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.