Unusually, the Jakarta Post on Wednesday published an opinion article on its front page. Headlined "Taking charge in a transition", it was by Sri Mulyani Indrawati, Managing Director of the World Bank Group and a former finance minister of Indonesia. For some reason (probably copywrong), this article is not accessible on the Post's web site, but I managed to find it at its original location, under the headline "Winning the Transition."
Although having no direct connection with HIV, I commend this article to you for its clarity and simple language - and because I'm sure that Ibu Sri does have an indirect impact on HIV here, an impact which hopefully will increase.
Indonesia is lucky in having many women like Ibu Sri. Another closer to home is our Minister of Health, Ibu Endang R Sedyaningsih. An ex-AIDS activist, she's now attempting the Herculean task of sorting out the culture of her ministry, sullied as it is by alleged corruption by several of her predecessors (not all female leaders can be trusted!).
There's another women making an impact, Ibu Sri Pandam Pulungsih. This Ibu Sri was previously a very caring Medial Services Director at the Infectious Diseases Hospital in Jakarta, and is now a hugely respected WHO manager, working on their response to HIV in Jakarta.
We are lucky to have so many talented and dedicated women in Indonesia. Standing shoulder to shoulder, they give us hope for the future.
Babé
Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts
Saturday, 30 July 2011
Wednesday, 9 December 2009
Grace under pressure
It's not only acronyms that lose their meaning. Take 'stigma and discrimination'. 'We' often refer to these without really thinking about what they really mean.
I remember back in 1996, when we were planning the first national Candlelight Memorial, we prepared a flier referring to the Indonesian term 'diskriminasi'. I guess that even if you don't understand Indonesian, you can guess what that means. Unless you are Indonesian. Very Kamil, then working with Lentera in Jogja, was in the meeting and asked the meaning of the term (I think he knew, but ...).
Although I'm not an etymologist, it always seems to me that, if a word for the concept does not exist in the language, chances are the concept does not exist in the country. After all, you need a word to describe the concept. And this is especially true for discrimination. In a feudal society (like that in many parts of Indonesia), you don't know you have rights, let alone what those rights are. So how can you talk of violations of rights?
Anyway, in the end we responded to Very's concern (as we still do) by adding in parentheses 'perlakuan yang tidak adil (unjust treatment)'.
Most HIV-infected people in Indonesia (and their families) have experienced discrimination. In my experience, it has usually been caused by lack of knowledge or understanding about HIV, and fear of infection resulting from lack of awareness of how HIV is transmitted (and not transmitted). Of course there are people who are just plain nasty, taking a moral (and often hypocritical) stance. But in my experience this is relatively rare in Indonesia. More often what is seen as discrimination against people with HIV in the health care settings is in fact the endemic discrimination faced by the poor. Those with money rarely face discrimination.
Stigma is more difficult. Again, there's no Indonesian translation, although we often refer to 'cap buruk (nasty mark)'. Actually 'cap' is perhaps more often understood to be the mark made by a rubber stamp (or a finger print). Indeed, recently infected people often feel like there is mark saying 'HIV' on their forehead. And this is indicative that self-stigmatization is at least a significant part of the problem.
All this came to mind at a meeting of the STOP TB Partnership Forum yesterday at which Care International presented outcomes of their TB program in parts of Banten (the province in Java west of Jakarta). In surveying community attitudes to TB, they changed the question on stigma to refer to 'social pressure'. I'm sure we could argue over the term for ever, but at least this caused me once again to think about what we really do mean by this term that we so often use without thinking.
Babé
I remember back in 1996, when we were planning the first national Candlelight Memorial, we prepared a flier referring to the Indonesian term 'diskriminasi'. I guess that even if you don't understand Indonesian, you can guess what that means. Unless you are Indonesian. Very Kamil, then working with Lentera in Jogja, was in the meeting and asked the meaning of the term (I think he knew, but ...).
Although I'm not an etymologist, it always seems to me that, if a word for the concept does not exist in the language, chances are the concept does not exist in the country. After all, you need a word to describe the concept. And this is especially true for discrimination. In a feudal society (like that in many parts of Indonesia), you don't know you have rights, let alone what those rights are. So how can you talk of violations of rights?
Anyway, in the end we responded to Very's concern (as we still do) by adding in parentheses 'perlakuan yang tidak adil (unjust treatment)'.
Most HIV-infected people in Indonesia (and their families) have experienced discrimination. In my experience, it has usually been caused by lack of knowledge or understanding about HIV, and fear of infection resulting from lack of awareness of how HIV is transmitted (and not transmitted). Of course there are people who are just plain nasty, taking a moral (and often hypocritical) stance. But in my experience this is relatively rare in Indonesia. More often what is seen as discrimination against people with HIV in the health care settings is in fact the endemic discrimination faced by the poor. Those with money rarely face discrimination.
Stigma is more difficult. Again, there's no Indonesian translation, although we often refer to 'cap buruk (nasty mark)'. Actually 'cap' is perhaps more often understood to be the mark made by a rubber stamp (or a finger print). Indeed, recently infected people often feel like there is mark saying 'HIV' on their forehead. And this is indicative that self-stigmatization is at least a significant part of the problem.
All this came to mind at a meeting of the STOP TB Partnership Forum yesterday at which Care International presented outcomes of their TB program in parts of Banten (the province in Java west of Jakarta). In surveying community attitudes to TB, they changed the question on stigma to refer to 'social pressure'. I'm sure we could argue over the term for ever, but at least this caused me once again to think about what we really do mean by this term that we so often use without thinking.
Babé
Friday, 27 November 2009
Preaching to the converted
When I was a lad attending Tech College in Chelmsford, in Essex in eastern England, I lodged at a hostel right next to a church. I still remember how my Sunday morning hung-over sleep was interrupted by the peel of the bells from the church, calling the faithful to prayer. I was reminded of that as I was on my morning walk today, this time around the Lubang Buaya monument to the generals slain in 1965 during the so-called communist uprising. (The paths on my preferred walk would be very muddy following heavy rain yesterday.) It being Idul Adha (the Muslim Festival of the Sacrifice), the many mosques in the area were at full blast, and my ears were assaulted from all sides.
The letters pages of the Jakarta Post have long been bombarded by complaints about this, with comments reaching a crescendo after the reports that Cairo is taking steps to address this babel (One voice for Cairo's call to prayer). What seems to be clear is that several mosques appear to compete on the volume, rather than the quality, of their muezzin's call. The result is an often ear-splitting cacophony, which almost certainly exceeds the limit that can cause lasting ear damage.
Why do I bring this up? Because we in the AIDS community tend to act in the same way. We compete with each other on the volume of our shouts, rather than on their quality. We preach to the converted, just like the mosques, particularly in our increasingly shrill exchanges in our mail lists and forums. And, like the mosques, it all rises to a peak on specific days. At this time of year, our fax machine runs out of paper with all the invitations to events. If we attend, we'll find the participants are primarily 'same old, same old.' And many organizers will also be asking for us to arrange a 'rent-a-PLHIV' to present 'testimony' at the event. (My friend Wahyu says that his price for testimony is three million rupiah, but he's free if invited as a speaker.)
Happy World AIDS Day!
Babé
The letters pages of the Jakarta Post have long been bombarded by complaints about this, with comments reaching a crescendo after the reports that Cairo is taking steps to address this babel (One voice for Cairo's call to prayer). What seems to be clear is that several mosques appear to compete on the volume, rather than the quality, of their muezzin's call. The result is an often ear-splitting cacophony, which almost certainly exceeds the limit that can cause lasting ear damage.
Why do I bring this up? Because we in the AIDS community tend to act in the same way. We compete with each other on the volume of our shouts, rather than on their quality. We preach to the converted, just like the mosques, particularly in our increasingly shrill exchanges in our mail lists and forums. And, like the mosques, it all rises to a peak on specific days. At this time of year, our fax machine runs out of paper with all the invitations to events. If we attend, we'll find the participants are primarily 'same old, same old.' And many organizers will also be asking for us to arrange a 'rent-a-PLHIV' to present 'testimony' at the event. (My friend Wahyu says that his price for testimony is three million rupiah, but he's free if invited as a speaker.)
Happy World AIDS Day!
Babé
Thursday, 26 February 2009
The injustice of discrimination
Activists here frequently press for a law on HIV. The current legislation does not mention HIV specifically, and there is fear that the law on contagious diseases (which allows for quarantining of those infected) might be applied to HIV infection. We all know that HIV is not contagious, but the difference is not clear in Indonesian.
There is also hope that a law on HIV would outlaw discrimination. In fact discrimination in the health care sector is prohibited by the 1945 Constitution. This should be enough, but although one of the most prominent lawyers here, Todung Mulya Lubis, over ten years ago offered to take any cases of discrimination against people with HIV to court for free, no one has yet to take him up on that offer. Why? Perhaps because the law here is unpredictable. And certainly it would be impossible to guarantee anonymity - in fact almost certainly the plaintiff would become famous!
But most discrimination occurs because of fear, caused by lack of understanding, caused by lack of information. As I raised many years ago in a case involving Dr. Samsu, is it appropriate to take people to court for ignorance? Yes, I know 'ignorance of the law is no excuse', but surely the first approach must be to inform people. Of course there are 'bad' people who enjoy exercising their prejudices, but in my experience that's fairly rare here, at least among the medical profession.
But back to a law on HIV. I've always opposed this for a number of reasons. Firstly, would it not be seen as further exceptionalising AIDS? If we need a law on HIV, don't we also need one on hepatitis? And what will happen when the successor to AIDS appears - as it inevitably will? Will we have to wait years again for a specific law covering it? In my view, much better we develop a more general law which can apply to all infectious (but not contagious) diseases now and in the future.
The second reason is that it is easy to start a movement for a new law. But it is impossible to predict how it will develop. I am very scared that, particularly given the moralising by members of parliament which was characterised by the pornography law, we could end up with a law which does more harm than good. I'll return to this topic in a future post.
I have suggested that we should work to get HIV and other infectious diseases covered more generally in existing laws, particularly Law No, 23 from 1983 on Health and/or Law No. 4 of 1984 on Contagious Diseases. In fact, I was involved in work that started some time back with the Parliament to develop amendments to these laws. However this effort expired as the life of that Parliament ended.
Fact is that the Parliament has a huge backlog of draft laws, so there's not much hope of anything effective happening soon. I guess we're left with current advocacy approaches, which may in fact be more appropriate.
Babé
There is also hope that a law on HIV would outlaw discrimination. In fact discrimination in the health care sector is prohibited by the 1945 Constitution. This should be enough, but although one of the most prominent lawyers here, Todung Mulya Lubis, over ten years ago offered to take any cases of discrimination against people with HIV to court for free, no one has yet to take him up on that offer. Why? Perhaps because the law here is unpredictable. And certainly it would be impossible to guarantee anonymity - in fact almost certainly the plaintiff would become famous!
But most discrimination occurs because of fear, caused by lack of understanding, caused by lack of information. As I raised many years ago in a case involving Dr. Samsu, is it appropriate to take people to court for ignorance? Yes, I know 'ignorance of the law is no excuse', but surely the first approach must be to inform people. Of course there are 'bad' people who enjoy exercising their prejudices, but in my experience that's fairly rare here, at least among the medical profession.
But back to a law on HIV. I've always opposed this for a number of reasons. Firstly, would it not be seen as further exceptionalising AIDS? If we need a law on HIV, don't we also need one on hepatitis? And what will happen when the successor to AIDS appears - as it inevitably will? Will we have to wait years again for a specific law covering it? In my view, much better we develop a more general law which can apply to all infectious (but not contagious) diseases now and in the future.
The second reason is that it is easy to start a movement for a new law. But it is impossible to predict how it will develop. I am very scared that, particularly given the moralising by members of parliament which was characterised by the pornography law, we could end up with a law which does more harm than good. I'll return to this topic in a future post.
I have suggested that we should work to get HIV and other infectious diseases covered more generally in existing laws, particularly Law No, 23 from 1983 on Health and/or Law No. 4 of 1984 on Contagious Diseases. In fact, I was involved in work that started some time back with the Parliament to develop amendments to these laws. However this effort expired as the life of that Parliament ended.
Fact is that the Parliament has a huge backlog of draft laws, so there's not much hope of anything effective happening soon. I guess we're left with current advocacy approaches, which may in fact be more appropriate.
Babé
Friday, 13 February 2009
A victim without murmuring
I've written before about the Denver Principles, proclaimed by a group of HIV-positive activists in 1983 at the first AIDS conference. I noted then the preamble to the declaration, which noted:
I personally feel even more strongly than those early activists that the term is totally inappropriate - and almost dangerous. Because it suggests that we have no control over what happens to us, that it is all the fault of someone else. Perhaps for some (clearly for babies), this may be true, but does it help to spend the rest of your life blaming others?
It sort of raises the question: for how long is an 'accident victim' a victim? For life? Even if they suffer disability, surely there must be a limit to how long they consider themselves victims? Most are able to get over it and get on with their lives; why not people with HIV?
Is this different for drug users? They have formed the Indonesian Drug Victims Network. Partly this is to avoid being considered criminals; the law is thought to treat victims more humanely. But does that mean they have to be victims all their lives?
There must be a 'statute of limitations' for victims...
Babé
We condemn attempts to label us as ‘victims,’ a term which implies defeat...Yet 25 years later, some of us are quite happy to be given that label - at least the Indonesian language equivalent, "korban' (which also means 'sacrifice' as in a religious offering). A year or so back, a group of people living with HIV demonstrated at the Hotel Indonesia circus in Jakarta (the favourite place for such activities) wearing T-shirts proclaiming themselves to be 'AIDS victims'.
I personally feel even more strongly than those early activists that the term is totally inappropriate - and almost dangerous. Because it suggests that we have no control over what happens to us, that it is all the fault of someone else. Perhaps for some (clearly for babies), this may be true, but does it help to spend the rest of your life blaming others?
It sort of raises the question: for how long is an 'accident victim' a victim? For life? Even if they suffer disability, surely there must be a limit to how long they consider themselves victims? Most are able to get over it and get on with their lives; why not people with HIV?
Is this different for drug users? They have formed the Indonesian Drug Victims Network. Partly this is to avoid being considered criminals; the law is thought to treat victims more humanely. But does that mean they have to be victims all their lives?
There must be a 'statute of limitations' for victims...
Babé
Monday, 9 February 2009
A distant voice in the darkness
I have on several occasions referred to the longer-term threats to survival which face many people with AIDS in Indonesia. Perhaps the greatest threat will be caused by the high prevalence of viral hepatitis co-infection among those with HIV in Indonesia - probably as high as 50%. The effects of this co-infection will start to be felt early in the next decade, given the longer 'latency' of viral hepatitis.
Whereas there is an increasing number of treatments for HIV, treatment for hepatitis C seems to be stuck in a time warp, with still only two drugs available, both of which must used together, at unaffordable cost, with excruciating side effects, and having a very low success rate - less than 30% among co-infected people. But without this treatment, they will start to suffer liver failure, which (without liver transplants - again rarely accessible) will be fatal. It'll be like we're back in the 90's.
There are estimated to be more than 170 million people with chronic hepatitis C infection around the world, significantly more than the number living with HIV. So why do we only have two awful drugs to treat a curable disease, while we have more than 20 for HIV? Part of the reason is that the hepatitis C virus was identified several years after HIV.
But it is difficult not to draw the conclusion that there hasn't been the pressure. Prof Joep Lange, in his closing presentation at the recent HIV-NAT Symposium, made the point that we were very lucky that the HIV epidemic first became apparent among gays in America. If it had appeared as an affliction of poor black people in Africa, would there have been the same pressure to discover new drugs, to determine the cause. Surely, not! The parallel with hepatitis C is obvious.
Of course, there is a significant number of people with hepatitis C in the West. But they are not a homogenous group; indeed, many of them are 'junkies' (since hepatitis C spreads among injecting drug users in the same way as HIV, just ten times more easily - 90% of such drug users in Indonesia have hepatitis C). But also people are not (yet) dropping dead with the disease, and particularly not at such an early age as they did in the early 80's with HIV.
The message is clear: we need much, much more activism to press for development of new drugs - and a vaccine - for hepatitis C infection. Sadly the voices are very muted.
Babé
Whereas there is an increasing number of treatments for HIV, treatment for hepatitis C seems to be stuck in a time warp, with still only two drugs available, both of which must used together, at unaffordable cost, with excruciating side effects, and having a very low success rate - less than 30% among co-infected people. But without this treatment, they will start to suffer liver failure, which (without liver transplants - again rarely accessible) will be fatal. It'll be like we're back in the 90's.
There are estimated to be more than 170 million people with chronic hepatitis C infection around the world, significantly more than the number living with HIV. So why do we only have two awful drugs to treat a curable disease, while we have more than 20 for HIV? Part of the reason is that the hepatitis C virus was identified several years after HIV.
But it is difficult not to draw the conclusion that there hasn't been the pressure. Prof Joep Lange, in his closing presentation at the recent HIV-NAT Symposium, made the point that we were very lucky that the HIV epidemic first became apparent among gays in America. If it had appeared as an affliction of poor black people in Africa, would there have been the same pressure to discover new drugs, to determine the cause. Surely, not! The parallel with hepatitis C is obvious.
Of course, there is a significant number of people with hepatitis C in the West. But they are not a homogenous group; indeed, many of them are 'junkies' (since hepatitis C spreads among injecting drug users in the same way as HIV, just ten times more easily - 90% of such drug users in Indonesia have hepatitis C). But also people are not (yet) dropping dead with the disease, and particularly not at such an early age as they did in the early 80's with HIV.
The message is clear: we need much, much more activism to press for development of new drugs - and a vaccine - for hepatitis C infection. Sadly the voices are very muted.
Babé
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