the idea of having a mini scottish day is sounding quite appealing - teach them some scottish dancing which will no doubt just turn into a lot of twirling and jumping round in circles. Undoubtedly it'll all be good fun, not too chaotic with just a hint of madness...

Esther

The Chaos Within - Big Bang or Adam & Eve

Where did HIV come from?

Last week was DISHA's training week.

The question of HIV's origin had never really occurred to the team, until Pramila, my Nutrition Supervisor, asked me if its true that HIV was an infection that came to us from a Chimpanzee.

Before I begin, I would like to direct readers of this blog to http://www.avert.org/origins.htm to read about the origins of HIV/AIDS… and although I have written about some of this stuff before, what follows are some thoughts about theories (hard cold facts) that seem to surface again and again in our work.

At the Limuru Conference in January, Rev. Dr. P Mohan Larbeer from the Tamil Nadu Theological Seminary, Madurai presented a paper that included the hypotheses that 1) the HIV virus was created by the CIA - a sort of biological weapon- that primarily targeted people of African origin, or 'black' people, and of course, homosexuals; and 2) That Western Scientists working for Pharmaceutical companies not only created the virus, but also have the answer... it wasn't very clear whether that answer was a cure, or a vaccination, but they are sitting on it, because there is Zillions to be made through the manufacturing of ART/ARVs!

Being a brat in the HIV/AIDS field, this was the first time I had heard these theories, and I was aghast! My first reaction was that it was bullshit! I stood up and thanked Mohan for his 'provocative' presentation and commented that if what he was saying even had a semblance of truth, then all that we at the grassroots do to fight HIV/AIDS is futile... the conspiracy or onspiracies will never be overcome!

Mohan's presentation - there are books on these theories, and they not written by your average conspiracy theorists that believe Will Smith and Tommy Lee Jones went undercover with the real MIB as part of 'the method' - may be conjecture at best, but it did make us think about the industry that is HIV/AIDS.

But, if HIV was created by white Western scientists in a great underground labyrinth of laboratories in some obscure little town in middle America, like Nashville Illinois, where the American Government has teams of scientists working on devious-anyone-who-is-not-white-and-Christian-and-straight-and-married-decimating-weapons of mass destruction, then they fucked up. Because as we say on the DISHA project HIV/AIDS does not discriminate... white, black, yellow, green, red, it does not care what colour you are! Christian, Muslim, Hindu, Buddhist, Jedi, it cares not about your creed. Gay, Straight, Transgender... It will infect you if it can... if you allow it to.

Another theory I heard quite recently was that homosexuals created it. Repeated anal sex somehow gave birth to the virus.

This appears to be a popular hyopothesis in Pune.

Added onto this is that HIV is God's post-modern curse on all those homosexuals and the promiscuous, regardless of sexual preference. In the beginning, well, circa 4000 BC, he dealt with them by raining down sulphur; on Sodom and Gomorrah for instance (heavy rains for 40 days and 40 nights, and waiting for the sewers to back up - according to Bill Cosby - hadn't really worked back in Noah’s day), and in the 70's (first case of HIV was probably in 1959) he decided HIV was the way to go. Why the 70's? Flower power and free sex was at its zenith. Dates help corroborate the facts! If the faithful, like Pastor Patricia Sawo contracted it, then that's just part of the collateral damage that this transcendent all powerful being is so accepting of.

The scientists - those who apparently do not work for the American Government’s WMD programme - search for an answer, and they should. Understanding HIV’s origin will help us fight it. And the AVERT site sheds light on how far they have got.

But for me, at the grassroots, the frontlines of the battle, debating about the origin of HIV/AIDS with those who do not want to think past ‘where did it come from?’ is much like debating the origin of humanity, the world and the universe, as we know it.

Did God conjure up the universe, and choose the ‘third rock from the sun’ to create a species in his own image, and endow man with free will, and give him dominion over (some read ‘responsibility for’) all creation, or was there a unimaginatively named ‘Big Bang’ that determined our beginning?

I really don’t care… even as a Christian I didn’t. Be it that Adam came from clay, and Eve from one of his stolen ribs, or be it that humanity began its journey as an amoeba, we are here now, and we have to live! Life is a gift. Be it from God, be it from my mum and dad. Also, all this horror of existence vs. the horror of non-being means little to me. We do exist. We just have to make sure we live.

HIV is here. It may have been through zoonosis, and if it was, I do hope they find a way to beat it… but concerns with HIV’s origin must in no way take away from the battle ahead of us; the people who are HIV+ , their families, all of whom need our support and love; the STIGMA that is so insidious and preys upon so many of us.

The blame game, the pointing of accusing fingers, the looks of disgust – all these often take precedence over actually preventing the spread of infection, and caring for those who are HIV+. I have sat with seemingly intelligent and compassionate people who are so caught up with the origin, or how someone contracted it, that they are ironically less concerned with the continuous rate of infection and the person who is HIV+.

We have also been told, more than once, the last time was yesterday, that we're merely prolonging life, and increasing the chances of infection, i.e., an HIV+ person is necessarily an agent of infection. Just let them die.

Again, on the project we drive home that HIV is not end to life. HIV+ people do not have to merely suffer the rest of their existence. They can live!

... ...

So, go, read about the possible origins of HIV/AIDS, satisfy your curiosity, and then come help us fight this battle. We cannot do it alone. We need you to be HIV Positive.

A walk down Tadiwala Road

I originally posted the following blog elsewhere... Hans has requested that I put it up on this site too, since it's about the community where Deep Griha Society operates.

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It's a sunny late February morning, around 9.30am. Although summer doesn't begin officially until March, winter is definitely over and it's going to be a hot day. I leave my first-floor flat, and take the stairs down. The panoramic views from the roof eight storeys up are stunning, especially at night.

I take a left out of the front gates, giving a brief nod to the uniformed security guard. There's a team of seven, and the gate is manned 24 hours a day. Sometimes I get back late at night and tiptoe past the slumbering watchman as he lies by a small fire, trying to keep warm.

Immediately outside I encounter two small girls balancing heavy water jars on their heads. Dressed in rags but sporting beautiful smiles, they've just fetched water from the public tap down the road, and are returning to their homes on an otherwise barren patch of land adjoining the small car park.

The children of construction workers - the women work as well as the men - hired to build the apartment blocks, they live onsite in temporary hutments fashioned from corrugated iron sheets and tarpaulin. My building was finished a couple of years back, and the next block is almost complete. Perhaps soon they'll start on the final building. After the work is finished, say in a year or two, the land they currently occupy will probably be turned into a couple of parking spaces and they'll have to move on. Yet they're the lucky ones. A few years of steady employment and a place to stay - although it's squalid, it's better than the street.

As it happens, their hutments are on the other side of a wall surrounding the residents' swimming pool and clubhouse. I wonder what they make of it all. We don't share much in common, although as a mere tenant I don't get to use these facilities either. It's best not to consider that my monthly rent alone is probably equivalent to half-a-year's salary for one of the male labourers. The women usually get paid even less.
A little to the right outside the gates sits a large skip, piled high with rubbish. In the mornings, there'll usually a rag picker atop this pile, searching for some small treasure - a plastic bottle, some newspapers, old clothes perhaps - that they can sell on for a couple of rupees.

As I walk down the lane that leads to Tadiwala Road proper, I overtake two teenage boys, strutting in the fashion of teenagers the world over, and dressed in the typical fashion of urban Indian lads: tight jeans, mildly flared and a little high-waisted; slim-fit wide-lapelled shirts; oiled hair. Just here there's an autorickshaw rank - very handy - and on my left I pass a tiny one-room tailor shop. On my right there a couple of general stores, where you stand outside and ask the shopkeeper for whatever supplies you're after. All the goods are arranged on shelves or hung from hooks - an assistant will clamber up a ladder or hop on a chair to fetch down your order. A few more small shops along this lane include a doctor's surgery, a pharmacist and a laundry. Drop your clothes off here and a couple of days later they'll be returned as good as new.

Turning on to Tadiwala Road, things are lively. It's not a wide road at this point - you won't see many cars - but there's always the odd rickshaw and no shortage of bicycles, motorbikes and scooters. There's a vibrant, colourful mix of pedestrians, stalls and roadside hawkers. Fancy a tattoo? A bootleg Bollywood VCD? A poster of Shah Rukh Khan? No problem.

If I turned left, I'd be walking towards the centre of the slum. Tadiwala Road is little more than a kilometre in length, yet more than 30,000 people live in the slum area. When you see the cramped, narrow lanes and packed-together shanty housing you can see just how this is possible. The road here, petering out into a rough lane, terminates up by the river. When the river burst its banks last July due to the excessive monsoon rains, many families were displaced and a number of hutments were destroyed or washed away. For several days, everyone here was knee-deep in filthy water.

Today, as on most days, I'll take a right turn instead. On the corner there's a small tapri stall selling tea, samosas, wada pav and onion bhajis. Tasty if not necessarily healthy, there's usually something frying away in a deep dish of oil. Next door there's a watch stall; opposite, another grocery shop. A couple of guys have parked up their handcarts and are selling fresh fruit and vegetables. Some women, sitting on the ground, are selling today's newspapers. I get my copy of the Indian Express home delivered, so I walk on.

After just another twenty seconds or so, dodging scooters, running children and some mangy-looking dogs, I come up to Deep Griha Society's Family Welfare Centre, facing a small flour mill operation, where the sound (or silence) of the threshing machine gives a useful indication of whether the electricity supply is functioning or not.

Past the FWC, there are a couple more snack stalls and a barbershop. Opposite is a 'lottery centre' for those who like to gamble. Conveniently for those concerned, there's a dingy looking place next door where some of the local men - and it is only men - like to enjoy some illicit liquor. Today there's a man slumped outside. His trousers are open, his shirt is riding up and he's passed out by the none-too-clean gutter.

I continue over the junction with Dhole Patil Road. From here, Tadiwala Road is a little wider - suitable for cars - and is surfaced with tarmac. On the right hand side are a several residential buildings that provide housing for the families of Indian Railways employees. Squat blocks of three storeys, they remind me a little of the ex-council flat I used to share in Balham. They are not luxurious. The buildings are arranged around an open space usually occupied with children playing street cricket.

Passing by a few months ago, I saw a crowd gathered outside, watching the demolition of a couple of unauthorised constructions that had utilised the exterior wall of one of the railway buildings as a convenient starting point. Within minutes, a JCB had pulled down the flimsy structures and loaded the rubble into a waiting dustcart. DGS lost a one-room Balwadi (pre-school) during this operation. The area is now walled off - I don't know what happened to the previous occupants. Slum dwellers are always wary about the threat of demolitions; when politicians promise a crackdown on illegal constructions, slums are always first in the firing line. Yet the wealthy homeowners and businessmen who have added illegal extra floors and balconies to their buildings usually sleep soundly - they'll probably be allowed to 'regularise' for a small fee.

Continuing down the road, things start to move upmarket. Mixed in with the cheap-and-cheerful restaurants along here, there's a fancy-looking business hotel, a British Airways office and a Chevrolet dealership. Just past the railway housing, Tata Consultancy Services has a shiny new building. Next is the National Institute of Naturopathy, which offers a variety of ayurvedic treatments along with beginner, intermediate and advanced yoga classes. I lasted about a week.

Now I'm almost at the bottom of Tadiwala Road. On the right hand side there's a modern church building - Our Lady of Perpetual Help. On the left, there's Sohrab Hall, a kind of office block-cum-shopping centre that houses several boutiques, travel agents and life insurers, a Pizza Express restaurant, a high-end gym, and a US visa centre. Thirty or forty homeless people live on the pavement just opposite. At the traffic lights, children beg at the lights. Women holding newborn babies breathe in horrendous pollution all day as they weave in and out of traffic asking for a few rupees.

So there you have it - a microcosm of urban India itself. The rich living side by side with the poor. Opulence and luxury contrasted to abject poverty. Be it the homeless people by Sohrab Hall, or the labourers in hutments next to the Kumar Pinnacle swimming pool, this is India.

A few years ago, someone coined the term 'India Shining' to describe India's promised economic miracle. President Bush has just been in New Delhi to discuss free trade so that India's burgeoning middle-class - estimated at 300 million people - can spend their disposable income on American goods and services.
But the fruits of the growing economy are not available to all. Is India really shining for the slum residents of Pune? Are the ever-expanding slums in Mumbai and Delhi a healthy sign of increasing urban employment or a stark reflection of life in rural areas? Are farmer suicides, gender-based selective abortions, communal riots and large-scale political corruption all healthy indicators of the state of the nation?

In India, 45 per cent of all children aged under five are malnourished. But in the cities at least, you can always go for a pizza.

Back at DeepGriha

After spending almost 6 weeks in Bidar, it was a welcome change to come back to Deep Griha. There wasn't much for me to do in Bidar so when the DISHA group came and I spent some time with them and they laughed all the time. Hopefully I'll get to spend some more time with them now I'm at Deep Griha again - learn more about the work that they do.

Although I've said it's a welcome change to be back here it's a big change. The children here are so full of life whereas is Bidar I have been used to quieter children. The kids here laugh so much and are always getting up to something - one thing's for sure - i'll never be bored for too long.

Esther Kerr

Scotland Day

As a leaving present for our two English volunteers Chloe and Faz we decided to organise a Scotland Day to teach them some Ceilidh dancing. Once the light finally came on we managed to get all the children up and dancing to our Scottish music. Not quite the proper dancing but lots of twirling with tons of energy. After a game of pin the tail on Nessie we handed out truffles and crispy cakes (the tablet we had planned hadn't set)which went down a storm.
The story of Nessie the Loch Ness Monster was recreated by David, and although the kids mabye didn't understand every word the sound effects were very popular.

Nicola performed some highland dancing for us while we all dummed along to Scotland the brave. We finished the morning by singing flower of Scotland and handing out paper thistles which we the Disha clients had made. After a Scottish lunch of Rice with veg and dahl throught it rather than beside, we ran the whole thing again in the afternoon.