HIV/AIDS Bodies Series / Tim Barrus & Cinematheque Films, 2011

"our second selves"

Michel SidibÃ, Executive Director of UNAIDS

"This epidemic unfortunately remains an epidemic of women"

[60% of those infected with HIV in 2011 are female; females are also the primary carer-givers within their households and neighbourhoods and thereby are also the dominant group affected by today's HIV pandemic]

Professor Philip Goulder

(Pediatrician & Research Immunologist, HIV Infection & Immune Control Group, University of Oxford)

We watch carefully the people who inspire us, and listen to the stories they tell us; what we learn from them shapes what we understand, how we feel and how we act in the world.

"It's A Woman" by Tim Barrus

Charles Baudelaire, Le Spleen de Paris, 1864

Looking from outside into an open window one never sees as much as when one looks through a closed window. There is nothing more profound, more mysterious, more pregnant, more insidious, more dazzling than a window lighted by a single candle. What one can see out in the sunlight is always less interesting than what goes on behind a windowpane. In that black or luminous square life lives, life dreams, life suffers.

Across the ocean of roofs I can see a middle-aged woman, her face already lined, who is forever bending over something and who never goes out. Out of her face, her dress, and her gestures, out of practically nothing at all, I have made up this woman’s story, or rather legend, and sometimes I tell it to myself and weep.

If it had been an old man I could have made up his just as well.

And I go to bed proud to have lived and to have suffered in someone besides myself.

Perhaps you will say “Are you sure that your story is the real one?” But what does it matter what reality is outside myself, so long as it has helped me to live, to feel that I am, and what I am?

Real Stories

Larry Kramer (Author/ Playwrite - The Normal Heart; Founder, ACT-UP)

A letter from Larry Kramer : PLEASE KNOW

Please know that AIDS is a worldwide plague.

Please know that no country in the world, including this one, especially this one, has ever called it a plague, or acknowledged it as a plague, or dealt with it as a plague.

Please know that there is no cure.

Please know that after all this time the amount of money being spent to find a cure is still miniscule, still almost invisible, still impossible to locate in any national health budget, and still totally uncoordinated.

Please know that here in America case numbers continue to rise in every category. In much of the rest of the world—Russia, India, Southeast Asia, Africa—the numbers of the infected and the dying are so grotesquely high they are rarely acknowledged.

Please know that all efforts at prevention and education continue their unending record of abject failure.

Please know that there is no one in charge of this plague. This is a war for which there is no general and for which there has never been a general. How can you win a war with no one in charge?

Please know that beginning with Ronald Reagan (who would not say the word “AIDS” publicly for seven years), every single president has said nothing and done nothing, or in the case of the current president, says the right things and then doesn’t do them.

Please know that most medications for HIV/AIDS are inhumanly expensive and that government funding for the poor to obtain them is dwindling and often unavailable.

Please know that pharmaceutical companies are among the most evil and greedy nightmares ever loosed on humankind. What “research” they embark upon is calculated only toward finding newer drugs to keep us, just barely, from dying, but not to make us better or, god forbid, cured.

Please know that an awful lot of people have needlessly died and will continue to needlessly die because of any and all of the above.

Please know that the world has suffered at the very least some 75 million infections and 35 million deaths. When the action of the play The Normal Heart begins (in the 80s), there were 41 million. I have never seen such wrongs as this plague, in all its guises, represents, and continues to say about us all. 

Thank you for coming to see our play.http://www.TheNormalHeartBroadway.com

Please know that everything in The Normal Heart happened. These were and are real people who lived and spoke and died, and are presented here as best I could. Several more have died since, including Bruce, whose name was Paul Popham, and Tommy, whose name was Rodger McFarlane and who became my best friend, and Emma, whose name was Dr. Linda Laubenstein. She died after a return bout of polio and another trip to an iron lung. Rodger, after building three gay/AIDS agencies from the ground up, committed suicide in despair. On his deathbed at Memorial, Paul called me (we’d not spoken since our last night in this play) and told me to never stop fighting. Four members of the original cast died as well, including my dear sweet friend Brad Davis, the original Ned, whom I knew from practically the moment he got off the bus from Florida, a shy kid so very intent on becoming a fine actor, which he did.

Samuel Beckett, “Waiting for Godot”

Let us do something, while we have the chance! It is not every day that we are needed. Not indeed that we personally are needed. Others would meet the case equally well, if not better. To all mankind they were addressed, those cries for help still ringing in our ears! But at this place, at this moment of time, all mankind is us, whether we like it or not. Let us make the most of it, before it is too late! Let us represent worthily for one the foul brood to which a cruel fate consigned us! What do you say? It is true that when with folded arms we weigh the pros and cons we are no less a credit to our species. The tiger bounds to the help of his congeners without the least reflexion, or else he slinks away into the depths of the thickets. But that is not the question. What are we doing here, that is the question. And we are blessed in this, that we happen to know the answer. Yes, in the immense confusion one thing alone is clear. We are waiting for Godot to come —

"HURT" by Jan Jordaan

Jan Jordaan (South Africa; Director, Art For Humanity; Partner, Real Stories Gallery)

Real Stories Gallery is inviting us to think about the Universal Declaration of Human Rights and the Convention on the Rights of the Child, and to reach out to each other with our thoughts and ideas through our visual imagery and personal storytelling.  We are being invited to reflect on the  idea of the Missing Article: Everyone has the right to love and to be loved. 

Visual storytelling been harnessed effectively throughout the ages and across cultures as means for us to introduce ourselves and raise lasting awareness; influencing our perceptions and behaviours towards each other.  Poetry and the visual arts are a powerful form of storytelling, for they compel the audience to FEEL; to imagine, to empathize, to care.  Poetry provides us with a glimpse into who we are and who we would like to be.

Having lived as a father, teacher and artist within my community in South Africa for more than sixty years, I feel deeply saddened by the extraordinary HURT being experienced by those around me, whether they happen to be well or ill.  This hurt within the context of today’s HIV/AIDS pandemic flows from cultural and social perceptions and behaviours, and gives rise too often to profound human rights abuses. This, I believe, is a huge wrong doing, whether perpetrated through direct intentional action and/or unintentional complicit silence and acceptance.

Yet, in these moments of tremendous psychological and physical pain and anguish, I have also witnessed the extraordinary compassion gifted by so many, who feel compelled to alleviate the suffering of those around them.  Nearby to my home the Umthombo Street Children's project is one space where my neighbours from near and far, have come together out of a tremendous and shared desire that the children around them HAVE the right to love and to be loved.  It is a partnership, a profound perception and behaviour that leaves all parties deeply affected, and creates a strength to reach out for possibilities. 

The medium of art and storytelling expressed through imagery and poetry provides a space for all involved to make contact and to express their humanity to each other. Their humanity founded on their love, reaches out, and in collaboration with today's technologies reaches even into lives across the world. Who are these people, these extraordinary ordinary men, women, adolescents and children, who feel so compelled to speak out.  And to question - LOVE.

Throughout the ages and across distinct localities mankind has sought to shape our perceptions and behaviours associated with LOVE. Our religious and secular and cultural and social frameworks have attempted to control who we should love, how we should love, when we should love and even in what way we should love. Privately and publicly. Today some of our friends have generously offered to begin our reflection here, by creating a poetic catalyst.  Poetry is a wonderful medium with which to explore complexity and nuance, to speak of the accepted and embraced, and allow a glimpse into the humanity of a REAL STORY; particularly ones that speak of those persecuted and subjected to appalling human rights abuses as a consequence of WHO THEY LOVE and WHO THEY ARE LOVED BY. 

Neuro-scientists are beginning to reveal that LOVE also acts in the human brain as a powerfully addictive drug, in a similar fashion to cocaine; a physiological occurrence influencing our individual perceptions and behaviours.  Yet, there is so much more to say... 

Love is contradiction and power, passion and desire, sacrifice and yearning.  It is capable of shifting and remaining constant, of confusion and bewilderment.  It is an addiction whether reciprocated or withdrawn, absent.  Love is accepted and embraced, forbidden and denied, and sometimes punished ruthlessly.  Yet, love it seems is also able of enduring the worst cruelties thought up and inflicted by mankind.  Love gives birth to inspirational leadership and social change, to bonds of friendship that last life-times and expressions of loyalty and respect.  Love experienced between parents, siblings, cousins, strangers is complex and deeply affects our past, present and future.  Love can rip into our guts screaming for reciprocity, and then turn to calm and soothe. It gives rise to dances of joy and laughter.  The question - WHAT IS LOVE, at first glance, is extensive and holds profound meaning within, across and between mankind.  So it seems there is much to explore. 

In the moment when HIV and AIDS has and is continuing to scourge through the communities surrounding me both near and far, I feel a shot at exploring the idea "Everyone has the right to love and to be loved" is worth our time and effort; is worth taking the risk to speak of clearly. As we begin our collaborative initiative on Real Stories Gallery to explore our humanity in the context of today's human rights abuses, I am thrilled to be joined by our contemporary artists and poets who are generously gifting their ideas and skills.  I thank them for jumping in to begin our conversation that will prompt our communities of visual poets and storytellers from across disciplines and cultures to join us, so together we will create a significant witness of the portraiture of our lives within the context of the menace of HIV.

Silence Equals Death! by Gerald A. Gerash

Gerald Gerash, early Gay Liberation activist, is in the process of forming Committee for A CURE. Contact Gerald at GerashLaw@aol.com for more information.

The message "Silence Equals Death" of the '80s and '90s that we desperately and defiantly displayed on our t-shirts and banners or whatever else we could paste or splash it on, was the cry of Persons With AIDS and their friends. We screamed: "Stop the dying. We demand a medical response for this disease that is killing us!"

Today, many of us who now take the medication for granted are alive because of our pioneers' wave after wave of protests to educate and challenge the doctors and the pharmaceutical companies. The demonstrations led by ACT-UP were dramatic and not always pretty, but they worked. Society responded and money poured into scientific research and the results were the astounding breakthroughs in research on HIV and the immune system, followed by treatment medication. I cherish and honor the memories of those heroes and heroines who fought, over the years, for their lives -- and for the many who died while waiting for science to advance.

What an amazing legacy! Their militancy not only saved our lives, but has enriched and empowered our community and culture.

Here is the connection with today: There is significant scientific evidence that a cure for HIV is attainable in the near future. A Cal Tech scientist recently estimated within 10 years or even sooner. A cure has already been achieved with the "Berlin patient." Right now, there is scientific progress towards duplicating the "Berlin cure" without the grave risks required of the Berlin patient. There are other amazing scientific projects, some of the best right here in the LA area, at USC, City of Hope, UCLA and Cal Tech and at the AIDS Research Alliance.

I want to reintroduce the slogan of the past, "Silence = Death." I do not raise it in a flippant way, but it in way that I hope respects its origins. I am saying the present refusal to adequately fund for HIV cure research is killing us. And that once again, silence equals death.

Too many of us are sick and suffering from HIV induced complications such as heart attacks, cancer, osteoporosis, high cholesterol, cognitive dysfunction (for which there are no effective pills!) and we are dying a lot sooner than we should. For many long-term survivors, treatment options are running out or have run out.

Dr. Michael Gottlieb, who authored the first report to the CDC identifying AIDS as a new disease stated recently on the 30th anniversary of AIDS, "I think the Berlin patient is an important proof of principle ... that you can, in fact, eradicate HIV in someone who already is infected. ... Now scientists in a number of institutions are working on safer ways to achieve the same result. I'm very excited about the potential for finding a safe way to eradicate HIV."

Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease (part of the National Institute of Health), referring to finding a cure for HIV, stated in a recent interview with Associated Press, "I want to pull out all the stops to go for it." However, there still hasn't been an adequate increase in the funding for cure research.

Today we know a cure is possible. The leading scientists are telling us that. With these facts, to remain silent about proceeding full throttle with funding for a cure means we will continue to die unnecessarily. I know I will die too soon and before that I'll probably be hobbled by an HIV complication solely because of criminal neglect -- the refusal to adequately fund for cure.

Why is hardly anyone speaking up and demanding more money for cure research? If those leaders and institutions who profess to act on our behalf and even say they exist for our best health interests continue to fail to address the problem, we need to tell them to get their heads out of the sand and shout, "Silence = Death!"

Fortunately, there is one national group that is focused solely on trumpeting the call for a cure: AIDS Policy Project. It is a group of AIDS activists, scientists, doctors and people like you and me, and has a wide range of supporters, including researchers, physicians, as well as playwright and ACT-UP founder Larry Kramer.

At this moment, they are our only hope to get the message out and achieve radical change. Some of APP's present projects:

• To demand that NIH increase its HIV cure research allotment from the present 3% to 12%;

• A new national campaign to support APP as the only organization devoted to advocating cure research and finding the necessary funding (both private and government); and
• Lobbying our congresspersons. There is a letter on their Web site for you to send to the NIH Director in support of increased funding.

Their Website also has a simply written "Fact Sheet on AIDS Cure Research." And join APP! There is no charge. You can also get more info by contacting: AIDS Policy Project (APP), 5120 Walton Avenue, Philadelphia, Pennsylvania 19143. Telephone: 215.939.7852. Or visit them at aidspolicyproject.org

While I consider APP the only hope at the present, I believe we need to recognize and deal with the following huge obstacles to overcome and bolster APP's campaign for a cure:

Problem number 1: Scientists lack adequate funding to perform the research! The NIH gives 97% of its money allocated to HIV research for treatment research and only 3% for cure research. While treatment research is still important, it makes more sense to allocate a larger percentage to cure research, now that the possibility of a cure is much closer than realized. In addition to saving millions of lives, the national debt could be reduced by $50 billion -- a good chunk of the country's budget crises.

Problem number 2: To my best knowledge, only four pharmaceutical companies in the US are investing in cure research. I suggest that the drug companies lack the incentive to find a cure when their corporate revenue will continue to boom by maintaining us on the treatment treadmill. However, the company that invests in the science and discovers the cure will become the premier pharmaceutical company of the world, make a lot of money for their shareholders and attract brilliant scientists.

Problem number 3: Us. We are uninformed. I hope this article will help us all become better informed and participate in whatever way you can in advocacy for a cure.

Problem number 4: HIV/AIDS-focused organizations and others that have strong programs and clinics servicing the HIV/AIDS community in the LA area. There seems to be no leadership or vision in the LA area advocating for a cure. Our community leaders seem to be in a trance; their main -- if not only -- world view is treatment meds. Simply by their stating that NIH should allocate more than a measly 3% of all its HIV research funds to cure research would be a good start. These great institutions of social services should be advocating and coordinating advocacy for a cure, such as holding town hall meetings on the latest developments on a cure. APP knows scientists and doctors here who, in a heartbeat, would respond, participate, and educate. The HIV/AIDS organizations should be organizing people and the community to meet with our congressional representatives. What about a town hall meeting to organize the grass roots, like ACT-UP did, this time around for a cure? Are they really representing us effectively and humanely if these well-intentioned organizations still lack the vision to advocate for a cure at a time when not only the lives of people with HIV/AIDS, but the science itself, cries out for it?

Real Stories

"AIDS Genocide" by Tim Barrus

Tim Barrus/ We Scream in Silence 

The drugs I need to stay alive were not available. They are being rationed. I was told to go away. The line of people behind me waiting to get their drugs was a long one.

I don’t know how you can sit behind a pharmacy counter and tell people with AIDS to go away. 

I like to think I could not do it. I like to think I would not do it. 

Often, people just tell themselves that you gotta do what you gotta do. 

There are now waiting lists for people who need AIDS drugs. This is beyond simple public health policy as revenge. This is bad public health policy because it means not that people will die, but they’re dying, and while you can maybe rationalize that (it was our own fault for the immorality we engaged in: anal sex or IV drug use or both), it has to be more difficult to rationalize the mutation of virus that takes place in people infected with HIV who then pass that mutated strain of virus on to someone else, frequently in terms of how the public health demographics work (this is where I wonder how the CDC can live with itself) to someone else already infected where the strains of virus are now becoming more and more virulent, more and more powerful, and thusly rendering antiviral medication less and less effective.

Add into this mix the numbers of people in the US who are not aware they have the virus, and let us pretend to complicate the situation even more (this could never happen) by assuming that they might be having sex with people who also are unaware they have the virus as well as people who are aware they have the virus. 

It is a witch’s brew of pathogen. 

And you approach the problem by restricting pharmaceuticals that keep people alive and viral loads of the infected suppressed. 

Well, what is the problem. 

I will tell you what the problem is in one word. Indifference. Indifference to genocide. You don’t give a fuck. Oh, he’s using genocide as the wrong term. 

It got your attention, didn’t it. I’m right, and you’re wrong. I’m immoral, and you’re Jesus Fucking Christ. 

Not just the indifference of the uninfected because they typically don’t give a fuck about anyone other than themselves, but you simply can’t ignore the indifference of the infected; those of us who stand in line being told to go home who blink and say what the fuck. We are to blame, too. We should be out there burning flags and rubber tires in the street. But no. We are powerless because there is something about powerlessness that fits into what we like about our raggedy-ass selves. So many in line are women. Black. Hispanic. Adolescent. Men on parole. Standing there with kids crawling all over everything. In our exhausted arms and on the floor.

The image of the gay male as being the stereotype here is just plain stupid. If that myth is what you think of AIDS it’s because you have been brainwashed by a media more eager to sell you laundry soap and designer clothes in Esquire than a slightly harder reality. 

You are sooooo fucking stupid. Why. Because you think it won’t affect you. Sooner or later, a pandemic affects everyone. 

Some idiot writer at the New York Times writes we can eliminated the HIV/AIDS virus from the planet by giving antivirals to the uninfected. This is hilarious. We aren’t even all that concerned about getting these drugs to the infected. The idea that we would make sure the at-risk got them is patently absurd. 

My bitching is just as patently absurd.

I don’t know too many people who lived through the bad old days when there were no antivirals because ALL of my friends are dead. I do not know a single person outside of a very small burnt-out group. The toddlers with their mothers screaming in line behind me is so disconcerting that I am almost relieved the clinic doesn’t have my drugs so I can get the fuck out of there. Who wants to know these people let alone fucking help them. I literally run for the door. 

I’m dying. You have just accelerated the process. 

Why SHOULD you care. You shouldn’t. You don’t. I’m tired of fighting this disease. You should simply let this virus spread like wildfire around the planet again so that it rids you of the people you find so problematic. You know, the prisoners, and the blacks, and the poor, and the faggots. Be done with it once and for all. The last mass burial I saw was in Kenya where they were using bulldozers to cover up the pits filled with corpses. Happy days are here again. Every single scene in a book I wrote and published called GENOCIDE has come true. And they called it science fiction. What science. What fiction. Restricting antivirals is not science. It’s social engineering. 

Other poets, supposedly friends, write to me that I am too shrill. Fuck you, bitch. Don’t ever write to me again. You are not my friend. I want nothing to do with you. I wash my hands of you, you hypocrite. You wouldn’t recognize genocide if it crawled down your throat. 

One friend wants to alert the media. But the media only wants scapegoats. Someone to hang by the balls. Someone to blame. If given a choice, Esquire would either blame the victims and sell clothes or just sell clothes to twinks who don’t give a fuck either. Sherman Alexie owns all the stories, so I assume that ignorant fuck owns this one, too.  Pardon me if I fucking steal it. 

There’s a black market out there in pharmaceuticals. I am going to use it. 

What would you do. 

How about a few corpses on the doorsteps of the GOP. They would laugh. They just don’t give a fuck. Those counts would just step over the dead in their Manolo Blahnik high heels. 

Too many of us fucks who survived the AIDS crisis (as if it ever ended) are getting older and chances are good we would cost you a fortune since Big Pharma has no incentive or plan to lower prices for drugs no one but no one can afford, and you don’t have a fortune. You don’t have fucking shit. 

What poets have is rhetoric and flowers and food stamps. 

Go ahead. Raise awareness. 

It doesn’t mean the time of day because people do not CARE. 

But, TIM, what can we DO. 

Nothing. You can do nothing. The systems you have created cannot be recreated and they are very good at the kind of grinding genocide that is obfuscated by the mythology of kindness. You can do nothing because you are powerless. You can do nothing because no one will listen to you anymore than they will listen to me. And you think the bad news is a sword of Damocles about to drop sometime in an abstract but not too distant future. Your future is here. We are ALL in the same pit of bulldozed corpses. 

YUCK, he’s teeeewwww militant for our refined, family-values taste. Listen to me, bitch. It could happen to you. And when it does, and some rich cunt who calls herself an artist goes off the deep end, you can drag your shit down to MoMA and see if they finally let you in the fucking door. 

What the people who run the system have is routine. 

But we’re not the bureaucrats, Tim. 

Yes, you are. 

You run, you pay for, you operate, you construct, you make the rules, you establish the need for both the clinics that keep us alive and the clinic pharmacies (same building, only downstairs) that kill us. You can’t hide behind the illusion of being conflicted. Dead is dead. 

YUCK. We don’t want to read this shit. Then, don’t fucking read it. You won’t anyway. 

Tired as I am of fighting you, and fighting this disease, I know how a black market flourishes. Simple supply and demand. Capitalism at its very best. 

How can a black market exist. 

The drug companies have been under enormous public pressure, not by trade delegations (the thought is ridiculous), to provide these drugs to poor people in poor countries who make less than two dollars a day. The chances that these people will be able to afford tens of thousands of dollars to buy the drugs are not good. So what do drug companies do. Easy. They find markets. 

Let’s PRETEND I go to the black market in let us pretend, Bolivia, to get my hands on the drugs that will save my worthless fat, white ass. Who do you think I will be buying the drugs from (in la Paz, you don’t need a prescription, you can get the drugs over the counter). That particular black market is called a pharmacia. And I will be buying the drugs from the same people I would be buying them from in the States. There are other black markets. China would be one. Most antivirals destined for and consumed in the US are made in Shanghai. 

And some poor schmuck of a tabloid reporter from Galley Cat is going to punch his timecard out and get off the phone to go out there to track this story down. Get a life. Esquire doesn’t have the money or the resources to track this story down and either does the LA Weekly or Time magazine or PEN or the New York Times fucking book review. You don’t read Mother Jones. Mother is irrelevant. Your media is irrelevant. Your religions are irrelevant. Your poets are irrelevant, and the fact that you don’t like my pissed-off militancy is irrelevant. Go fuck yourself. 

I will get the drugs. I am hardly going to tell you how. I am not on any of the waiting lists where people are literally dying to get these drugs. But if the drugs aren’t available, your waiting lists are as redundant as a concentration camp. 

I don’t give a fuck if you don’t like me. I would rather live than you like me. I don’t like YOU so who cares who likes who. This isn’t Facebook. This is real life and death. 

There is no like button to click.

I don’t answer the phone, and I don’t answer email either, so save yourselves the trouble of attempting to contact me. Chances are good, I won’t be home. 

The only real reason I want to get those drugs and stay alive is so I can continue to be in your fucking murderous, indifferent faces.

Human Immunodeficiency Virus (HIV)

Acquired Immune Deficiency Syndrome (AIDS)

WARNING: Explicit Imagery & Colloquial Language

The Gift of L.I.F.E.

( longevity . increase . for . everyone )

Where are our aunts and uncles, our brothers and sisters, our religious and community leaders and presidents and kings and queens, where are our FRIENDS, role models and teachers, where are our guides and warriors. Hundreds of Millions of children, adolescents, women and men are TODAY suffering because a socially transmitted retrovirus is affecting minds and bodies. Human minds and Human bodies. We have the technologies. We have the ingenuity. We have the wealth. PASSION and DESIRE will ignite the Call for a Cure.  Please join us all and everywhere.

"It's A Green Light." by Tim Barrus

International AIDS Society (IAS)

The 2011 Rome Statement for an HIV Cure.

Please add your name to the Call for HIV Cure Research to be Accelerated.

President Barrack Obama (July 2010)

National HIV/AIDS Strategy

The Federal government can’t do this alone, nor should it.  Success will require the commitment of governments at all levels, businesses, faith communities, philanthropy, the scientific and medical communities, educational institutions, people living with HIV, and others. Bridging the gap in access to HIV medications: Over the past year, a growing challenge has arisen as an increasing number of people living with HIV are placed on waiting lists for state operated AIDS Drug Assistance Programs (ADAP). 

Real Stories

"It's My Life. My Death" by Etienne

Tim Barrus/ ART IS TELLING YOU A STORY

Every now and then, I am compelled to ask myself: why are you here. In this place. What are you DOING with your life.

And so I had to ask myself what was I DOING at Real Stories. All this time, it’s just felt right.

But now, I feel compelled to articulate it, and I have arrived at this new awareness.

If it’s about AWARENESS, then we as a species are in dire need of better — I said BETTER — storytellers.

Do not tell me storytelling is a dated animal because I am here to tell you that storytelling is as potent as it ever was.

Hollywood has failed us.

Book publishing has failed us.

The institution of education is about testing and it has failed us.

The media has failed us. The idea behind it was about informing us. The media informs us about what the corporate fathers want us to know.

Government has failed us. It doesn’t work.

Culture has failed us. Cultural institutions are about acquiring size and vis-à-vis size, prestige.

We are on our own.

I am working with Real Stories Gallery because it has the potential to have a voice. We need better storytellers. We need people who understand that stories are the one thing that can cross a border without a passport.

How can storytelling have any impact on a pandemic.

It’s storytelling that will exist when some distant generation of humanity begins to ask the question — what were they DOING. What were they THINKING. How could they allow this to happen.

And those questions are going to hang there in the air.

It is a fantasy to think that storytelling will move you. You cannot be moved.

But it’s more comfortable for me to PRETEND to think you can be moved. So I pretend. I do it every day. I pretend you are listening. My gut knows you are too distracted, too tired after coming home from work, you’re lucky to have a job at all; they’re working you like slaves and you know it.

AIDS isn’t just a medical war. AIDS isn’t just a financial war. AIDS is a culture war. In AIDS, the haves have virtually ALL the resources, ALL the technology, and they don’t even let their own people access it. The have nots have nothing. How can Real Stories have any impact in a deeply embedded poverty set of cycles like Appalachia or where I live in the USA.

Are you kidding me. The people who live here, the culture that exists here, embedded poverty and all, lives and dies by stories.

There are HIV ghettos now. Federal policy has created them. I have refused to move there. But all the health care is there, and people have followed it. So they can walk to the clinic. It’s that simple. So there is an HIV ghetto now because of all the people who have moved to Asheville in order to access public health. There is only one private physician in the ENTIRE western mountain area of the state who will even see patients with HIV; all the other physicians for HUNDREDS of miles refuse to see anyone as obviously immoral as people with HIV. At first, I found it amazing in this day and age supposedly of nondiscrimination that an entire community of doctors could refuse to treat one particular disease, but there it is.

Where are the stories that will tell you about that.

Where are the stories that will tell you about what it’s like to live in an HIV ghetto. If Real Stories fails, I will fail, and you will fail. Art is telling you a story.

We are on our own.

Real Stories

"It's Boy Story. His Story" by Tim Barrus

Reverend Mary Scriver, BS, MA, MDiv.

"Who is Tim Barrus. Founder, Cinematheque Films; Artistic Director, Show Me Your Life"

We know historical people only through writing and film.  This is the way I also know Tim Barrus. I have never shaken his hand or eaten a sandwich he made.  But I have corresponded with him daily since April, 2007, and collected an archive that fills twenty-five 2 inch 3-ring binders.  I have searched the web carefully and know a great deal about his accusers and maligners and their motives.  One is a reviewer who fancied himself an expert on oppressed people and demanded intimate particulars, one was a minor porn writer who fancied himself a peer, and one was a pop Native American writer who had once had the same editor as Tim. If every blog about Tim written by a person who had not read any of the Nasdijj books were removed, very few would remain. Wikipedia would also have to remove itself, since the editor of the Native American writer section was not even American, much less Native.

One of the uses of stigma is to prevent any objective investigation or analysis.  It justifies hysterical attacks that include anything from grade school bullying to lynch mobs.  The cry of "hoax" became an excuse for a lot of yellow journalism and mock indignation over the use of pseudonyms, a convention among genre writers and those protecting other people.  No one dared investigate the persecutors.

In this way Tim's pre-AIDS participation in the Great Experiment that was San Francisco in the Sixties and Seventies has been twisted into something fancied by people who know nothing about it but media hype.  They demand the surrender of privacy even as they condemn the subject matter.  

Now Tim sees that it is time to push hard for a cure for AIDS.  The routes to success are marked -- only money is necessary to get there.  Now stigmatizing Tim continues to be for personal turf protection. Their competition for money and prestige depends upon discrediting others.

It is time to stop being shocked, SHOCKED, by Tim Barrus and to join in the work at hand: curing AIDS. It is almost too late to prevent failed nations and certainly too late to prevent the destruction of families.

The effect of stigma is often to lump a lot of phenomena into a big category that no one dares to inquire into it or admit they even think about it.   Using the model of contagious disease, people react with fear and avoidance so they won't "catch" whatever it is.   (It used to be cancer.) To defend themselves from their fears, they convince themselves that people who have diseases or are poor or are nonconformists are inherently EVIL, which justifies the idea that they are being rightfully punished.   They deserve it.

The isolation of being excluded like this, combined with the deprivation of basic shelter, food and medical care, will eliminate many people quickly.  But luckily for human beings, there are always a few individuals -- sometimes religious leaders, sometimes artists, sometimes mothers -- who will resist and deplore this kind of thinking.  They see the essential potential goodness and "soul" of every human being and seek to defend it.  I've always been impressed by the stories of American frontier wars in which Indians had left many wounded enemy warriors on the field outside their camp.  Late at night, covered by darkness, there were often compassionate women, sometimes quite old, who would creep out to give water to the dying men.

AIDS does not just afflict one class of people.  All human beings except the lucky 1% born with genetic immunity can be debilitated and then killed by this viral code in the blood.  If there is no access to the present state-of-the-art meds, people will die for sure. Prosperous corporations and countries have discovered the elegant blackmail of not funding meds for uncooperative nations.  Those who die are not gay men from the Seventies.  Those people have learned how to protect themselves.   Rather they are wives and children struggling to stay alive on pittance incomes.  Yes, they often but not always have dark skins.  And they may be IV drug users.

Why do legislators fear them so?  Why does the media turn away from them?  Why do churches not speak for them?  Because of the stigma.

Real Stories

"Don't be afraid to look me in the eye" by Tim Barrus

Tim Barrus (USA; Artistic Director, Show Me Your Life; Founder, Cinematheque Films)

THE CUPBOARDS ARE BARE AT THE AIDS PHARMACY

I drove to the clinic today to pick up the meds. The medications are, after all, what keep me alive. And kicking.

There were no meds. They don’t have any. They’re out.

They glare at you.

And the reception you get is why are you scumbags bothering us.

Answer: I have no fucking idea.

Why AM I bothering these people.

At what point do they become the enemy.

At least I am not on any of the waiting lists for drugs. I can get in the door. But what good does getting in the door do if there are no drugs. The waiting lists for drugs are growing longer every day.

Wake up, America.

Public policy has been constructed around a disease where the operant theory contains scenarios where if people being treated go untreated, the virus mutates.

It becomes more virulent. And what medications you do have access to become less and less effective. You begin to develop different strains where the bad people have bad strains and the really, really bad people have the worst strains, and then there will always be the uninfected who are straining to support a system they have created themselves that is unsustainable.

No one can afford these drugs anyway. Now we have waiting lists for drugs no one can buy without government assistance that is evaporating right before our very stupid eyes.

It would be easier to be dead.

I walk into these places and I am immediately recognized as the other side in a war of sides that lend themselves to no sane definition. Outside. Of. The infected and the uninfected. Inside. My world. Welcome to the pleasure dome.

How many of my “friends” with HIV have told me that suicide is an option. You’re right. It would be easier to be dead. It’s just not an option for me. I want to be here to fight back. It’s not a battle against disease. It’s a culture war. It’s just another assault on those of us the system would rather rid itself of. We are problematic.

As healthcare becomes less and less accessible, and more and more expensive, this scenario is going to be repeated all over this great country known as America (I have a few other choice words that I call it).

I send out these articles I write about AIDS health care to American editors, and the response I get back is exactly the same. Why am I bothering them. Don’t I understand that they are important and they’re busy.

Not really. You’re just not all that important and you’re just not all that busy. To sit there in your New York offices with your thumb up your ass.

You, Mr. and Mrs. Joe America, you didn’t even know that there was such a thing as a waiting list for AIDS drugs. Well, there is. And now that you know you don’t give a fuck. You’ve got two jobs to tend to and kids to feed and a mortgage to pay and food to put on the table if you have one. Why should you care about people who have done it to themselves.

You should care because when the bodies start falling from the sky again, any one of them could be you.

You are not immune. Your mortgage and your kids and your SUV aren’t going to save you.

But monogamous heterosexual couples do not get HIV.

No, but the system they live in, too, can easily collapse. Is collapsing.

Tina Rosenberg at the New York Times is “hopeful.” Why. Because if we make antivirals available to the uninfected we can “end the pandemic.”

We can’t even get the medication to people who are infected.

Get a clue, Ms. Rosenberg.

The writers at the New York Times live in an aristocratic bubble.

Why are you bothering them.

I shrug. I have no idea why anyone bothers anyone.

I have been screaming for a long time now that the cupboards will go bare — first, for all the wrong people. You know, the poor ones. The ones they would rather be rid of.

I get all these reactions from the wealthy normals about my inappropriate anger.

“He’s too militant.”

Can you imagine these same people walk into the drugstore but there’s no medication for them.

It will never happen. It’s unthinkable.

I have always said that your little systems were a grinding genocide.

Heroin razzle. Heroin dazzle.