Saturday, March 13, 2010

Last month, an Indianapolis man was arrested for knowingly spreading HIV. (Here's a link to the story:

No doubt, this man needs to be held responsible for his actions, but this story also raises questions for me, such as:
1. The sex with women was not coerced. To what extent are the women responsible for not taking measures to protect themselves?
2. If some of these women turn out to be HIV+, is it certain that this man gave them HIV if they have also been sexually active with other men?
3. Are we penalizing people who know they have HIV and acting irresponsibly, but letting those who do not knowingly spread HIV (meaning those who are undiagnosed) off the hook? How does this impact testing efforts?
4. If all participants were men, would the legal action be taken?

Your thoughts? You can post them here or on our website (

Wednesday, March 10, 2010

The De-Institutionalization of AIDS
Part 2:
The Lobby and Fear Game

For most of us, we have had this experience: our emotions and passions for a cause or a belief are sparked. We connect to an organization that represents, works for or advocates for that cause. In modern times, we sign on to this organization, receiving e-mails, updates and “calls to action”. Often these calls to action are for money or power. The money call is usually “give us your money so we can speak for you." The power call is usually “Meet with or call your elected official. Here’s the topic and here’s the script”. This process has been and is applied from wide-ranging groups such as the Tea Party Movement to MoveOn, and everything in between. Religious groups such as Focus on the Family have used these tactics, as have groups like Human Rights Campaign.

So what is the problem with all this? Isn’t it true that money is needed to keep services flowing and growing? No doubt money is a vital component of quality services, but this process that we currently have is too much about power and money, and not enough about accountability and truth. It is a process that allows society to "defer to experts" without being asked to think deeply about the issues and complexities - including how our own patterns of consumption and lifestyle might need to change. It is also a process that uses fear as a means to keep people from thinking deeply about the issues at-hand and considering that there might be more going on than meets the eye. It uses this fear to keep people divided, and to separate people from their money. It does not lend itself to understanding and compassion, but more to judgment and blame. Most importantly, it is a means of raising funds to keep the institutions open, but at great cost to the mission of the organization.

HIV/AIDS services have been no exception to this. In fact, I would say that “AIDS, Inc.” has become a master at this. Lobby Days (at state and federal levels) are perhaps some clear examples of this.

Lobby days generally use people with HIV to tell a story of how important the services they receive are. Keep in mind that it was during some of these lobby days, when DC residents were included, that there was a simultaneous misuse of funds happening in DC that was reported on just last fall. These “lobby days” are pretty formulaic; people with HIV/AIDS (called “consumers”) tell their stories, and then the lobbyist gets into the details of a legislation/funding issue.

Here is what does not happen at Lobby Days:
“Consumers” are coached to not bring up anything negative about the services they receive. These days are all about money, not accountability. So the question is: where does the accountability come in? I attended some of these lobby days in DC between 2003-2005 (all costs covered – again more money). These were some of the years of incredible fraud and even theft taking place in Washington DC AIDS services.

“Consumers” are not at all encouraged to consider how we are living our daily lives during these days when we are pleading for funds to underwrite our living expenses (I am using “we” in the broad sense of “consumers” as people with HIV/AIDS). Yet, at these lobby days, I am amazed at the amount of smoking and drinking that takes place among consumers. For two years, my regional team leader could not wait to get back outside to have another smoke. I’m not saying people need to live pure and chaste lives; I am saying that the organizers and leaders of these events - basically representatives of “AIDS, Inc.” – could say at least a few words about how, as we ask for funds to help us meet our living needs, we at least make an effort to live healthier, doing our part to ease the burden. One year, I brought two young men from Wheaton College with me to experience this event in DC. They were both young heterosexual men from Evangelical Christian communities. They were in a clear minority at this lobbying event. They were exceptional in their messages. They were also “hit on” by consumers. One was invited to a sex party. To their credit, both of these young men reflected on what was going on.

It is this kind of reflection that “AIDS, Inc” (or any institutionalized movement, for that matter) finds threatening and would prefer not take place. Generally, the pattern is to take enthusiastic and well-meaning college students, show them just enough of the current problem to get them aligned with what the organization wants, but not enough for them to see that the issues might be more complex or the action options might be more numerous and even less money-dependent. Ideally, bringing “consumers” into the picture helps to complement the experience, but again, consumers are ideal if they often fit the image. Then everyone traipses to state capitals or to DC and tells a story or demands action. This is often supplemented with signature campaigns. All very good, and important, but not necessarily helping society become more informed, more responsible, or more effective in stopping the spread of HIV.

Instead we have many "experts" who can talk about some of the funding and legislative issues related to HIV/AIDS, but not many of them could tell you what the four body fluids that transmit HIV, nor have actually been tested for HIV, so they really have no real-life experience of how the current system works. This lack of knowledge fuels the very stigma and blind-spots that we need to overcome. The most blatant personal example I have of this was when one college student told me that I just don't understand the AIDS pandemic because she had been trained by Student Global AIDS Campaign and the One Campaign, and had been to Zambia. It becomes an "exclusive" rather than an inclusive narrative.

There have been times that I have been the only person with HIV around the table, but told flat-out that a lobby meeting needs to have an activist who has HIV but I don’t qualify because I am not the right gender or color. This is the way it goes – it is a very narrow narrative that is allowed to be told. “AIDS, Inc.” cannot afford for a complex narrative to emerge and have people stay on message.

While all this may sound harsh and heartless, I think it is actually the opposite. This is really about compassion for those in need, encouraging those who can do for themselves to do so, and to do what we can together to decrease the need. A good friend of mine, someone who was near-death in 1995, but got well and returned to work. He has a heart of gold, and has dedicated his life to serving others. He was one of the first residents where I worked who grabbed life by the horns and said “people, it’s time to move on if we are able”, used a term for these lobby days. He said these big organizations bring clients from around the country, coach them to tell their “poor me” story (he actually said “poor, pathetic AIDS story”) so that more money can be garnered. This is a template that has been proven effective all around the world, but is susceptible to misuse and abuse, as we have seen, not just in corruption but in tying in policies such as “Abstinence-only” that really do not advance the collective missions.

How do we break this cycle? The efforts of The Mosaic Initiative have been to continue to show up and speak up as best we can. Most recently, for example, we attended a workshop in Washington DC that brought college students and “consumers” together for what was supposed to be an advocacy training and networking weekend but was instead a “throat-cramming” of more dollars for treatment in Africa. We were the constant voice to raise awareness to HIV-testing as vital to stopping the spread of HIV, and to the fact that the current system is wasteful in limiting testing options. There were those who were interested in learning more. So sometimes the best we can do is to stay informed and stubbornly show up at places where people are being indoctrinated in the “money/power” paradigm, and plant seeds for deeper thinking.

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Friday, March 05, 2010

The De-Institutionalization of HIV/AIDS
Part 1

1996 was a critical year. I had dealt with my own personal crisis of finding out in 1992 I had fairly advanced HIV (my t-cells were around 200 at initial diagnosis). I had come to grips the "fact" that I would most likely not see my 40th birthday in 2001. I had finally gotten a full-time job working in HIV/AIDS services after spending a few years volunteering in various capacities while biding my time in more arduous social service jobs. I was going to be doing counseling at a holistic health clinic for people with HIV/AIDS. I had also been a client at this clinic. The pay was not great, but I didn’t care. I was doing something fulfilling – providing support for people who were on a fast-track to death, as I was. As a group (as people living with HIV, and as organizations committed to supporting people with HIV), we were resigned to a fate where HIV=death. Just two years before, the news about HIV-treatment was not good. Treatments were minimally effective and highly toxic. Weekly gay newspapers were full of obituaries of young men. Increasingly at this clinic, the demographic of clients also included people of color, especially black women. It was a real community of love for those of us who had only that to hold onto.

Then, the world changed. Protease Inhibitors were introduced, and I remember one of my first thoughts was “Uh, Oh”. If these new medications were as good as promised, the landscape had just dramatically shifted. I remember running support groups, and seeing people almost magically becoming healthy – in one case literally rising from his wheelchair. Andrew Sullivan, senior editor for The New Republic at that time, wrote a cover story for the New York Times Magazine called “When Plagues End”. He observed how skeptics were challenged to hold on to their skepticism in the face of such news, and how the big shift was that AIDS was no longer a death sentence, but a chronic condition (the entire article can be seen on-line at Sullivan took a beating over time from the skeptics. He was proved wrong, as AIDS remained a permanent fixture in the world. But was he really wrong? I think he was right, but he underestimated the power of the skeptics – many of whom had a career investment in him being wrong.

"Every great cause begins as a movement, becomes a business, and eventually degenerates into a racket” - Pat Buchanan, May 2008

So here we are, 2010. HIV is still vibrantly with us. We stand on the verge of another turning point. This time, the turning point is funds are drying up for treatment, and waiting lists are starting to emerge and grow. Despite advancements in treatment and testing technology, and significant advancements in communications (cell-phones, internet, texting, social networking), we continue to lose. But, despite the pleas that are heard for more money, none of this is a crisis. It is the course we have been on and as a society – a global society – we have no one to blame for this but ourselves. To be sure, “AIDS, Inc” has done little to encourage us to truly be different, or to seriously think about what should be done. From the beginning of the pandemic to the present day, we have not been encouraged to be reflective, only reactive and to obey the orders of the Institutions of AIDS. These include:
• “Spend it or lose it” policies that have resulted in keeping case loads full (this is not simply a problem is AIDS services, but of our whole sick-care approach). Since 2000, the real message should have been “Spend it and lose it, so spend wisely”.
• AIDS = poverty, women and children in Africa. This is a favorite among the evangelical world, as many can deny that HIV is primarily a sexually-transmitted disease. Thanks, Bono, for that one.
• Advocacy groups hold workshops (often made up of a mix of energized college students, people living with HIV), and immerse them in information about what to say and what to do. I even heard at one such training that people receiving HIV-services were actually told not to mention any complaints he/she might have about services. The message is never about systemic change, just money.
• Countless people talk about HIV/AIDS in countless arenas without covering and in many cases even knowing the basic (such as the four body fluids that can spread HIV).
• The Gay/HIV organizations do not speak at all to the fact that anal sex is the easiest means of sexually transmitting HIV. This is not a judgment, just a fact.
• More money, but maintain the cultural status quo.
• When it comes to HIV-testing, you have nothing to fear but you really NEED Counseling. The kicker is that the training to be a counselor is only three days, certainly not enough time if giving one an HIV+ diagnosis is so devastating.

On the surface, these all may make sense. But upon reflection, they are not going to get the job done or, more accurately, based on where we are now, they certainly haven’t gotten the job done. Given that state and national governments throughout the world are simply running out of funds (in Illinois, for example, the entire annual state budget is going to be spent by the end of the 6th month), we are once again at a turning point.

Crisis – a crucial or decisive point or situation; a turning point; a stage in a sequence of events at which the trend of all future events, esp. for better or for worse, is determined.

This time, the turning point is not the result of a new condition such as when HIV first emerged. The word “crisis” will be thrown about as if this was unforeseen, but this turning point has been long-coming, ever since “AIDS, Inc.” (this encompasses not just organizations, but the collective groupthink that pervades much of our global community) did not make the adjustments necessary after the second HIV/AIDS crisis – the introduction of protease inhibitors as effective treatment. That was a major turning point that, partnered with technology that allows for all people to self-administer an HIV-test (but remains unavailable to the general public) should have greatly altered our course. Unfortunately, despite so many accolades to people like Bush, Bono, Gates, Clinton, and the countless local, regional and global people and organizations who have played along, we have remained on the same course of chasing the virus – always remaining a few years behind.

What we need to do now is to take time to reflect while also taking action. In a very uncomfortable way, the current financial crisis may make this work easier. In his most recent book In Praise of Doubt, sociologist Peter Berger and philosopher Anton Zijderveld write that “a society’s taken-for-granted programs of action are called ‘institutions’…Individuals follow the institutional programs automatically, without having to stop and reflect” (pg. 15). Many of these institutions – public and private – are drastically reducing and eliminating programs, with more to come. But rather than fall into chaos, I would like to propose that through reflection – not lengthy reflection, but a few minutes of reflection – we can see that we have many choices at our finger tips and that, through these choices, we may actually be able to do some things more effectively. Our collective pluralist voices, rather than the singular voice of institutions, might be our saving grace.

Over the next few weeks, I will be writing some reflective pieces on what the institutional approaches have done and trained us to believe, and how we can help de-institutionalize some of the tasks and explore and create new ways of moving forward. There are no quick fixes, or easy answers. But we can do much to avoid the chaos as we come together.

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