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.
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.
Labels: corruption, HIV Prevention, hiv-testing, HIV/AIDS, lobbying, waste
Wednesday, February 17, 2010
Enough with the Urgent Demands to Maintain the Status Quo
Over the past week, AIDS organizations and workers around the world have been experiencing wake-up calls. Out of Uganda was the article in The Wall Street Journal that the rate of people getting tested is slowing down because treatment programs are less available and, without that incentive, what’s the point of getting tested? In Washington DC, GOP House members are calling for a more thorough vetting of federal dollars spent on AIDS programs in the District in light of the report in the Washington Post last fall about waste and corruption. No doubt, these House members are looking to score political points, and shame on Democrats for not also calling for greater program accountability thus allowing this to degrade into another partisan issue. The predictable reaction among AIDS advocates in DC has been silence or added layers of blame and denial, stating that the corruption occurred under the Bush Administration (forgetting the fact that the Bush Administration did not commit the corrupt acts, at least in this case). Then, this morning I received an e-mail from the AIDS Foundation of Chicago about the Illinois fiscal crisis. The writer of the e-mail stated that this is “the most serious state fiscal crisis (he has) seen in … 12 years”. You would think that all of these, clearly illustrating that the challenges are not restricted to any one area, would lead to urgent calls for community action. They are all indications that we are on a slippery slope to losing many of the gains that had been made in the fight against AIDS, and perhaps it is time to shake everything up so we can get back on a positive trajectory. But no. Instead, the calls to action are to sign petitions and lobby to get more dollars back into the same system.
Personally, I cannot get excited about any of this. Waste and corruption has been rampant in AIDS work for well-over a decade pretty much throughout the world as organizations have stubbornly refused to commit to getting ahead of the HIV-curve. For almost a decade now, I have been convinced that a vital piece to stopping the spread of HIV is that everyone – E-V-E-R-Y-O-N-E – knows his/her status through testing. The constant message I have said is that testing includes education and compassion, and that this is a community responsibility, not a government-funded program. Routinely, people have responded by twisting and contorting almost everything in order to keep HIV-testing and education the purview of “AIDS Inc.”, with comments like people can’t be trusted to do this right, or people will find out they are positive and then kill themselves. Data does not support this, but the very same people that demand factual, proven-effective education create myths about testing with no facts to back them up and no desire to test the theories.
I have seen the waste first-hand. I have not seen, perhaps, the blatant corruption of stealing and pilfering as has been reported in places such as Washington, DC, but I was not surprised by it, either. I have seen the corruption of greed and the waste of unnecessary expenditures, “needs assessments” and other kinds of delay-tactics that take time and money but by the time they lead to action, we are even further behind the curve. Some examples:
• Executive Directors blithely saying they only come to “partnership” meetings because they get money from the partnership and not being challenged to really collaborate.
• I have been recruited to be a participant in HIV-education presentations in order to meet a monthly funding quota, not because I needed the education.
• In the mid-1990’s, I was kept as an active caseload while not receiving any services, effectively being a statistic for funding.
• When I ran an AIDS Housing organization, the greatest pressure was to keep the apartments full regardless of whether the prospective resident was appropriate for that kind of housing. I resisted often. During this same time, many residents received travel vouchers to get cab rides for MD appointments at over $100 roundtrip. Public transportation could do it for under $15. Clients were given this independent of any physical-needs consideration; it was simply because the funds were available.
• One year in Kenya, I was told by a British worker that the US dollars are plentiful, but not very effective if spending must be done by the guidelines (Abstinence-only education), as they do not meet the community’s reality.
• I co-chaired a housing needs assessment in Chicago from 2000 to 2002. Despite my concerns about the waste of time and money put into the process (including bringing in out-of-state consultants), the project went on. The report provided no new information. The ultimate was this: the overwhelming majority of people with HIV/AIDS did not want AIDS-segregated housing. This was ignored because an AIDS housing organization had already made plans to build one. The ground had not been broken yet, but they proceeded anyway.
• As funding started to decrease, already-funded programs were forced to collaborate more. Prospective applications for grants are now often restricted to previously-funded programs, thereby decreasing the opportunities for truly innovative new ideas to emerge.
• Most recently, I have been participating on a committee to develop community-wide test and treat programs (under the purview of NIH and CDC). It is an expensive proposition that does not alter the current system at all, relying on even more funds in the future to be successful.
Throughout much of the 1990’s and into the new century, the mantra was “spend it or lose it”. I remember thinking to myself that the day will come when it will be “spend it AND lose it”. I always felt strongly that it is better to spend wisely and return funds if necessary rather than foster dependency on an impermanent system. It seems like that day has finally come. Sadly, what seems inevitable is that people all over the world – including in Illinois – with HIV are going to increasingly not be able to access funded treatment programs, HIV-prevention programs are going to be reaching less people, and HIV-testing will be increasingly limited to the highest-risk groups, always the most difficult to cherry-pick out of the fabric of society.
Instead of any innovative calls for community action, we are left with the same players putting out calls for people to advocate for the government to come up with more funds for these very same systems that, when the money was flowing, had no qualms about spending wildly and often unnecessarily. From city halls, to state capitals, to Washington, DC, people are converging (at no cheap cost) to learn how to lobby for dollars for the status-quo system both here in the US and in Africa, and they will be lobbying to systems that are flat broke and not going to be sympathetic.
If our AIDS leaders can come up with nothing better than “we need more dollars”, I say “enough”. It's been over two decades since AIDS, Inc. has come up with anything new or innovative, despite the fact that technological development now offers effective treatments, and we have the capacity to self-administer HIV-screening with results in 5 minutes. It’s been 8 years since I met with Senator Durbin and asked him to help us lead a campaign to have every resident in Illinois know his/her status. His response: “We can’t afford to do that”. I said at the time, "we can't afford not to do it", and every day, the cost goes up. Since then, I’ve kept to the same message – a message that the CDC now says is vital to stopping the spread of HIV. I know people get tired of hearing it but, just as over the past week many of us got tired of shoveling snow, the task remains, and won’t go away simply because we are tired of it or hearing about it. It will only go away when we take action. It is a simple fact – when we all know our status, our collective education as a society will rise dramatically, and as individuals armed with this education, we can be effective agents for taking this forward. The technology exists that we could do this on the cheap. We just need to change the policies around disbursement of self-administered HIV-screening and stop scaring people with the belief that they need "AIDS, Inc." to survive, and we can start moving.
So, until these urgent calls for action and demands for more funds start to include a strong message for community action to get everyone to know his or her status, and include as a part of their gatherings opportunities for people to learn how to administer and talk to people about these tests, I’m out. Enough chasing the virus. Too much money has been wasted, and too much time has passed. It’s time for the current system to collapse, and let something else emerge.
Over the past week, AIDS organizations and workers around the world have been experiencing wake-up calls. Out of Uganda was the article in The Wall Street Journal that the rate of people getting tested is slowing down because treatment programs are less available and, without that incentive, what’s the point of getting tested? In Washington DC, GOP House members are calling for a more thorough vetting of federal dollars spent on AIDS programs in the District in light of the report in the Washington Post last fall about waste and corruption. No doubt, these House members are looking to score political points, and shame on Democrats for not also calling for greater program accountability thus allowing this to degrade into another partisan issue. The predictable reaction among AIDS advocates in DC has been silence or added layers of blame and denial, stating that the corruption occurred under the Bush Administration (forgetting the fact that the Bush Administration did not commit the corrupt acts, at least in this case). Then, this morning I received an e-mail from the AIDS Foundation of Chicago about the Illinois fiscal crisis. The writer of the e-mail stated that this is “the most serious state fiscal crisis (he has) seen in … 12 years”. You would think that all of these, clearly illustrating that the challenges are not restricted to any one area, would lead to urgent calls for community action. They are all indications that we are on a slippery slope to losing many of the gains that had been made in the fight against AIDS, and perhaps it is time to shake everything up so we can get back on a positive trajectory. But no. Instead, the calls to action are to sign petitions and lobby to get more dollars back into the same system.
Personally, I cannot get excited about any of this. Waste and corruption has been rampant in AIDS work for well-over a decade pretty much throughout the world as organizations have stubbornly refused to commit to getting ahead of the HIV-curve. For almost a decade now, I have been convinced that a vital piece to stopping the spread of HIV is that everyone – E-V-E-R-Y-O-N-E – knows his/her status through testing. The constant message I have said is that testing includes education and compassion, and that this is a community responsibility, not a government-funded program. Routinely, people have responded by twisting and contorting almost everything in order to keep HIV-testing and education the purview of “AIDS Inc.”, with comments like people can’t be trusted to do this right, or people will find out they are positive and then kill themselves. Data does not support this, but the very same people that demand factual, proven-effective education create myths about testing with no facts to back them up and no desire to test the theories.
I have seen the waste first-hand. I have not seen, perhaps, the blatant corruption of stealing and pilfering as has been reported in places such as Washington, DC, but I was not surprised by it, either. I have seen the corruption of greed and the waste of unnecessary expenditures, “needs assessments” and other kinds of delay-tactics that take time and money but by the time they lead to action, we are even further behind the curve. Some examples:
• Executive Directors blithely saying they only come to “partnership” meetings because they get money from the partnership and not being challenged to really collaborate.
• I have been recruited to be a participant in HIV-education presentations in order to meet a monthly funding quota, not because I needed the education.
• In the mid-1990’s, I was kept as an active caseload while not receiving any services, effectively being a statistic for funding.
• When I ran an AIDS Housing organization, the greatest pressure was to keep the apartments full regardless of whether the prospective resident was appropriate for that kind of housing. I resisted often. During this same time, many residents received travel vouchers to get cab rides for MD appointments at over $100 roundtrip. Public transportation could do it for under $15. Clients were given this independent of any physical-needs consideration; it was simply because the funds were available.
• One year in Kenya, I was told by a British worker that the US dollars are plentiful, but not very effective if spending must be done by the guidelines (Abstinence-only education), as they do not meet the community’s reality.
• I co-chaired a housing needs assessment in Chicago from 2000 to 2002. Despite my concerns about the waste of time and money put into the process (including bringing in out-of-state consultants), the project went on. The report provided no new information. The ultimate was this: the overwhelming majority of people with HIV/AIDS did not want AIDS-segregated housing. This was ignored because an AIDS housing organization had already made plans to build one. The ground had not been broken yet, but they proceeded anyway.
• As funding started to decrease, already-funded programs were forced to collaborate more. Prospective applications for grants are now often restricted to previously-funded programs, thereby decreasing the opportunities for truly innovative new ideas to emerge.
• Most recently, I have been participating on a committee to develop community-wide test and treat programs (under the purview of NIH and CDC). It is an expensive proposition that does not alter the current system at all, relying on even more funds in the future to be successful.
Throughout much of the 1990’s and into the new century, the mantra was “spend it or lose it”. I remember thinking to myself that the day will come when it will be “spend it AND lose it”. I always felt strongly that it is better to spend wisely and return funds if necessary rather than foster dependency on an impermanent system. It seems like that day has finally come. Sadly, what seems inevitable is that people all over the world – including in Illinois – with HIV are going to increasingly not be able to access funded treatment programs, HIV-prevention programs are going to be reaching less people, and HIV-testing will be increasingly limited to the highest-risk groups, always the most difficult to cherry-pick out of the fabric of society.
Instead of any innovative calls for community action, we are left with the same players putting out calls for people to advocate for the government to come up with more funds for these very same systems that, when the money was flowing, had no qualms about spending wildly and often unnecessarily. From city halls, to state capitals, to Washington, DC, people are converging (at no cheap cost) to learn how to lobby for dollars for the status-quo system both here in the US and in Africa, and they will be lobbying to systems that are flat broke and not going to be sympathetic.
If our AIDS leaders can come up with nothing better than “we need more dollars”, I say “enough”. It's been over two decades since AIDS, Inc. has come up with anything new or innovative, despite the fact that technological development now offers effective treatments, and we have the capacity to self-administer HIV-screening with results in 5 minutes. It’s been 8 years since I met with Senator Durbin and asked him to help us lead a campaign to have every resident in Illinois know his/her status. His response: “We can’t afford to do that”. I said at the time, "we can't afford not to do it", and every day, the cost goes up. Since then, I’ve kept to the same message – a message that the CDC now says is vital to stopping the spread of HIV. I know people get tired of hearing it but, just as over the past week many of us got tired of shoveling snow, the task remains, and won’t go away simply because we are tired of it or hearing about it. It will only go away when we take action. It is a simple fact – when we all know our status, our collective education as a society will rise dramatically, and as individuals armed with this education, we can be effective agents for taking this forward. The technology exists that we could do this on the cheap. We just need to change the policies around disbursement of self-administered HIV-screening and stop scaring people with the belief that they need "AIDS, Inc." to survive, and we can start moving.
So, until these urgent calls for action and demands for more funds start to include a strong message for community action to get everyone to know his or her status, and include as a part of their gatherings opportunities for people to learn how to administer and talk to people about these tests, I’m out. Enough chasing the virus. Too much money has been wasted, and too much time has passed. It’s time for the current system to collapse, and let something else emerge.
Labels: corruption, greed, hiv-testing, HIV/AIDS, waste
