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AIDS: Whose virus is this, anyway?

It’s hard to really remember how frightened we all were of AIDS back in the 1980’s, when the existence of the disease was first widely acknowledged. You could compare it to the fear evoked by Swine Flu more recently, I suppose, except that unlike the much more democratic Swine Flu, AIDS was still the disease of junkies, poofs and hookers. It was their disease, the disease of deviants, freaks and shirt lifters, but instead of having the good grace to keep their disgusting ailments to themselves, they threatened to leak it out into the broader community. Their disgusting habits were going to kill us all.

In 1984, in my extended social group consisting of Melbourne Uni students and drop outs, radical activists, and dope smoking hedonists, heroin use spread like a minor plague. For most of those who tried it, with Velvet Underground blaring in the background, it was more about taboo breaking and experimentation than a desperate need for oblivion. A lot of people snorted it or smoked it a few times and then got on with their lives. But a few people used needles. And a few kept on using.

In the 1980s, it was remarkably difficult to get hold of a clean fit. The law was unclear, but most chemists would only sell to people with a prescription for insulin or another clear need. To write an article for Farrago, the student magazine, I did an informal survey. Disguised in grubby jeans and an old t-shirt, I dropped in at a handful of chemists around Melbourne Uni to ask for a needle to see what their response was. Most politely refused, one told me to get out before he called the police, and one handed it over without fuss. In the last case, I told him why I was asking for the needle and asked him to comment on his decision for the record. While he strongly believed that hypodermic syringes should be available, he recoiled in horror at the idea that the availability of needles at his business should be publically advertised.

In this climate, people who used injectable drugs often shared their syringes. Actually, the people most likely to share needles were the dilettantes, the ones who only used occasionally. The regular users almost always had their own and didn’t pass them around (as a friend once said, “Full on junkies are such selfish bastards, they don’t share anything!”).

It was around 1985 or 86 that free tests began to become widely available to the public in Melbourne. Many of my friends, including both drug users and non-users, decided to get a test, me amongst them. The two best friends I shared a grubby student house with, Horse and Carolyn, a couple who both used injectable drugs, also got tested.

They both came back positive. Carolyn was, in fact, the first woman in Melbourne to be identified as HIV positive. It was another five days before my own test results came back. I was certain, beyond any reasonable doubt, that my results would be positive, too.

They came back negative.

It was a tumultuous time. Horse and Carolyn fought acrimoniously and then split up. In the wider social group, people started drawing lines. Very few of us had regular incomes then and heroin was expensive. A lot of people stole to support their habit and, being mostly soft, middle class people with little natural aptitude for profitable non-white collar crime, they usually stole from friends and family, the easiest targets. It was, to use an expression, fucked up. People who were previously best friends stopped speaking to each other. Some former friends were no longer welcome in the extended circle, particularly the handful prone to stealing cash and valuable objects to pay for their habits. A few people left the scene entirely, often moving out of state. A handful joined ashrams or traveled abroad. One, after being convicted of armed robbery, was confined to Odyssey House, one of the nastier rehab/boot camps available for junkies.

In the pre-AZT era, Horse and Carolyn’s health declined, particularly rapidly in Carolyn’s case. Even though she more or less went into seclusion and avoided social contact in the last year of her life, I made a special effort to seek her out. To me, she looked and sounded exactly the same as she always had, with the single exception that her skin had turned, quite literally, as white as a piece of paper. She was a strong woman and had seemed to accept that she was going to die. She thanked me for visiting her and said that given that I was living far away, it was probably the last time we’d meet. I never saw Horse again. They are both dead now.

Feeling bruised and saddened by the impact of drugs on the people I knew, I was walking along Gertrude Street, in those days still an inner city working class district with a large Koori and new migrant population. In a shop front window, I saw a sign saying “VIVAIDS: Needle exchange and IV drug user counseling service.”

That was almost thirty years ago, now. It’s hard to explain how shocking and outrageous the idea of a service to provide clean needles and advice, a service actually run, not by the token “ex-junkie” common in many counseling services, but by a group of people that included a gay sex worker, several IV drug users, and a few who were HIV+. Several activists from the Anarchist group book shop across the road were also heavily involved.

It was the first facility specifically intended for drug users. Yolande, a tough, feisty and inspirational individual had fought tooth and nails to secure funding and support to establish the center at time when perhaps a handful of such centers existed around the world, perhaps in Amsterdam or similar places. Yolande also fought very hard against the dominant paradigm for facilities for IV drug users at the time, which insisted that the ultimate goal of any such facility should be to get the user to stop using. If someone else put up a poster that showed a drug user in a negative light, she’d simply rip it off the wall. Information about rehab programs was available – but under the counter and only if someone specifically asked. Yolande insisted that VIVAIDS shouldn’t appear to be pushing abstinence as the only solution to the prevention of AIDS – “And besides, they can get that information anywhere!” Her only serious restriction was that visitors were strictly forbidden from injecting on-site, due to the legal problems that might cause.

Again, it’s hard to explain how shocking that seemed in Melbourne in the 1980’s. At the time, it wasn’t even clear whether running a needle exchange – or even being in possession of a clean syringe – was entirely legal. A big concern was that police would simply arrest clients as they walked in and out the door. I’m happy to say that never happened. I’m also happy to say that the model established by Yolande has been replicated all over the Australia, where it is now no longer controversial. Thirty years later, VIVAIDS itself still exists and still strives to fulfill its original function.

Thanks, Yolande, for all the good work you did. I’m proud to have known you. You were a good friend.

***

Fast forward thirty years to Jakarta. Well, not really, because Jakarta has been caught in something of a time-warp in this area. Admittedly, we’ve come quite a long way since the day when Magic Johnson was refused entry to Indonesia because of his HIV status. With multimillions of dollars now assigned by the major aid agencies, the Indonesian government now supports a great swathe of programs and projects to manage and prevent HIV and AIDS, some of which are quite well designed. If Magic is still alive, he could probably now visit as a highly paid guest speaker for the organizations that manage these programs.

But there is still some way to go.

I have a friend whom I meet occasionally in the cheap backpacker bars on Jalan Jaksa. I should be careful about identifying him, because he leads something of a double life. By night, he is a flamboyant gay party animal, frequently found at the Stadium until the early hours. By day, he is a responsible administrator at an inner city public health center. So let’s call him “Ricco”.

One day, Ricco came up to me, looking a bit confused and upset. Ricco is a good friend and something of an older brother to many of the sex workers who trade in the bars on Jaksa. He told me about Inul, one of the sex workers who is not just HIV positive, but who probably has a full blown case of AIDS. Certainly, she had some horribly disfiguring herpes and other sores on her face, as well as a chronic hacking cough. She was a bit of a sad case: barely literate, not very bright, little sense of self-preservation, no close friends or family in Jakarta, no prospects of any kind. But even in her fairly dire condition, she was still working – Ricco said she mainly served Nigerian clients in the gangs and laneways off Jaksa. Inul was being ostracized by many of the other women in the bars, many of whom accused her of spreading a disease to clients who could ultimately infect them. She was kicked out of her boarding house and was told that she wasn’t to show her face on Jaksa again. Ricco knew that I’d previously done some work at UNICEF and somehow decided that this meant that I had access to health facilities that could help Inul.

Of course, I don’t have any such access and I’m not usually such a good Samaritan that I spend a lot of time trying to save complete strangers. Still, I’d heard of an organization called Spiritia, an organization for people living with HIV and AIDS established on the basis of self-help and self-empowerment that actively encourages the formation of smaller, local self-help groups across Indonesia. I wasn’t sure that I wanted to be involved with Inul’s case, but I thought if I could make a few phone calls to see what facilities were available, I’d be happy to do so.

It was quite depressing. I contacted David, an activist at Spirita, to see if there was anything like a hospice where Inul could stay and be looked after before she died. While he was sympathetic and helpful, he bluntly told me that the organization had so many cases to deal with, they simply did not have the resources to provide much for someone like Inul, who resisted taking medication and who was not prepared to help herself. In the whole of Indonesia, he said, there were no hospices specifically intended for poor people dying of AIDS. If we could get her into the Spiritia office, there would be people there who could talk to her. Perhaps, he said, they could find her a boarding house where people might be sympathetic, but that was it.

Ricco never managed to get her into the office. Inul got sicker and sicker until, one day, like a mangy sick cat, she just stopped showing up.

When I was commissioned to write Invisible People, I remembered my conversation with David. I knew that if we were going to do a story about people with HIV and AIDS in Indonesia, we should concentrate on Papua, where the rate of infection is more than ten times the national average. So I called David again and asked him if he could suggest a self-help group active in Papua. He suggested that I contact Yudhi from Sorong Sehati, which I did.

I was extremely impressed with Yudhi, the articulate, dedicated founder of Sorong Sehati. A former IV drug user, he’d been rejected and ostracized by his family when they had found out about his HIV status. He had worked as a health worker providing information at schools and other venues, one of the few health workers both HIV+ and open about his status.

However, I wasn’t entirely happy with the chapter on HIV and AIDS in Invisible People. For one thing, we focused entirely on the group in Sorong, one of Papua’s major cities – and therefore entirely unrepresentative of the environment in which most Papuans live. Like most of the major cities on the coasts of Papua, Sorong is largely populated by migrants from elsewhere in Indonesia and has far better health, educational and every other kind of facility that you can think of than the interior. If I had the opportunity again, I would definitely push harder to go up into the highlands, around Wamena and the Baliem valley, where medical services are limited or non-existent and where knowledge and awareness of HIV and AIDS is appallingly low.

It’s actually quite difficult for foreigners involved in the development sector to get into the interior. For a start, with few roads and limited air flights, it’s logistically difficult. And then, police permits are required. Finally, many development organizations are frankly scared about letting their consultants and employees travel inland, due to security issues mainly associated with Papua’s secessionist movement and the military response to this movement. Too often, if an employee of a development organization, particularly a foreigner, goes to Papua, they won’t get much further than a four star hotel a comfortable hour’s drive from the nearest airport.

We were meant to be writing about “invisible people”: I still think that when you are looking at people living with HIV and AIDS, the most “invisible” people are not those in the towns, but out in the villages. Out there, people can get sick and die without even having heard of the existence of the disease that killed them. Even when remote villagers are diagnosed, they often live a few days’ walk from the nearest medical facility, and maybe much further from one that can actually provide the appropriate medical assistance.

If I get a chance, I want to go back to Papua and get out to the remote villages to see what life is like out there.

There is another reason that I wasn’t really happy with the chapter on people living with AIDS. In addition to that chapter, I also did several chapters specifically profiling high-risk groups, including sex workers in West Kalimantan; transsexual waria in Madura and Surabaya; and IV drug users in Jakarta. While the profiles on the people from these groups didn’t specifically focus on how they dealt with HIV and AIDS, it was for all of them a part of their lives.

Since all the people in the high risk groups had already spoken at length about HIV and AIDS, was there really a need to include a chapter specifically on “people living with HIV and AIDS”? I’m a little bit concerned that by including one chapter on “normal” people affected by HIV and several others on the ‘high risk groups’ (i.e. junkies, poofs and hookers), we were reinforcing the old idea that some people are innocent victims and others were asking for it, even if we wouldn’t be quite so tasteless as to suggest they were being punished by God.

One of the best books I’ve ever read about AIDS and “the AIDS industry” is The Wisdom of Whores, by Elizabeth Pisani. She describes a bloated, over-funded bureaucracy that loves the idea of the innocent victim, the good wife and mother with her baby infected by her bastard whore-mongering husband. This is the kind of image that generates public concern and sympathy, which in turn ensures that governments and donor agencies keep on pouring money into the machine. Unfortunately, she says, this means that much of the money is directed towards programs that don’t really focus on the more epidemiologically significant high risk groups.

Elizabeth argues well, and I’m almost convinced. Still, I wonder about drawing sharp lines like that. Just as most of the sex workers in Kalimantan probably spent more of their hours each day being normal mothers and housewives than they did serving clients, quite a number of the normal housewives in Papua did a little bit of sex work on the side. I mentioned that to Elizabeth once, and she said, logically enough, that it is not an efficient use of resources to spend a lot of money educating a woman who sells sexual services four times a month if that means taking the money away from women who sell sexual services six times a night. Simple arithmatic.

On the other hand, if the money bags only fund programs for the high risk groups, then everyone else goes back to thinking AIDS is a revolting disease that only affects deviants. Then, yet again, the donor agencies are spending something in the order of ten billion dollars a year. That’s quite a lot of money, if 99 percent of it is being allocated to convince the general public that the other one percent should be spent effectively on the people who most need it. Perhaps there are other, more cost effective ways of convincing them, but we’ll probably never know. Once you’ve established a multi-billion dollar industry, it’s hard to pack it up and start again.

A more realistic goal is probably to work to increase the proportion spent on the high risk groups and to strongly oppose programs that are positively destructive, such as faith-based abstinence programs. Honestly, as a hired gun freelance writer, I’d rather do an annual report for a cigarette company than to write anything good about that kind of program. It’s bad enough wasting money, but when you spend it on programs that actively vilify people who don’t conform to normative moral standards, I think you have to draw the line.

First do no harm.

2 Responses to “AIDS: Whose virus is this, anyway?”

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  1. Andrew says:

    I love this article. Just as the title of the magazine you wrote for says, “invisible people”, I’ve never seen or heard of a person in my community with AIDs. I just don’t know what it is to the people who have it.

    The image of the sex worker coming back every night a little sicker until one day she just didn’t, is especially poignant.

    I’ve learnt a few things today I think :)

  2. SireneB says:

    Great article. Thought-provoking.

    Also had first hand experience with AIDs, my then-boyfriend was diagnosed in the early 1980′s and died in 1992.

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