Maung

Shadowdancer Puppet

Maung is from Rangoon. This is his first video. He has lived most of his life in a refugee camp in Thailand.

It was his idea that the other children involved in Show Me Your Life (they will be from South Africa) might be shadowdancers, too.

For Maung, a shadowdancer is a puppet. Who is a human being. Who is a puppet. Who dances.

I do not know where Maung gets his ideas from. I do not know his culture well. I do know that life in the refugee camps along Thailand’s borders are hell to survive.

Maung would like to be a mentor in Show Me Your Life. After all, he’s made one video.

But he has shown here something of his life.

Maung is taking the characters of his life and he is putting them center stage. Out of the margins and out of the shadows so we might see what he sees.

This would be his life whether we understand that life or not.

I know little about the camps in Thailand. I know that one thing that haunts the shadows of the camps is HIV. I am here to learn. It is something of a dance, this, too; sometimes in shadows thick as jungleweed and guns.

Show me your life.

Maung, and his younger brother, Kyine,  are refugees from Rangoon. They have grown up in a border refugee camp. Having fled a roving pack of murderous child-soldiers from Myanmar (Myanmar is one of the renegade countries that conscripts children as soldiers; the other countries being Chad, the Democratic Republic of Congo, Somalia and Sudan), the two brothers suffer from a serious case of Post Traumatic Stress. In a desperate attempt to leave the camps, Maung and Kyine’s mother escaped to Ratchadaphisek, the focal point of red-light district sex work in Bangkok. She was, of course, “helped” to escape by Thai traffickers who specialize in the Burmese. Within a month, all three were heroin addicts who needed a fix to do the work they did. The mother is dead. The boys have HIV/AIDS.

I would like to take this opportunity to point out that all of the boys’ tricks were American and Japanese men.

At the moment, both boys are experiencing great difficulty holding down the antivirals. Half the time, they just vomit them up. Marijuana helps some. There is a huge language gap. We play a lot of sign language games. Kyine usually cries all night. They are very close and miss their mother. Their father was killed in Rangoon.

The three of us make art every day. They are most intrigued with the hand-made book I am creating. I call it Tristan’s Moon. They flip through the pages I have painted on with a rapt curiosity. Both boys have been playing with my Mac and Flip camera. I don’t really care what the boys do with the Flip. The cheap fucking thing is broken anyway. It sucks up batteries. Kodak Playsport is durable, waterproof and creates superb quality images.

The Chinese human trafficking gangs — very active in Bangkok — have tried to nab them. The boys were taken in by monks. Most of the monks are kind but they just assume the boys will die now. I do not agree.

You should see them with a paintbrush.

I do not read to the boys. I am not Grandma Binkle. We look at pictures. Pictures of death and soldiers and jungles and men in brothels. They point. Nod. They know this and this and this and this.

I nod.

Both boys are the current focus of a medical study. Their mother died of TB/HIV co-infection. But while the brothers are HIV/AIDS, they have some kind of immunity against TB. Why. No one knows.

But we’re on it.

By playing with the camera and the computer, by painting with me, by pointing and nodding at particular pictures (it empowers them to express that they endured these things), Maung and Kyine are reinventing themselves. Forty pounds soaking wet.

I know this: It takes a wad of money to support two boys whose blood is being studied. There is no end game in sight. As the boys approach adolescence, we will still need to study them.

We need THEM. It would serve us well to take good care of them. That does not mean food, water, shelter.

It means medical attention for AIDS, the appropriate medicine, and attention to severe post traumatic stress.

Three medical researchers have called for more data on patient-important outcomes, cost-effectiveness and impact of new diagnostics for tuberculosis. The authors, Doctors Madhukar Pai, Richard O’Brien and TDR scientist Andrew Ramsay, say almost all existing primary trials of TB diagnostics are focused on accuracy, and thus the available systematic reviews are almost exclusively focused on meta-analyses of sensitivity and specificity. They call for future diagnostic studies to go beyond the conventional paradigm and address meaningful clinical impact outcomes.

TDR leads the way. TDR, a Special Programme for Research and Training in Tropical Diseases, is a global programme of scientific collaboration that helps coordinate, support and influence global efforts to combat a portfolio of major diseases of the poor and disadvantaged. Established in 1975, TDR is based at and executed by the World Health Organization (WHO), and is sponsored by the United Nations Children’s Fund (UNICEF), the United Nations Development Programme (UNDP), the World Bank and WHO.

Two buzz words: Immunity and inflammation are changing the way we regard disease.

And Americans wonder why I am so impatient. Fuck them.

My own word of caution to TDR is related to Wyeth Pharmaceuticals. For Big Pharma to be one of the major contributors is the road to very expensive conflicts of interest. Big Pharma wants to make money. TDR wants to cure disease. There is a difference. I am fundamentally uncomfortable with the poverty mentality that says we will take it wherever we can. Although I do it myself every day. I do not know what the answer is. I know this: It takes a wad of money to support two boys whose blood is being studied. There is no end game in sight. As the boys approach adolescence, we will still need to study them.

We need THEM. It would serve us well to take good care of them. That does not mean food, water, shelter.

It means medical attention for AIDS, the appropriate medicine, and attention to severe post traumatic stress.

This, of course, is the Tim Barrus version of this story. I will take the prerogative of changing what the fuck I think should be twisted so their privacy is ensured. Hang me by my balls, Los Angeles Weekly. Fucking rag. Get it right. I will paint this painting however I damn well please.

I don’t really give a flying fuck what you believe. You are not my concern. I don’t owe you anything. I owe THEM.

We NEED them.

Here’s what I think you should believe: Sweden kicked in more than we did. Norway kicked in more than we did. The UK kicked in more than we did. These are not big countries. The World Bank kicked in more than America did.

But America kicks in more on AIDS.

So fucking what.

The scientists at WHO know what a joke the numbers game is that suggests we are making progress with HIV.

“We are not really making progress with HIV,” Bill Gates insists. He has put his money where his mouth is. “I was naive.” And his face goes grim. 

Mexico should be ashamed of itself. It is a part of the world community, too. Cuba, why even bother. It doesn’t pay for one scientist’s lunch. Why is Big Pharma even there at all and when did Big Pharma become a country. What are they trolling for. A lot of people who yell at me about the UN and at the UN have a long history of association (employment) with Big Pharma. “You need to reevaluate your priorities,” is what I tell them.

When I am at the UN, I am constantly walking into the wrong office. The office workers go on for daze. What do all these people do.

What are we, America.

Show me your life.

Total $ contributed in 2008 & 2009:

Belgium $3,221,083 

Brazil $7,500 

China (People’s Republic of) $110,000 

Commission of the European Communities (CEC) $1,181,918 

Cuba $10,000 

Denmark $3,983,065 

Germany $2,537,972 

Ghana $15,000 

India $50,000 

Iran (Islamic Republic of) $10,719 

Ireland $314,465 

Italy $3,573,746 

Japan $800,000 

Luxembourg $3,591,754 

Malaysia $50,000

Mexico $10,000 

Netherlands $2,347,540 

Nigeria $101,865 

Norway $7,130,735 

Panama $14,000 

Spain $104,589 

Sweden $6,281,407 

Switzerland $3,406,126 

Thailand $44,841 

Turkey $10,000

United Kingdom of Great Britain and Northern Ireland $9,516,118 

United States of America $4,789,165 

APOC - World Health Organization (WHO) $1,400,000 

Bill & Melinda Gates Foundation $2,585,806

ExxonMobil Foundation $1,000,000 

Foundation for Innovative New Diagnostics (FIND) $418,510 

Global Forum for Health Research $29,425 

Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) $292,000 

International Development Research Centre $2,046,958 

International Federation of Pharmaceutical Manufacturers Associations $1,000,000 

International Vaccine Institute $100,000 

Liverpool School of Tropical Medicine $79,243 

Medicines for Malaria Venture (MMV) $174,434 

Miscellaneous $957,173 

Oswaldo Cruz Foundation (FIOCRUZ) $74,980 

Population Services International (PSI) $1,038,000 

Rockefeller Foundation $750,000 

United Nations Development Programme (UNDP) $120,000 

University of Heidelberg $27,095 

World Bank $5,700,000 

World Health Organization $2,850,479 

Wyeth Pharmaceuticals $3,600,000

Thailand / Cambodia

WARNING: Explicit Imagery and Colloquial Language

Human Immunodeficiency Virus (HIV)

Acquired Immune Deficiency Syndrome (AIDS)

The World Health Organization estimates that there are at least two million sex workers in Thailand. Most are in Bangkok. The NGOs in Thailand, however, think that there are actually three million adult female prostitutes, and another million child prostitutes; both male and female.

The scientists at WHO know what a joke the numbers game is that suggests we are making progress with HIV. “We are not really making progress with HIV,” Bill Gates insists. He has put his money where his mouth is.

AIDS Hospice

http://kelly-in-thailand.blogspot.com/ August 8, 2008

Our final academic stop for the week was at an AIDS Hospice located in Lopburi, Thailand, about two hours north of Bangkok, deep in the countryside. The hospice is actually a temple, called Wat Phra Nam Phu, a beautiful sanctuary-like compound home to several hundred people and families living with HIV and/or AIDS.

In the past, no medical professionals staffed the hospice and no drugs or medical treatment were used at all -- spiritual support was the only means of comfort available to people lviing out their last days, weeks, or months with the disease. Recently, however, things have been changing. In an incredibly controversial move, the Thai government ignored US and international patent laws and made one of the best treatments for HIV/AIDS -- the triple antiretroviral drug cocktail -- available through its national healthcare system. This means that the death rate at Wat Phra Bat Nam Phu has plummeted from 3-4 a week to about 4 a month, and many people are calling the temple a (slightly) more permanent home.

The stigma surrounding HIV/AIDS in Thailand is still strong, though places like this one are working to fight against it. Many of the patients were taken for a "trip to the countryside" by their families, and then dropped off in silence at the hospice gates, or even thrown out of the backs of cars or trucks. Others come to the temple to escape the censure and scorn of the outside world. Many were former commercial sex workers with few skills who find their former occupation now barred to them and have nowhere else to go.

One of the most moving testaments to the power of this stigma was found in the simple open-air temple pictured above. The stacks of white pouches are each filled with the ashes of a victim of HIV/AIDS who was abandoned at the hospice to die. After death, the bodies of each person at Wat Phra Bat Nam Phu are cremated and placed into labeled bags to be claimed by their family members. Those which have not been claimed after three months are placed in this temple below a statue of Buddha. I think the size of the stacks speaks for itself in showing just how far acceptance of victims of this disease has to go in Thailand.

One of the other controversial elements of Wat Phra Bat Nam Phu is called the "Life Museum," a kind of mausoleum containing the dessicated bodies and preserved body parts of those who have died on the compound. The corpses are tacked up on wooden boards in the open air, with small placards beside them listing name, former occupation, age at time of death, and means of contracting HIV. Before coming to the hospice, I had been under the impression that this gruesome display was meant to serve as a moral lesson to those still among the living -- behave yourselves and don't become HIV positive! -- but in fact the message was slightly different.

Interspersed with the bodies (which I chose not to photograph) were large posters with poems and lessons from Buddha concerning the fluidity of consciousness, the cyclic nature of life and death, the need to renounce material connections, and the ephemerality of the body as a vessel that carries us through the world for just a short time. I copied one of these poems into my notebook:

There's No "Me" "Me" myself doesn't really exist, So where well you find "my wife and kids"? Not to mention "my wealth" or "my stuff" Because I don't even have a "self" of my own! If those are the facts then whatever is it that Excites and sends body-mind moving around? It's just body-mind, haven't you noticed? Don't you know that body-mind is not "self"? It's merely wonderful, profound natural change That thinks, feels, speaks, and acts according to causes Just ordinary blind aggregates and elements Don't foolishly assume that "Me" exists.

I also copied the self-proclaimed message of the Life Museum itself:

The Spirit of those who have died here teaches us
how to think about our daily life today and in the future. We understand that life is all around us. But sometimes we forget that we are connected to all of life. Death is a part of life and we forget to accept this truth. Death leads to the birth of new life. We invite all of you
Who come to this place
To be silent
As you experience what you see here. This museum has many bodies That shows how death affects all of us Leading us to the truth That in this life we must do good for others.

There was so much good on view here in this place -- the good of the monks who work at the temple, accepting those whom the rest of society cannot even bear to touch, the beauty of the surrounding countryside, the serenity of this place which had been created with such care to attend to the spiritual and social needs of an already afflicted and persecuted population, the strong faith of the monks in the Buddhist philosophy of life, the generosity of the local and international tourists who donate money to keep the compound functional, the joy on the faces of two HIV positive girls playing ping-pong on the side of the road as we passed in a semblance of normalcy that would otherwise have been beyond them -- but it raised some deep ethical questions as well, and I left the hospice feeling moved but also troubled.

So much of the resources of the area seemed to be directed towards display and tourism -- perhaps a necessary move given the way the hospice is funded, but some of what we saw seemed almost too set up for display. In particular, we were given the option of walking through the clinical ward, a tiny corridor of cramped beds with people in their last throes of life. I stood outside, having nothing to offer these desperately ill people and unwilling to degrade their dignity still further by making them a spectacle for my personal edification. There are enough questions about displaying desiccated corpses in the open air as a method of public education -- what are we to say about the similar display of living human beings? On the other hand, does the "deterrence value" or "public good" of unvarnished interaction with people ravaged by this disease outweigh the individual violations of their integrity and respect?

I also wondered about resource allocation at Wat Phra Bat Nam Phu. Why did it take so long before drugs were made available to the patients there? (The government healthcare system had previously funded other antiretroviral treatments before the latest patent-violating move). There are echoes here of an old and familiar debate about end-of-life care -- at what point do life-extending treatments simply extend the patient's suffering unnecessarily? what does it mean to die with dignity? how strong is the physician's duty to save life at all costs versus allowing for a more painless death? -- yet in a way I think here the case is much clearer. The difference between treated and untreated AIDS cases in this day and age is not the difference between someone dying slightly sooner with less pain and someone dying slightly later with more pain. The difference is enormous, enough in many cases to transform AIDS from a devastating terminal illness to one which becomes almost a chronic condition: livable for many years, managed with medication. If the temple had strong religious reasons to forswear medication, then why did it recently decide to provide treatment and employ a minimal medical staff? (Very minimal, by the way: one nurse for five hundred patients, according to one person I spoke to, though that figure might not be correct).

Why were donated funds spent on beautiful Western-style toilets for visiting tourists and the construction (still underway while we were there) of a magnificent staircase and brass bell on display? The answers, I suppose, are to secure more revenue by attracting and wowing more donors, and for the greater glory of Buddha, respectively, yet each one leaves me slightly unsettled. Why bother trying to pull in more money if you're only going to spend it on further cosmetic improvements instead of on patient care? Buddha is not like God, who might be pleased with your offering and help save your patients, so too much ostentatious religious display is also mystifying.

There is no question that the monks and volunteers who work at Wat Phra Bat Nam Phu do wonderful work and have created a truly remarkable oasis for people who otherwise have nothing to live for. Yet there are questions about the means they have taken to this end, questions which still nag at me now, days later. If you are interested in learning more about the AIDS hospice, there was a story on PBS with several of the monks back in 2002, which you can check out here. An article skeptical, like me, of the commercialization of the site and exploitation of its patients, can be found here.