Enough with Urgent Calls for 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.

Recent Lessons in Humility

“The life that intends to be wholly obedient, wholly submissive, wholly listening, is astonishing in its completeness. Its joys are ravishing, its peace profound, its humility the deepest, its power world-shaking, its love enveloping, its simplicity that of a trusting child.” - Thomas Kelley

“What does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?” - Micah 6:8

During the past week, I have thought a lot about humility and what it means, because in the last week, several friends have canceled prearranged plans due to either snow or personal emergencies. None of this has bothered me. Life happens, yeah some of the plan changes threw off my schedule a little, but all of the cancellations actually gave me more time to breathe, so they were gifts in disguise.

One friend has repeatedly apologized for her not showing up at an event that we planned together. She had let me know before the event, so I knew about it as soon as she knew she couldn't make it. I have been in her shoes several times feeling like I have let people down when stuff happen to me. But life happens no matter if my calendar had something else planned.

Then this past weekend, a major snowstorm hit DC hard. It snowed straight for more than 24 hours and dumped more than two feet of snow. I was supposed to attend a retreat this weekend, but it was canceled the day before due to the weather forecast. One of the organizers was upset at this; a feeling which I totally understand. Similar things have happen to me and I have felt that same feeling of being upset that I just spent so much time planning something that will never happen and I have felt defeated like I had spent all that time for nothing.

Now I see all of these times during the past week and beyond as ways to keep myself humble, because it just reminds me that no matter how much I plan or try to control my life, something bigger than me is always in control. I believe that God has plans for me and God will reveal them to me little by little. Living on God's time is not easy and being humble is not always simple. It requires putting aside my ego and fully submitting to a greater power. When I have, amazing things have happen, like finding my dream job. Thomas Kelly's quote resonates with my few experiences when I obeyed and submitted. I have felt more alive during these times, because I had been fully present during these times.

Part of the weekend, I was unexpectedly snowed in at a friend's house a couple miles away. I had wanted to weather the storm in my house where I had stocked up on food, but the snow came down faster than I had thought and I was stuck. That night, as I was snowed in, I watched the Bill Maher's documentary, Religulous that my friends had from Netflix. For much of the film, he mocks organized religion. Several times he asks hard questions and the interviewee cannot answer, such as Couldn't the writers of The Bible made everything up? He uses this as proof that organized religion is a clutch for the week-minded.

As I watched the film, I felt like I had no answers to many of the questions he asked. I started to think, maybe I am weak in my faith and Bill has a good point. But I realized faith isn't about answering questions, but about believing in something far greater than myself. I have known God experientially, not through answering questions.

Part of humility for me is knowing that I do not always have quick and ready answers to questions about my faith and I should not pretend that I do. I continue to ask myself many hard questions daily: Was it in God's plans to have a snow storm this weekend or does God control the weather really? Or why did the earthquake hit Haiti and kill 100,000 people while I am living safely in a warm house in the richest country with a nice job? Are these events really part of God's plans? Like I said before, I do not know any answers to these hard questions and I won't attempt to answer these questions, but what I do know is that I have felt God working in my life before and I know that God is still working in my life, so I will continue everyday trying, as Micah suggested thousands years ago, 'to do justice, and to love kindness, and to walk humbly with your God'.

When was the last time we tackled a major problem?

This past Sunday in The New York Times, Frank Rich wrote a column called “The State of the Union is Comatose”. He cited historian Alan Brinkley’s observation “that we will soon enter the fourth decade in which Congress — and therefore government as a whole — has failed to deal with any major national problem, from infrastructure to education.” This statement really jarred me, and has me thinking that it’s not just government that has failed to deal with any major national problem in a proactive manner, its our whole society.

I have been spending the past few months working with colleagues at William Penn House and Washington Quaker Workcamps on ways to move Workcamps into the 21st century. In doing this, I have been doing some reading about the history of Quaker Workcamps and Service Learning. The origins of both of these can be traced back to the early 1900’s, and both grew out of the pacifist movement. At the time, given the new technologies of transportation and communication (as well as of warfare), they were very innovative. But now, a century later we continue to experience wars, environmental and economic violence and injustice that include poverty, hunger, homelessness, and preventable disease.

At the same time, I have been continuing my efforts to being a part of stopping the spread of HIV. This week has been interesting on this front as well. There was an article in the Wall Street Journal last week about the pace of funding for HIV-treatment in Africa is falling far behind the needs. In Illinois, the word has come down that prevention programs are being eliminated so that current dollars can be allocated to treatment programs. I have continued to be a part of a consulting group for the CDC and NIH to develop protocols for community-wide test-and-treat of HIV, and continue to be amazed at the slow pace of implementation as HIV enters, ironically, its 4th decade as well. Meanwhile, waiting lists are starting to emerge for treatment.

Meanwhile, the earthquake in Haiti has awakened the general public to the fact that there is this poor nation with a history of corruption and neglect in our hemisphere of the world. As we have seen with tsunamis, AIDS, and hurricanes, these events are not what seem to shock us, but the devastation these things have on the poor that really wake us up. In general, this is where Workcamps and many Service Learning programs, as well as faith –based mission trips, tend to go – places where the devastation is clear, and there are some quick fixes that require short-term sacrifices, but not transformative changes in how one lives his/her life. They have the potential to ingrain in people that we should always be chasing the devastation, not doing the hard work to minimize the harm of the next one – whether it is disease prevention, or addressing the despair and injustices that are the fertile ground for natural and man-made disasters to do their worst.

The big question I have with all of this rattling around the brain is: when was the last time social services/social justice movements have tackled anything new or tackled things in new, innovative ways. We for the most part have become a society that works at the margins – we will rise somewhat to the occasion when people have been devastated by a disaster, and we will advocate/blame the government for doing the rest (such as not giving enough money). These are just tweaking the societal system that needs a major overhaul. If ever there were a wake-up call for community action that is responsibility-driven, it is now. But I think the harsh reality is that social services has become an industrial complex as much as the military has, and we have become too complacent and dependent on these institutions to do our work. How else to explain that people cannot fathom spending $10 for an HIV-test as part of a “greater good” effort.

No doubt that technological advances have carried their weight. We have cars that are lighter, get more miles per gallon than ever. We have communication systems that make connecting easier than ever. We have had advances in medical testing and treatment. Unfortunately we often use these technologies to make our life easier and more of the same. When was the last time you heard someone talk about how their hybrid car has made them more conscious about driving, and they are actually driving less and walking more?

Another reality is that I am not sure Workcamps/Service Learning has had a new, innovative idea to breaking the cycles of violence and injustice. But with a century of being under our belts, perhaps it’s time; in fact, there is no better time than now. We have the means to connect with others, to share ideas, and to have voices heard far more than ever before. I know that here at William Penn House, and in conversations with folks in the community, we have started to really consider what this might look like, including that service is much more than physical labor; it’s community-building in a way that the health of the community comes before the needs of the individual, and is accomplished with community members as equal partners, not volunteers/recipients.

I can say the same for HIV/AIDS services: outside of technological advances, when was the last innovative thing created? The same funding boxes for the most part are there, and there is an institutional rigidity to maintain turf. But with the cuts in prevention, all of a sudden we in the community are going to need to step up. AIDS organizations will inevitably say we need to advocate for more dollars: I’m not so sure. I think we need to stop advocating so much, and start doing more. I also think that some of the basic testimonies of Quakerism can help lead the way, if we can only get the institutions out of our way.