Are You Positive?
Page 36
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Sarah makes her way toward the front of the auditorium, followed closely by Gwen and Kate. They find three seats together just as a large black woman stands and addresses the audience.
“Good evening, ladies and gentlemen. I’m not going to say much before we play the film, because it will speak for itself. But you should at least know that this is a documentary produced for the BBC and originally aired in England on November 30th, 2004. After we watch the film, we have a very special guest with us, Celia Farber, who was a researcher for this documentary, and she will be happy to answer some of your questions. So all I will say now is to take out your tissues and be prepared for some very disturbing and upsetting things you are about to see. Can we turn down the lights, please?”
As the room darkens, a large white movie screen lights up, and a group of young men and women in a New York park are singing about freedom, reminiscent of the glory days of Up With People. But the scene quickly changes to images of the poorer parts of New York, and introduces the viewer to Regina, an older black woman, and three of her granddaughters. Regina’s daughter, Veronica, was diagnosed with AIDS, and Garfield, Veronica’s son, had been diagnosed HIV-Positive.
“Regina and Veronica had wanted to have a say in the treatment that Garfield received,” the movie says. “But instead, the New York authorities insisted Garfield stay on drugs and medicines that even the other children could see were making him ill.”
The three granddaughters, Garfield’s cousins, describe what happened to Garfield when he was taking the medications, and why their Aunt Veronica decided to stop giving Garfield the drugs. “He started to get well,” one of the girls says, “but when he went for a check-up, they gave him the medicine again without her knowing it.” And Garfield got sick again.
Regina explains how Garfield lost his appetite and didn’t eat, and got skinnier and skinnier. When Veronica went to the family doctor for help and advice, he offered her $25 a month if she would put Garfield in an experiment. When Veronica declined, the doctor told her, “You will regret it.”
Veronica took Garfield off all medications, and immediately his health improved. Then one day Veronica got an unexpected visit. New York’s Administration for Children’s Services (ACS) was at the door, with the police, to take Garfield away.
“In New York,” the documentary tells us, “you don’t need a court order to take a child from its parents.” ACS was given exceptionally strong legal powers by Mayor Rudy Giuliani to decide what’s best for the city’s kids.
Garfield disappeared, one of 23,000 children in New York taken from their parents and placed with foster parents or in children’s homes. According to the film, ACS workers claim they can do whatever they want, and get away with it.
Gwen leans over to Sarah, “My god, is this really true?”
Sarah nods her head.
Next come pictures of the Incarnation Children’s Center (ICC) in Harlem, run by the Catholic Church, where many HIV-Positive children end up if their parents or guardians refuse to medicate them. “For years it was the center of highly controversial and secret drug trials on orphans and foster children as young as three months old.”
Documents appear on the screen showing evidence of the drug trials performed at ICC, including whole cocktails of medications which the manufacturers admitted had side effects of severe stomach pain, muscle wasting, and organ failure.
Gwen sees that Sarah is already starting to cry. She reaches over and takes Sarah’s hand, squeezes it, and whispers, “Are you sure you want to see this?” Sarah nods, Yes.
Dr. David Rasnick, a California researcher, describes the lethal nature and horrific side effects of some of the drugs being given to the children at the ICC, accompanied by disturbing pictures. He then drops the bombshell. “I understand,” he says, “that the ICC sends these kids to hospitals, and they cut a hole in their belly and put in a feeding tube to administer these drugs for the children who refuse to take them.”
There is an audible gasp in the audience, while Gwen and Kate and Sarah look at each other in horror as pictures on the screen showed very young children with G-tubes surgically implanted in their stomachs, sticking out through their bellybuttons.
A fifteen-year-old boy, whose face is hidden, talks about his own experience at the ICC where he spent most of his life. He admits that he didn’t want to take the medications, but “if you want to get out of there, you have to do what they say.” He would even tell his friends and newcomers into the ICC not to refuse to take their drugs, because “you don’t want a tube in your stomach.”
Sarah glances at Gwen and Kate and sees the tears beginning to flow for them as well. She passes a Kleenex down the row and then wipes her own eyes again.
The documentary continues by explaining that federal rules in the U.S. require that permission for children to participate in drug trials has to be given by their parents or guardian. But the so-called “legal guardian” of the children in the ICC is New York’s ACS, who takes these children from their parents and makes them available for the experiments. Most of the kids are from the poorer segments of the population – children born to drug-addicted mothers, for example – and 98% of the those in foster care in New York are black or Latino.
Jacklyn, a pediatric nurse who worked at the ICC for five years, explains that she never thought she was doing anything wrong, since all the children were HIV-Positive and the doctors said she should expect to see the worst. When the kids would vomit, lose their ability to walk, have diarrhea, or even die, she was told it was because of the HIV. She believed for a long time that she was doing the best she could to save these children from this deadly disease called AIDS. She had no idea she was part of drug experiments being run on the children without anyone’s permission.
Then she started proceedings to adopt two of the girls from the ICC and brought them home to her own family. “I gave them all that I could,” she explains, “on every level: good quality food, rest, the best private schooling, occupational therapy, speech therapy, physical therapy, tutoring, and the best psychologists I could find. But I just didn’t seem to be making any headway. The only thing left still making them sick was the medication I was giving them.”
She took the girls off the medications that the ICC insisted upon. The results were immediate; the girls got healthy again.
But on a Saturday morning not long after Christmas, the ACS arrived and took the two girls away. A social worker from the ACS explains that because the parents did not agree with giving the medications required for these two HIV-Positive girls, they had to be returned to the ICC.
Jacklyn has not been able to see the girls since then and has no knowledge of where they are or how they are doing. She was later taken to court and convicted of child abuse for refusing to give them the prescribed medications.
“Oh, my god!” someone screams from a few rows in front of Sarah, who can hardly hear it through her own sobs.
Unfortunately, the documentary continues with pictures of a mass grave owned by the Catholic Church close to Manhattan, where over 1000 children are buried, at least some of whom were involved in these drug trials, who died, according to their death certificates, of “natural causes.”
Sarah can’t hear very much of the next few minutes as her tears overwhelm her. She didn’t miss much – some politicians giving lame excuses of why they can’t do anything, someone at the National Institutes of Health insisting that all participation in these drug trials was voluntary, and some drug companies involved claiming that all experiments were run under strict standards and complied with all local laws and regulations.
Sarah blows her nose and begins to watch again as Regina, the grandmother featured at the start of the film, wins a court order to visit her grandson, Garfield, at his new foster home. The place is a dump, and Garfield is hungry. But his new foster mother gets $6000 a month from the city to have him there, along with three other foster children.
“What makes h
er a better guardian in the eyes of the authorities,” the narrator explains, “is that she gives Garfield the medicine demanded by the ACS, and Regina refuses.”
“I want to get him back,” Regina implores. “I want my own grandson.”
It takes a while for the credits to run, which is a good thing. There wasn’t a dry eye in the room. Then, as the lights are turned up, people start shifting in their chairs, wiping their eyes, and looking around. There are about forty in the audience, a mix of men and women, black and white, some obviously poor and perhaps even homeless, some gay, some middle-class soccer moms like Sarah, others professionals like Gwen and Kate.
The woman who introduced the film stands up again. “I’ve seen that movie a number of times, and I still get angry, and frustrated, and so depressed each time.” It puts everyone else at ease to know they aren’t alone in what they are feeling.
“As I said before we started, we are very fortunate to have Celia Farber with us this evening. You may have seen Celia’s name on the screen during the end credits as a researcher for this documentary. For those of you who might not know, Celia is a journalist who has been covering the AIDS story since 1987, starting with Spin magazine. She has written for Rolling Stone, Esquire, Salon, Gear, the New York Press, Red Flags, and others. Her book Serious Adverse Events: An Uncensored History of AIDS was published in 2006. So it’s a real honor and a pleasure to have Celia with us tonight, and she’s agreed to answer your questions about the film you’ve just seen. Celia?”
A slender, very attractive woman, probably in her late thirties, stands up and turns to greet the audience. Looking at her, you wouldn’t suspect that she had been the biggest thorn in the side of the AIDS Industry over the years, almost single-handedly at times exposing the myths and fraud associated with the suggestion that HIV causes AIDS. Her article, "Out of Control: AIDS and the Corruption of Medical Science" that appeared in the March 2006 issue of Harper's magazine is credited by some as the beginning of the end for the AIDS division of the medical/pharmaceutical complex.
But it was also obvious that Celia had taken quite a personal beating for her efforts, and she was clearly more comfortable in front of a keyboard than an audience. She hesitates, noticing the emotions in the room, and then very slowly says, “I was very involved in the making of this documentary, but it still gets to me every time I see it. So maybe you should just ask me questions, if you have them.”
There was a long silence. Finally a woman in the third row, with disbelief and trepidation in her voice, asks the one question going through everyone’s mind: “Is this really true?”
Celia bows her head for a moment. “I can tell you with complete certainty that it is definitely true. I personally verified all the facts that you were told in this film.”
More silence, not because there were no questions, but because it was taking time for everyone to recover from watching the video. Then, from somewhere behind Sarah comes a voice, “How did you find out about this to begin with?”
The question seemed to calm Celia a little, allowing her to recount history rather than deal with the heavy emotions involved. “Liam Scheff, a friend of mine and a free-lance investigative journalist, was actually the one who broke the story. I met Liam several years ago when he came to New York, where I live, and started telling me about the Incarnation Children’s Center. He had found out through the AIDS ‘dissident’ grapevine that one of the mothers of a child in the ICC wanted to expose what was going on there. At that time, Liam was doing his own private research on the story. I remember when I read his first draft being absolutely numb and shocked, and, I have to admit, wondering how this could possibly be true, just like you. Then he came home one day and told me about the G-tubes that they were inserting in these children’s stomachs. In my twenty years of writing about the HIV/AIDS issue, I had never encountered anything quite so… hideous, so sordid, so violent. This was different from anything else, hitting deeper nerves, involving disadvantaged children; and I was certain that some big magazine would buy and publish his article and it would create major waves all over the world.”
While Celia pauses, someone in the audience suggests, “Obviously, that didn’t happen.”
Celia agrees. “No, it didn’t. Everyone that Liam sent the story to rejected it, and attacked him personally as well. But I had a friend who was the editor of the New York Press, and in January of 2004 I asked him to look at the manuscript. He decided immediately to publish it. The article was called ‘The House That AIDS Built,’ and I brought a few copies tonight for anyone who wants to read it.” She points to a table on one side of the room where some papers were stacked. “It’s also available on Liam’s website at www.liamscheff.com.”
Sarah makes a note of the website, while Gwen and Kate exchange a few words she can’t hear. Then Gwen says, “I’ve never heard of the New York Press.”
“I’m not surprised, unless you live in New York City,” Celia concedes. “At that time, it was a small, alternative weekly paper, the chief competitor to The Village Voice, with a circulation of around 100,000. But after the New York Press printed it, Liam’s story was picked up by other magazines and newspapers around the world, and even the New York Post got involved. That’s how Jamie Doran found out about it. Jamie Doran is an independent filmmaker who produces all kinds of documentaries and sells them to people all over the world, including the BBC. He’s the one who produced the film you’ve just seen, Guinea Pig Kids.”
This time it’s Kate who speaks up. “And how did you get involved?” Sarah’s glad that her friends are as interested in this as she is.
Celia looks around and finds a stool, drags it to the center, and sits where everyone can still see her. “About halfway through the production of the film, Liam and Jamie had a falling out, and I was hired by Jamie to finish the research. This was the summer of 2004, and we thought that my job would take about three days. It ended up taking a few months instead. The main thing we had left to prove was that at least some of the children who were in the Incarnation Children’s Center had died there from the drugs they were taking.” Celia turns and points to the blank white screen. “Do you remember seeing the mass grave in the video, part of a Catholic cemetery?”
Heads nod around the room.
“Well, my job was the find out who in that grave had been in the Incarnation Children’s Center and then confirm what they had died of. This was literally a mass grave for all the indigent children who had died in New York City, meaning that it was simply a very big hole in the ground, covered by a sheet of Astroturf. At one point I pulled back the Astroturf on one corner and saw a lot of small pine boxes. It was very eerie. There were some teddy bears and roses and angels and hearts placed around the grave; but there were also a lot of bugs crawling around, and the whole feeling was one of desolation – almost ghoulish.”
Celia pauses, obviously starting to recall some very difficult memories. Everyone in the audience stays perfectly still and silent, both out of respect and sympathy, until Celia is ready to continue. “Do you also remember seeing some tombstones in a circle around the grave?”
Heads nod again.
“We knew that this mass grave was supposedly the only place a child could be buried if they had died while at the ICC; and there were about a thousand names listed on these tombstones. It took me hours just to write them all down to cross-check later with names of the patients we had from the ICC. When I had finally finished, I remember saying a prayer to those children before I left. It was simply a promise that I would do my best to honor the truth of what had happened to them.”
The tears start to flow again all over the room. Celia’s voice breaks slightly as well, and she takes a couple deep breaths.
“The next step was to confirm that the children’s names we knew had been in the ICC were in that mass grave. It turned out – and it threw us for a loop, actually –that some of the names we had confirmed from our sources had died at the ICC were not on the tombstone, which
meant that there were now some children who were simply missing. Where did they go? What happened to them? Were they actually in the grave but their names had never been added to the tombstone? Was there someplace else where similar children were buried that we didn’t know about? Were they simply listed on the tombstone as ‘Baby X’, or ‘No-Name Y’? Did we even have the right spellings for the names? As I tried to follow up on this, I met with tremendous resistance everywhere I turned. People would slam down the phone and refuse to talk to me, others got angry, and the whole thing took on this very strange feeling of intruding into another world – the world of the dead.”
Celia’s body shutters as she speaks those last words, as if it were remembering the experience as well as her mind. But it’s clear she isn’t finished with this part of the story, so the room remains quiet, giving her all the time she needs.
“There were a couple of names we had been given from our sources at the ICC of children who had died there whose names were on the tombstones. I then had to go to the Office of Vital Records in downtown Manhattan, where they keep all the files on those who were born and died in New York City. It took me weeks to find what I was looking for – weeks of leafing through all the books, looking for a needle in a haystack. At the same time, I was interviewing funeral home directors, caretakers for the graveyard, and anybody else I could think of to find the direct link to these children from the ICC. In the end, I had two matches with the right names, the right spellings, the right dates of death and everything; and I finally got the death certificates of these two children. Now I had to prove that they had died of the AIDS drugs they were taking, and that wasn’t so easy. But to make a long story short, in the end, we did it.”
There’s a prolonged silence. A couple of people got up and went to the table to pick up Liam’s article, and Sarah wonders whether the evening is over. But there’s more she wants to know, and Celia hasn’t moved.
“Did you ever go inside the ICC yourself?” As Sarah’s voice breaks the spell, everyone sits back down.
Celia looks directly at Sarah, as if recognizing a kindred spirit. “I went to the ICC once. There were people protesting outside, screaming about the torture going on inside. I was carrying a video camera, and I knocked on the door. As soon as they saw the camera, they slammed the door in my face. Not long after that a big black car pulled up, full of children from the Center, and they had to get those children from the car into the house. Every single child in that car was a complete vegetable. Not one of them could walk; one was in a wheelchair, the others had to be carried. They were all completely emaciated, pale, and totally lifeless. They looked like terminal cancer patients, or perhaps even severely retarded. They had that look, you know.”
“There was one little boy being carried into the building, and as he passed me, we made eye contact. All of a sudden it hit me, and I felt ashamed. ‘Oh my god, what do these children think of these protesters, yelling about the prison these kids are living in?’ And in that moment I felt immense sadness, hopelessness, guilt, and shame. I couldn’t understand why their so-called caretakers – people that were obviously nice to them and, quote: ‘taking care of them’ – couldn’t see that something was destroying these children! There’s no virus that destroys children like this. Why couldn’t they see what they were doing?”
“Of course, the feelings coming from the ICC staff toward us were that we were evil and scaring the children, and I felt that. It was an impossible situation. You either wanted to storm the building and liberate these poor kids, or don’t show up at all, because it was the worst of all possible worlds for the children. We’re communicating to them that their caretakers were their captors, and were dangerous. I almost wished, for the sake of the children, that we would stop what we were doing. If nothing else, as they are being euthanized, let them feel that they were loved. I know that sounds strange, but does it make any sense?”
A number of people begin simultaneously expressing their sympathies to Celia and for the children. Celia encourages a few to talk about what they are feeling at the moment, and many are crying all over again. Finally there comes another question from the back.
“Were you ever able to talk directly to any of the staff at the ICC?”
“Yes, I was. After Liam’s article ran in the New York Press, we got a letter from a nurse at the ICC saying that the story was completely true, and that her job was to make sure that all the kids at the ICC summer camp got their medications. When I interviewed her, she said things like, ‘None of them ever left the infirmary…. They were completely lifeless…. They were sick as dogs all the time…. They would just park them at this summer camp where they would vomit the whole ten days.’ I sat down with this nurse for hours and let her tell me everything that was going on. It was the confirmation we needed that everything we were saying in the video was accurate.”
The large black lady who introduced the film is the next to speak. “I understand that this film never played on TV here in the States, that it was just shown in England and Germany. What if we want our friends to see it? Is that possible?”
“Fortunately, yes. A friend of mine keeps it posted on the Internet despite all the pressure and attempts to make him take it down. Your friends can go to www.guineapigkids.com and see the entire film there.”
“But what happened? If all of this is true, why didn’t the whole world hear about this, and why wasn’t something done about it?”
Celia obviously understood the question perhaps better than anyone else, and had searched for those answers herself. “I don’t think many people are aware of the political power that the AIDS Industry and the pharmaceutical companies have in this country. When the story first broke in the press, the black community in New York City was very upset about it. The leaders of the black community were actually livid and said to us that this was a more important issue to them than police brutality. After all, there were children involved. Even the elected City officials were outraged. There were City Council meetings where hundreds of people lined up at the microphones to complain about the Administration for Children’s Services and the ICC. As I sat in on a number of meetings, I started to get the feeling that this could actually result in race riots throughout the city, it was that much of a hot issue. I had hope that the murder, the condescension, the racism, the horror – all of it would lead to something positive to rescue these children. I don’t like violence, but as far as I was concerned, if it took hundreds of thousands of black people rioting in New York City to make the powers-that-be stand up and take notice and do something, then so be it. And then, almost overnight, it all went away; and to this day, I don’t know who got paid off or by whom to pull the plug and go back to business as usual; but the issue simply died.”
The overwhelming sadness that had pervaded the room is now turning into anger and indignation. Someone emphatically wants to know, “Is this still going on today?”
Celia hesitates a moment, deciding exactly how to answer that question. As a journalist, she wants to be sure that anything she says is true. “I can’t say for sure whether it’s still going on at the ICC. I know that something happened and at one point the Incarnation Children’s Center stopped their experiments suddenly. But there were at least six other houses we know about in New York City doing the same thing at that time that we did not expose. So as far as I know, unfortunately, the answer is probably, Yes. And I had a personal experience just in the last year that leads me to believe that nothing has really changed. One of the ICC foster-parents – I’ll call her Mary – got in touch with me, telling me ‘they’re killing my child.’ The boy was about twelve years old and was on a bucket-full of medications. His real mother had died from the drug AZT, and he had run away from the ICC, trying to escape. But they caught him and put him in a hospital, and in addition to his AIDS drugs, he was put on a lot of psychiatric drugs. At one point the boy asked his doctor, ‘Is there a shot you could give me so that I could die?’”
“Mary ha
d a nice home and a good job, and all she wanted as his foster-parent was to bring him home and get him off all those drugs. But they wouldn’t hand him over, even after a lot of pressure from some very highly-placed politicians.”
A male voice interrupts, “Don’t you think they believe they’re doing the right thing for these kids?”
Celia stands up, as if to emphasize her answer. “Yes, I do think these people believe they are saving these children, or at least doing the best they can. When they see the condition of these children, and if they are then told it’s because of HIV, they would naturally redouble their efforts to fight the HIV with more drugs. In fact, they say that they’re giving these children access to drugs they would not normally be able to get – that we are the vermin, and how dare we question their actions. But they don’t stop for one second to consider that the problem is what they’re doing to these kids with the drugs and not the HIV.”
“I mean, I just can’t believe the arrogance of these people, that they would have no shame, that they are actually proud of what they’re doing. It’s hard to imagine these people are that evil; I think instead that it’s a combination of being incredibly stupid and willfully blind. So I don’t know what to say, and sometimes I have trouble understanding who’s the good guy and who’s the bad guy in this story.”
Although she stops for a minute, it’s clear that Celia wants to say more, perhaps even things she may have never said before in public. “I’ve recently come to an even more disturbing conclusion. I think there’s a strange kind of hate permeating our society that gets directed at anyone who tests HIV-Positive, even if they’re children. Liam Scheff kept telling me, ‘These people in the AIDS Industry are Nazis,’ and I would argue with him. But maybe he’s got a point, because there seems to be an attitude in our culture that if someone is HIV-Positive, their life is worth less than everyone else’s. I can almost hear the doctors at the ICC saying, ‘Anything we do, we get to congratulate ourselves – even if we destroy these children in open view and insert tubes into them and lock them up in a chamber of horrors where they run around screaming from the pain. No matter what we do, we’re still heroes, because anyone who is HIV-Positive has already fallen off the scale of humanity; and we’re justified in taking whatever actions are required to protect the rest of us.”
“So in the end I felt that this film was not just about these children and their G-tubes, but about the whole fascist police state of AIDS and pharmaceutical drugs, particularly as it affects powerless, penniless, minority families.”