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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