DISHA Community Awareness Session, a volunteers perspective

Today I was lucky enough to accompany some of the DISHA ladies into the community to conduct an awareness session about HIV in a client’s home. The client, a woman named Maharinda, is HIV+, along with her husband and two children. It was explained to me that she was first diagnosed she was very unhappy, in denial about her condition and unwilling to speak to anybody from DISHA who tried to reach out to her. I found this description difficult to connect to the smiling woman who I met today, who was so enthusiastic about the work that DISHA do that she had invited her female friends and neighbours into her home to participate in the awareness session. We all squeezed into Maharinda’s house, some of us sat on the bed and some on the floor, and listened intently as the DISHA ladies explained the causes of HIV and how you can protect yourself from the disease. It was easy to see how interested everybody was; their attention remained focused on the speakers until the end.

For me, the afternoon highlighted what makes DISHA so effective. They are proactive about awareness, not inviting people to come to them but going out into the community, into people’s homes, to spread their message. As members of the community themselves, the DISHA staff are in a perfect position to build relationships of trust – something that was evident today when they were invited into somebody’s home to talk about what is still a very taboo subject.

Kate Evans, volunteer, Deep Griha Society

Ladies in red...

I was kindly asked to go along with the DISHA team to a Truckers event today where their aim is to spread awareness about HIV/AIDS within the trucker community. When we reached the destination, I was quite apprehensive about getting out of the van, particularly as it was quite a male dominated environment. However my fears quickly disappeared when the DISHA team keenly jumped out and started setting up the sound system and getting their leaflets together. Within minutes the team were surrounding by a small group of men who were intrigued by the ladies in red. Then they started. They got into a circle and starting singing passionately about HIV/AIDS and the importance of wearing a condom. More and more men were interested in what was happening and going on. The ladies then went onto performing their street play.

The audience listened intensely to the team. Once the performance was over, Santosh, a member of the DISHA team gave a speech about the importance of being safe followed by a condom demonstration. I was amazed to see men listening so carefully to what he was saying. They even went as far as to hold condoms and participate. Santosh’s great manner and public speaking skills really shone as men began to ask questions about HIV and wanted to learn more. Sahara, another NGO, were providing further information about HIV and had organised testing which received a very positive response.

Taking the time to talk to some of the staff from Sahara and DISHA after the event was insightful and getting their perspective on HIV/AIDS was eye opening. The work that they do is selfless and stimulating. The audience which they perform to are fascinated and inquisitive. No wonder the testing result have gone up since DISHA started. Its hard not to feel moved by their work and brevity.

- Roshni Mehta, volunteer, Deep Griha Society

The Chaos Within - 'Just Maybe' and 'Why Care?'

On the 19th of August begins the Asia Pacific conference on HIV and AIDS in Colombo.

Wake Up Pune will be represented by a poster presentation: 'Can grassroots NGOs collaborate on a citywide awareness campaign? Challenges of Wake Up Pune, India.'

The Wake Up Pune campaign has had moderate success. It is difficult to gauge the success only by numbers - although the number of people reached is important - and the baseline survey conducted last December/January will allow for us to sit back and plan how we move ahead.

Why has it taken so long for us to analyse this data?

We have not been able to identify the manpower required to enter and collate the data. This may sound lame. And it is. The concerns of the day often lead to simple procedures being sidelined or pushed back, and the dependence on volunteers (local and international) to sit in front of a computer and enter data (mind numbing) is not ideal.

Its even boring to write about. Already we are challenged. Priorities.

Campaigns, rallies, sessions in corporates and schools, rock shows, these events excite us and bring out our creativity.

And in a resource limited setting like ours we struggle to ensure that a simple procedure like entering data is completed. The analysis is the interesting part... this will challenge us and drive us and push us towards other forms of creativity as we come together and plan and implement programmes and activities.

Baseline data helps though... What is the situation on the ground? How much do people know? Do they know how to protect themselves? What are their attitudes towards people living with HIV?

Basic, very basic, and all else is assumption, arguably even the data will lead to more assumptions because the representative sample is well under 10,000.

Why such a small sample for such a large campaign?

Lack of resources, manpower, interviewers... interest.

HIV is so highly publicised, even by us, and sensationalised, that for many its just another issue: poverty, corruption, child sexual abuse, cancer... why care so much about HIV? Its here, it now appears endemic amongst certain people, so fingers are pointed, heads will shake, tongues will be clicked in sadness (often genuine), stigma will continue and the fear of discrimination will lead more people (even if its not the certain people everyone associates HIV with) into the shadows of denial, carelessness, and stifled suffering.

Why care?

This is our greatest challenge.

Why care?

The 'shoulds' and 'oughts' and 'musts' have fallen of deaf hairy ears for decades. What will change with HIV? Its just another issue for activists to bang on about, bleeding hearts to cry about, NGO workers to scrape a living about, philanthropists to feel good about, corrupt officials to make money about, scientists to do research about... and people living with HIV to struggle with. Every day for the rest of their (apparently shortened) lives.

Defeatist? Yes, we feel defeated, sure.

• When a healthy client commits suicide, we feel defeated.
• When corruption rears its ugly head, and funds line pockets and wallets of people like us in the field, we feel defeated.
• When a young wife pleads with us to save her husband, but we know he cannot be saved, we feel defeated.

At least, I do. For that moment. The moments recently have been many.

But, fuck it. There is no retreat. And while we can't force people to care, we are surrounded by people who do. Naive, simple, idiotic caring people, because at the end of the day that is what we are called. The cynicism we use to protect ourselves, the anger, the sarcasm, the gentleness, the laughter, the dancing, the beers, the singing, the music, the table tennis, the arguments, the madness... we all have our ways, helps us.

And maybe, just maybe, if the caring around has infected us and sustained us, and those with us, then just maybe, it will infect those people who ask the question: why care?

It is this 'just maybe' that makes us get up every morning. Its not really hope, its just... just maybe. In a field that is as complex as HIV and AIDS in India, with social, cultural, economic, religious, medical, political, environmental (yes, you read correctly)... with every facet of our lives affected, the 'just maybe' is crucial. It is as crucial to our existence as the question 'why care' is to those who ask it, and use it, understandably, to live their lives in peace, with a conscience that does not then question back.

There is nothing special about what we do, and it is important to remember this. There is also nothing that is not special about those who ask 'why care?'

If you don't believe me, watch CNN.

A Number That Matters...

5.7 Million, 3 Million, 90, 28, 1…

Which of these numbers is the most shocking?

They are all numbers that are very significant to us.
5.7 Million is the 2006 estimate by UNAIDS regarding the suspected number of current HIV cases in India.
3 Million is a revised estimate by a different organization released to great publicity in the last month or so for India.
90 was the number of clients we have in our Tadiwala Rd. DISHA program; “was”, because on Tuesday it fell to 89.
28 is the number of clients we have in our Ramtekadi DISHA program.
1 is the number of DISHA clients who died on Tuesday.
I would have a hard time believing that his family cared at all for any of the other numbers.

Numbers are sexy and trendy, they rise and they fall, they changed hourly, daily, and yearly. Numbers get funding. They don’t properly tell the story of an epidemic however. If an epidemic is defined by numbers, or embodied by photographs, it is experienced only first hand. You don’t experience an epidemic reading a newspaper article or seeing a photograph. In fact, despite being in India for a year and involved in DISHA for nearly half that time, I can’t really say that I ever felt the individual and personal impact of an epidemic until last Tuesday. I’d been to Sahara and seen clients die there. But at Sahara a client is generally surrounded only by caring staff members and other ailing clients, not their families, not in a domestic setting, at the end of a lane in Tadiwala Rd.

Whether or not all the grief witnessed at the post-mortem ceremony on Tuesday was real or simply dictated by custom; it aroused the senses of the eyes, ears, and nose and caused prickles on the skin. Family members pounded the bed and sometimes the body itself, wailing about their grief at losing a husband, a brother, a son, or a friend. Some held his head in their hands, others drew away and asked our care-workers why they had not wrapped the body in plastic, or covered the mouth, lest the virus escape and infect all those present in the light, misty, monsoonal rain that scarcely dampened those assembled to pay their respects(?).

To those that lose a mother, daughter, brother, or uncle to this epidemic, I’m sure that the numbers above 1 do not matter. To the care workers here, it seems also that one is the number that truly matters. Each client gets the respect and care that they would want themselves. This is articulated particularly fluently by our HIV positive care-workers who take this thought quite literally. This total care towards single clients is also restoring in them a sense of dignity and social existence that i was reported in a newspaper last year that India leads the world in AIDS deaths is not a disputed number.

We try to say that HIV is a virus you can live with, and not one that you need to die from, yet here, in India, is that true?

How do you die from HIV? Do you literally wither away in the most painful way imaginable due to wasting disease, do you die from dehydration due to a long bought of bloody diahhrea, do you kill yourself, does society kill you?

When you wait until it is too late to seek help for HIV because you are worried of the stigma of your family and greater society do your AIDS related infections kill you or did society?

Care-workers don’t think twice of working with HIV positive clients, they know the facts related to transmission and they know the importance of what they do. Yet, despite this knowledge they do put themselves at slightly greater risk of infection by being around potentially infected blood. They do this to prolong their clients lives. What happens when the client no longer wants to live?

On Tuesday I carried a client in and out of several clients from a rickshaw to a bed and transferred him between vehicles. He couldn’t speak to say how badly everything hurt, but when a 30 year old man weighs less than a sack of flour, you know it is bad. His eyes rolled back in his head everytime I lifted him, and I knew that his pain was excruciating whenever I touched him. Did he want us to do this?

To get him jabbed with an IV and continue on with whatever pain was to come? Should I be asking myself such questions? Or, should we just try to preserve and prolong their lives without regard for clients’ possible wishes?

When faced with such a situation, all the education and thinking in the world doesn’t enter your head, it becomes an example of primeval humanity. The type that gave rise to communal civilizations, and a type that is often forgotten today. You just see the person who needs help, you don’t see the illness, you don’t see anything, you just act on impulse to help and preserve life. But with this illness, in India, today, can life be more miserable than death…am I a bad person for saying that, whether or not it is true? These thoughts don’t enter your head whether you help, but days after a client commits suicide, they do.

The Chaos Within - Jesus Saves

There are blogs that have come and gone in these last few months... thoughts that have pushed themselves forward with such force that my fingers have itched to write, to empty myself... and then there is what requires to be done on the ground: awareness sessions, meetings, visits, deaths, client gatherings, planning events, dancing... sitting down to empty thoughts onto a computer screen don't seem so important.

These past few months have been marked by so much that I don't even know where to begin, and I am also conscious that we have ex-volunteers and other friends of the project and Deep Griha that follow our progress via the blog, so... no more excuses. We will write more often, and although someone noted that all the blog is about is HIV these days... well, in our defense that is what we do...

I will not attempt to condense everything that has happened into one blog, rather I will try and write about what happened and how what happened has affected us, and pushed us to think of different approaches, or just helped us realise that once again, answers are not always possible.

I was in Nagaland last month. Lush Green. Military presence. The reason they're there - the Underground. Drugs. HIV. Colour. Jesus.

Nagaland is predominantly Christian. (See churches and crosses pic above, just outside Dimapur) The tribal landscape, and the disorganised towns have crosses and churches scattered about, leaving you in no doubt as to the Naga's choice of faith. Dimapur - where the Sahara research project on HIV and orphans is based - is a sleepy garrison town on any given day, and then on any given Sunday, it's just a little sleepier. Our God ordained day of rest.

The complexities of this place cannot be laid out in a blog, much less by someone who visited the state for just over a week. The drug rehabs and HIV projects we visited however threw up some interesting issues that struck us as peculiar to Nagaland. The most notable being how difficult it was to sustain the projects. Funds are not easy to come by, and while the Gates Foundation, Global Fund, NACO and all the players are playing, grassroots initiatives often continue to suffer.

One project, just about to start shared this with us:

"We can't raise money here. There are no companies, no businesses that can support us. Not even the church. The underground demands 25% of our income, if we are unlucky enough to be in an area where there are two rival factions, then the other faction would also demand 25% of our income, the church demands 10% as tithe for God, and what people are left with they need to struggle through till the end of the month. Why will they help us? We are drug addicts."

Every project we visited also spoke of the Church, and the successes and failures of working with God's places of worship. Some churches were welcoming of addicts, ensuring their stories were heard, and that they were supported. Others were paranoid and dismissive. This despite both church leaders and NGO community leaders agreeing that the church was well placed (and well funded) to be the community focal point for young people... and of course even those who are HIV positive... While some Nagaland churches have got their head around the need to reach out to and support PLHIV, others still consider them to be cursed by God for their addiction/promiscuity/homosexuality.

We passed an opulent church in Dimapur, central air conditioning, state of the art everything, and I was again pushed to wonder about what the carpenter who died on the cross would have thought about what we do in his name.

'Jesus Saves' and I think a lot of his followers do a pretty good job of saving too, money that is.

It's the same here in Pune. Churches have fat bank accounts, community halls, schools, everything, which is fantastic... no 'HIV people' though. When we approached one church in Pune with the request to run a 'Be an HIV Positive Church' programme, they didn't want us to be referred to as HIV positive because that would infer that HIV positive people are in the church and that's not ok.

This is ignorance. Clearly. These are good people, they are just not ready to accept the reality of HIV in their city, because they believe that HIV is not an issue within their congregation... and it never will be, because HIV+ people will not feel welcome, and those who are HIV+ will never disclose their status within a church environment because of the stigma and discrimination that results from the ignorance and fear...

The church is therefore well placed to continue ignoring the reality, if they choose to do so...

This week we had a meeting with Rev. Dr. Dasan from the United Theological Seminary in Pune. We (as Wake Up Pune) had approached UBS with the idea of organising a national conference on HIV and the Church. They have agreed. Now many would argue that UBS is an academic institution and therefore more open to discussing 'relevant' issues like HIV. The point is however that institutions like UBS are the mothers that push out priests and pastors into the world. What young men and women learn at theological schools and seminaries is what colours their lives of service...

We wish it was that simple. What young men and women learn at seminary is often what they refuse to talk about because of the (perceived) fragile faith of their congregation.

A conference therefore is not good enough... expand to a debating tournament, where the issues of HIV and the Church will have to be looked at from every angle, and not just from the preconceived angle one is comfortable with. Liberal students may have to argue conservative standpoints, and vice versa...

This is not good enough... our plan following this conference is to help UBS expand its already excellent student community programme so as to bring students face to face with the issues on the ground, outside of lecture halls and under-leafy-tree discussions.

This is still not good enough... in the end it is the student (read future shepherd) that must take HIV with him or her to church.

We are currently piloting a programme with corporates in Pune where we speak of 'infecting people with knowledge', infecting people with 'access' to make informed decisions. The need for civil society to rise and fight the epidemic is not limited to marching in the streets and screaming slogans till you're hoarse... it just involves breaking the silence about HIV, talking about it, and realising that if I can protect myself, so can the people I care about... and the virus of knowledge can spread.

Jesus saves... ok, let's help him save, here, now, in the life before death.

"A Harmful Effect on Youth"

Which of these things is likely to have the most harmful effect on youth? a) contracting HIV b)becoming pregnant c) enjoying sex with a condom?

Condoms are scientifically proven to be more than 99% effective in preventing the transmission of HIV and are similarly effective in family planning use. This medical fact is endorsed by the Indian government and many other governments around the world who promote condom usage as an effective component of preventing the transmission of HIV, along with responsible family planning practices...especially in a country growing as quickly as India.

The problem with this is that condoms have not been successfully integrated into Indian lifeways and cultural norms and are often a taboo subject and one to which a large number of people are ignorant as to the proper use. As earlier blogged about, when they are distributed for free by government sponsored organizations and many NGOs they are handed out like candy (literally in similar packaging sometimes) and their proper use is not explained.

Condoms can only perform their function to 99%+ efficiency when used properly and CONSISTENTLY. It would seem in the government's best interest to do anything possible to bring more of its people into the fold of condom users. Yet, this is evidently not the case in Madhya Pradesh.

Madhya Pradesh's cabinet minister and others recently have begun proceedings to get a government ordered ban on a new vibrating condom called Crezendo saying, "It is bound to have a harmful effect, especially on youngsters." Unless the vibrating effects cause harm to sensitive areas I can't see how any additional condom users with harm youth, especially given that the alternatives could be as serious as contracting any number of STIs, including HIV, or an unwanted pregnancy.

The argument of the government is based on the assertion that the vibrating nature of the condom makes it a sex toy. Sex toys are illegal in India. Apparently, sex isn't supposed to be an act that one should try to maximize the enjoyment of in any way. The government officials are particularly horrified by the assertion in the accompanying booklet that the vibrating component of the condom can be use for self-pleasure. They liken government endorsements of condoms such as this to government endorsement of blue movies.

It is clear with such complaints that India has come a long way since the temples of Khajuraho and the Kama Sutra. It has gone from a society open to sex to a pseudo-conservative society that pushes its supposedly "moral" values on the public while ignoring the fact that with its exploding population has topped 1.2 billion and a world leading 5.7 million of them live with HIV. Both of which are numbers that lead to a strain on already meager and underfunded resources to support such large populations.

I think it is time that government officials such as these in Madhya Pradesh put aside their own personal agendas as moral police long enough to open their eyes to two problems that are consuming India, the India they serve: over population and HIV. Anything that increases condom use is in the best interest of India. If it increases the enjoyment of sex in the process, I think we can all think of worse side effects.

One day in India's news...

"Docs look the other way, HIV+ve patient's husband delivers baby"; "Potential cure for HIV discovered"; "Bhugaon School turns away two HIV Students"

All three of these headlines appeared in the June 29th Indian Express...
The articles about the Bhugaon School and the Potential cure for HIV both appeared on the front page, while the one about the pathetic doctors appeared on the second.

I'll discuss the positive article first. A potential cure for HIV has often been talked about as some mythical objective relegated to the world of science fiction. The nature of the H.I. Virus means that it inserts itself into the body's cells and once implanted firmly, has the capacity to force the infected cells to produce new, equally infected, cells. It also has the capacity to exist in the body in a resting state, meaning that it is inactive and indetectable for a number of years before lashing out and spreading quickly. Such a viral condition means that it is difficult to have a drug that constantly targets the active virus, because some components of the virus can be active while others are passive, thus making it difficult to combative enzymes that could knock out the virus to recognize the foreign virus.
The new research shows that a new enzyme has been found which can recognize HIV and recombine the very DNA structure of the H.I. Virus to neutralize it and cut it out effectively from infected cells.
The article, while being eminently optimistic about the future potential of this little enzyme, is also very cautious about being too forward in suggesting that this cure will be on the drug shelves any time soon. It hasn't been proved in anything outside of suceeding in a laboratory setting in three months in cutting out HIV from laboratory controlled human cells. The main benefit of this research is that it has potential to go further with testing.
To put this in the Indian context however, we must realistically admit that while it may be years away from being able to effectively battle HIV in the west, it is further away than that even for our clients from resource limited settings, unless they find themselves chosen for a drug trial.
It is reasonable to get excited about potential cures, yet while we remain optimistic on this front, we must also confront the grim realities of our previous reasons for celebration, including ART.
Anti-Retroviral Therapy was celebrated for reducing HIV in Magic Johnson's body to undetectable, it has worked similar miracles for many people around the world, but largely those in the west and those financially able to fund their treatment. To our clients here in Pune, and similar clients around the world, even ART is not accessible.
ART is on the horizon however, with India's governmnet promising 100,000 people access to it, we must do more to get the government to meet these goals as they have only delivered it to 18,000 of their countrymen and women.
We can celebrate global advances in the fight against HIV, yet we must remember where we work, we do not work in a lab, we work on the ground, and on the ground we must stay grounded in reality, and the reality is that economics still drives science and health. Until something happens to ease the economic burden of ART, many will weaken and die unnecessarily before the glimmer of hope for a cure even reaches the horizon of their thoughts.

Regarding the recent news that several schools in India have been denying admission to positive children, Wake Up Pune released a strongly worded rebuke to the school system and called on the state government to intercede in the matter. There is precedent for this, Kerala's high court recently ordered that five positive children denied their basic human rights of schooling recently be admitted to the school. Locally, a school in Sangli just reversed the error of their ways in bowing to local pressure to admit 28 positive children. The difference in these two stories however comes from the reaction after the children were admitted. We can only do so much to help the students get admitted, perhaps the greater challenge is reducing the society wide stigma that leads to them being denied admission, and then not fully welcomed once admitted. In Kerala, many parents withdrew their children from the school in protest to the admittance of the HIV positive children. Why did they do this? Ignorance. Children will not get HIV from interacting with other children. If you possess even basic knowledge about the virus this is understood, yet it is clear that without adequate education Indian society will continue to be retrograde in addressing this pressing issue and many more children will be unnecessarily denied their rights and stigmatized. There is hope, in Sangli the children were welcomed with flowers and community support. We can only hope that community action and increased awareness will drive a similar result in this Bhugaon case.

The third article provoked my most visceral reaction. Doctors are supposed to be the most educated and the most willing to help those in need. Yet in Meerut, at a Medical College, doctors shouted instruction across a room to a father on how to deliver his child while his HIV positive wife was in labor. Thankfully, and somehow luckily, the child was delivered healthy and HIV negative. The father had to cut the umbilical cord himself and then clean the bed and burn the soiled clothes outside. DOCTORS in India are SILENT, DOCTORS in India are IGNORANT, DOCTORS in India have FEAR, DOCTORS in India have STIGMA, and DOCTORS in India DISCRIMINATE against those who have HIV. If our most esteemed medical professionals don't know how to handle a situation affecting 5.7 million people in their country then where are we at the grassroots? Who are the role models? This needs to change.

The creche and balwadi's

I arrvied just over two weeks ago. I was here as a Link volunteer last year and really wanted to come back....so here I am.
I wasn't sure what I wanted to do this time, but I definately wanted to work with children. So I was assigned to work with the Toys for Tots project in the creches and balwadi. Alongside collegues, Jane, Natalie and Jade, we all distributed clothes and toys to all the creches ana balwadi's.

Now that all the clothes and toys, etc have been distributed, it is my job to go around the creche and check on discipline, use of toys etc... The sad thing is, that most of the time, the toys sit in their boxes gathering dust, which is very sad.
The changes that we have made by introducing medical and health kits, means that (hopefully), the attitudes will change and the creches and balwadi's will be a happy place.


But it is going to take a lot of time and patience, it ain't gonna happen overnight!