When My World Was Young 1945-56 The Yellow Brick Road 1956-60 What a Wonderful Town 1960-61
Wonderful Town (pt. II) 1962-66 The Gay Sixties 1966-70
The Juicy Life 1971-76
Juicy Life (pt. II) 1976-80
Losing Alexandria 1981-87
The AIDS Spectacle
Losing Alexandria (pt. II) 1987-1990's
The invisible specter of AIDS was more real more powerful than anything else that was happening. People who once wouldn't have known a crucifix from an Allen wrench were shopping churches; while religious zealots were mounting their campaigns against people with AIDS. The Christian Broadcasting Network, founded by evangelical preacher Pat Robertson, was a fountain Christian homophobia and casual medical disinformation, and more than a few Roman Catholic zealots were mounting their crusades against people with AIDS.
THE "GOOD AMERICANS"
In the early years of the epidemic America's churches, black and white, working class and middle class looked the other way, or held their noses where AIDS was concerned - or worse, promoted ignorance and fear and instigated hatred. The televangelical showmen of the born-again and evangelical stripe Pat Robertson, Jerry Falwell, Oral Roberts, et al spewed hatred and inflammatory rumor over the tube, R.C. Cardinal Kroll rattled on about divine vengeance. And the Big Apple's very own Prince of the Church, Cardinal O'Connor pulled out all the rhetorical stops in opposing the use of condoms by anyone of any sexual orientation to prevent the spread of AIDS: it was in his words "evil act." O'Connor would eventually force the resisting Jesuits not to allow Dignity, the gay Catholic organization, to use St. Francis Xavier parish, and he forbade any other parish to accommodate gay-positive organizations.
In the years when gay men, IV drug users and women who had had sex with the latter comprised the vast majority of those infected with HIV/AIDS America's mainstream religious folks didn't give a fart in a jug about the epidemic, nor about how their fellow Christians were whipping up a hate storm against people with AIDs and gay men. Like the "Good Germans" of the 1930's, who wouldn't have dreamed of supporting the Nazis but refrained from opposing them either, the "Good Americans" of the 1980's likewise looked the other way; and allowed the intolerance and persecution to run rampant. Most of these mainstream "Good Americans" are still alive and well and are a major part of the voting population, and they are still often looking the other way...is it any wonder that since the early 1990's twenty-nine states have introduced clauses into their constitutions explicitly banning gay unions, and that the discriminatory Defense of Marriage Act was created and signed in national law?
WHO BROUGHT US TO THIS?
That ignorance and hatred numbed the many normally reasonable citizens, and stimulated a not unnumerous worse lot to action had its origins at 1600 Pennsylvania Avenue, Washington, D.C. While President Reagan was known to be most dedicated to the ceremonial grandeur of the presidency and inclined to fall asleep at cabinet meetings; nevertheless, there was an entire executive branch staff attentively minding the store for him.
A concerned national leadership would have informed the public, and been a counter-weight to the haters and fear-mongers who seized the day. One of the greatest obstacles to this was the fact that in large measure these forces were Evangelical Christian religious organizations and believers and ultra Rightists both of which the Republican party had deeply depended upon to gain national power.
"AIDS is not just God's punishment for homosexuals; it is God's punishment for the society that tolerates homosexuals."
Jerry Falwell, televangelical preacher and
founder of the Moral Majority
Gallery of Hate Mongers: Left to right Rev. Pat Robertson, Christian Crusade; Rev. Jerry Falwell, Moral Majority; Rev. Donald Wildmon, American Family Assoc.; James Dobson, Focus on the Family; Pat Buchanan, Presidential Communications Director; Jesse Helms, U.S. Senator; William Dannemeyer, U.S. Congressman and crackpot extraordinaire.
Far from supplying leadership, the executive branch of the government attempted to slam a lid of silence down on the health crisis. As C. Everett Koop, the Surgeon General from 1981 to 1989, was later to explain, this was "because transmission of AIDS was understood to be primarily in the homosexual population and in those who abused intravenous drugs." The president's advisers, Koop said, "took the stand, 'They are only getting what they justly deserve.' "
Under Secretary of Education and domestic policy advisor to the White House, ultra-conservative Gary Bauer (right) was one of those hard at work as Mr. Reagan was dining with the likes of Princess Diana, whose name he forgot, or cementing the nation's relations with the Land of Nod while the cabinet met. An ardent booster of the homophobic Family Protection Act (1982), Bauer's most pernicious role was in shaping the federal government's early non-response to AIDS. According to Koop, Bauer had consistently opposed explicit educational material aimed at preventing the spread of HIV when he was Reagan's domestic policy adviser. Furthermore, as late as 1986, Koop has said, Bauer visited his office to urge the removal of any references to condoms from the Surgeon General's report on AIDS which he was preparing. Koop, a self-declared religious fundamentalist, refused. Edward Brandt, Assistant Secretary of Health from 1981 to 1984 has been quoted as saying, "There were a lot of obstacles to AIDS prevention back then. For instance, the media didn't want to use explicit language in describing how to prevent transmission, and neither did Congress. I spent a lot of my time trying to avoid setting people off. There were a lot of people who accused me of doing too much" to combat AIDS.
"Doing too much" this is an extraordinary claim! Brandt himself was the very man who excluded Koop the Surgeon General from meetings of the Executive Task Force on AIDS in 1983, and he was the man whose office gave reporters instructions in advance of Koop's press conferences that the Surgeon General would not answer questions about AIDS, and that he was not to be asked any.
The hate-inspired agenda of ignorance churned out by the Religious Right was so pervasive by now that it could sweep into a small town and the life of a straight, non-drug using boy and poison both. In his struggle with hatred in Kokomo - public screams of "We know you're queer," gunshots through their family's living room window and much more, many music celebrities, i.e. John Cougar Mellancamp, Elton John and Michael Jackson and Olympic diver Greg Louganis and actor Matt Frewer rallied to him. And it was Elton John who loaned Mrs. White the money to put a down payment on a house in Cicero, IL and allow she and her son to escape the caldron of hate in Kokomo. And it was only at this point that the "Good Americans" who though not actively participating in the hate-mongering, but fastidiously looking the other way, finally became comfortable enough to begin to speak up in any number such is the power of celebrities. In this respect mainstream Christians had acted comparably to the "Good Germans" of the 20's and 30's. However, unlike those Germans these "Good Americans" have yet to acknowledge their culpability in passively abetting the hate campaign.
Surgeon General Koop was not asked to produce a report on AIDS until early 1986 a very tardy response to an epidemic that had infected 23,205 persons in five years, slightly less than half of whom had already died. Considering past interference and restraints put on him, the Surgeon General quite wisely kept the writing of the report to himself, with the input of a few close advisors, and most significantly he did it in his home where it would be secure, and not his government office.
The Surgeon General's Report on Acquired Immune Deficiency Syndrome was released in October 1986, to great acclaim from many, including the the medical profession and the press, and a wave of dismay from homophobic conservatives.
It was not until the invention of so-called "innocent victims," i.e. - middle class straight whites, that most "Good Americans" and their godly institutions began to change their attitudes, although even those "innocent" victims didn't get off to a good start either. Ryan White and his mother actually fared better than the three Ray brothers and their family in Florida.
BOOTSTRAPPING: PWA COALITION
Michael Callen, (photo right) a young man in his late twenties struggling with a modest singing career, became a so-called "AIDS Poster Boy" par excellence. Like my friend Bob Cecchi, Michael was diagnosed in the early days of the epidemic, and like Bob his illness impelled him to great things. Even if it was growing rapidly, the world of AIDS in the city was small enough in 1982 that it was not difficult to know and have heard of a large number of those gay men who were infected. Michael attended a support group at Beth Israel Hospital and one connected with GMHC, and I believe it was at the latter that he met Bob Cecchi.
He and a friend, Richard Berkowitz, were dissatisfied with these groups, whose focus was as support groups, and dropped out to form their own organization, Gay Men With AIDS. A group of gay New York men with AIDS decided to go to a 1983 gay and lesbian health conference in Denver, where they would have the chance to meet with men from San Francisco who had been doing their own organizing. My friend Bob was one of them, and the others were a roll call of the men I heard about all the time from him, and met at various times: Phil Lanzaratta, Richard Berkowitz, Michael Callen, Bill Burke, Artie Felsen, Tom Nasrallah and Mathew Sarner.
All the men with AIDS from various parts of the country were able to agree on a platform of ten principles, referred to as the Denver Principles from then on, in which they articulated an active role for AIDS patients in the political and medical goings-on around the epidemic. The preamble stated that there would be no more "AIDS victims" but Persons With AIDS (PWA for short.) This point captures the spirit and direction of what took place there. The plan was for a national organization of PWA's with local units. PWA-NY developed some friction with GMHC, though I no longer remember why. GMHC had developed some safe sex guidelines early on, one of which recommended "avoiding anal intercourse." Michael Callen, and his doctor Joseph Sonneband (a vocal activist physician) took strong public exception to this, pointing out that it was guilt-inducing and stupidly counter-productive when the real point should be getting people to use condoms for fucking. Quite right, of course. This may have been the source of the bad feelings.
By '85 when I joined GMHC as a Crisis Intervention Worker buddy, I think that PWA-NY had already become the PWA Coalition. By this time whatever friction had existed between the two organizations had evidently disappeared. Later on in our team meetings we always got news and material about the PWA Coalition, and giving information about the Coalition was part of the intake interview process. I can remember getting a copy of the PWA Coalition Newsline each month, but I can't remember whether they were passed out at our team meetings or if I just picked one up at the GMHC offices. It contained great material written by PWA's for PWA's, and I found it really helpful and morale-boosting for myself.
Out of its pages came the material for Surviving and Thriving with AIDS, which the Coalition published in 1988 a lot of powerful writing, some of it by Michael. The PWA Coalition was a real source of affirmation for PWA's and became an influential voice in the epidemic. Michael sometimes seemed to be everywhere: newspaper and magazine articles, TV interviews and even appearances before Congress. He was a nice-looking, intelligent young man (and white, which certainly helped too), which must have made it difficult for at least some white Americans to ignore him altogether. His career as an entertainer was a plus, as he was able to remain affable and unruffled while at the same time not backing off when put under pressure.
There is some irony in the fact that as a result of all this relentless AIDS work, his career as an entertainer got a shot in the arm. One time Michael chided Bob Cecchi, saying that he'd be better known if he tried to get on TV more often. Bob replied, "Yeah, but you want to sing. I don't even play the kazoo."
Many PWA's, including my friend James, worshipped the ground Michael Callen walked on, but he was not a plaster saint in my estimation. My few passing personal contacts with him left me with the impression that like many professional entertainers, he was always gauging the effect of his words and actions. And in his dealings out of the public eye, from what I heard, he was a savvy calculator and sometimes obdurate. These remarks, I realize, are quite in contrast to the sentimental cocoon his memory has been enshrouded in. But I feel that these other qualities must have been fairly strong components in his makeup, otherwise he never would have sustained his momentum nor accomplished as much as he did.
His infection, like Bob Cecchi's, took a decade to overwhelm him, but this was not the usual course of the disease in the Eighties; nevertheless, he didn't seem willing to regard his own experience as atypical. He was not inclined to temper his opinions, and I knew a few PWA's who quoted him as gospel when they might have benefited from regarding him and his some of his opinions with more objectivity. The membership and interests of the PWA Coalition and ACT UP sometimes overlapped. One of the staff members and several of the PWA volunteers I knew at Community Research Initiative felt intimidated and deeply anxious by spur-of-the-moment interviews initiated by Michael Callen when he dropped in, during which he questioned them on their political views regarding AIDS. At a time when things at CRI were not going well, and morale was low, Michael, who was a member of CRI's board, gave the impression of being more concerned with the ideological reliability of the staff. Some of the workers at CRI felt that these tactics were an "inquisition," and rumors were flying that the organization's funds had already been used to finance some ACT UP activities, rather than for its own needs.
The PWA Coalition which he helped create, and for which he worked for many years was a major source of empowerment for many PWA's in the city. Michael with The Flirtations, meanwhile, made two productions and they appeared very briefly in the movie Philadelphia (a thoroughly unrealistic, caramel-coated film about AIDS.) T.J. Myers - Teej - another of the group's members had been working in the Client Services Department of GMHC when I began volunteering there. Michael also had a solo career and rushed to complete an album before he died in California of AIDS-related causes in late 1993.
* * *
And others were grasping for that something, or several somethings, which would ward off the spectre AIDS like the rosemary and garlic and the cross which legend said kept vampires at bay.
The cult of Christian saints, crystals and amulets and New Age healing groups and philosophies were what I saw many guys resorting to in these years, and in my neighborhood I heard of a few embraced Santeria as their defense. I got the impression that the gay Christian and Jewish religious groups were flourishing, but I was never involved with them - except for one or two visits to Dignity (the gay Catholic group) with Henning.
SAINTS, TALISMANS AND CRYSTALS
Early in the
Eighties, when Miguel had been showing Bob and I his lesions, in the absence of
any cure he had placed his faith in St. Martin de Porres. With an earnestness
that I found heart-breaking he claimed to truly believe that the intervention of
this saint would heal him. Some turned to St. Roque, the saint invoked against
plague, and in Arara, the local botanica, a place which fascinated me, the shelf
space allotted to the large red votive candles with the image of San Expedito
the bestower of urgently needed blessings
was often empty.
Saint Roque Saint Expedito
One neighborhood guy I ran into occasionally collected so many religious medals, amulets and holy this and thats on a chain around his neck that he came to need a second one, and then another. A mutual friend observed that this fellow most certainly would not die of AIDS, but rather from a broken neck caused by all the talismanic luggage he had slung around it.
In the months after Robin's death (1984), when I was going to mass at Blessed Sacrament with Henning and his straight woman friend, I saw familiar gay faces in the congregation and several of the ushers I recognized from back in the days of the old Candlelight Lounge. I was really taken aback by a few of the guys, but then, no doubt, at least some of them were asking, "What's he doing here?" I don't recall any mention of AIDS in church, much less any mention of the venomous hatred that the epidemic was unleashing much, if not most, of it from religious quarters.
When a friend of mine breathed his last his roommate ran out of the room and came back with a box of "healing crystals," which he arranged across the head of the bed. I thought this was expecting a bit much of a bunch of pretty pebbles, but recalling some of my own past attempts to stop the Divine Will in its tracks, I maintained a respectful silence. This ritual produced no second Lazarus, but at least I couldn't be blamed for fucking things up with irreverence.
THE LOUISE HAY TAPES
A few years
into the epidemic, Bob Cecchi mentioned the "Louise Hay tapes," as if I should
know about them. I didn't, but I soon heard about them and her (photo
right) - often.
She was a
minister of the Church of Religious Science, and claimed that almost a decade
ago she had healed herself of vaginal cancer by releasing the resentment she
carried into adulthood after having been sexually abused as a child. Bob had
read one of her first books, and as AIDS spread her message was that AIDS too,
could be healed with love and forgiveness. She did not, however, claim
that her meditations and visualizations should take the place of medical
treatments, but rather that they were adjunctive to them. In California, I
heard, her in-person meetings drew large crowds of faithful followers. Bob
continued to read her books and listen to her tapes, and after joining GMHC as a
buddy I sometimes heard that other buddy's clients were interested in her.
After quite some time, though I don't recall when, Bob surprised me by expressing some reservations about Hay and the tapes. I gathered from him that at least some gay men were questioning whether her thought did not suggest that AIDS was a dessert of being gay, or at least of being promiscuous. Having only briefly listened to part of a tape and never having read any of her books, I hadn't a clue myself whether this might be the case. However, I did realize that in a climate where some Christians were trumpeting such things, gay men were not unwise to be chary. Bob, I know, put her stuff aside, though I don't know how widespread the objections he spoke to me about were among gay men. I continued to hear less and less of Hay and her tapes, and there was a point when they just went off my personal radar screen completely.
And there was also Marianne Williamson, the most prominent spokesperson for A Course in Miracles. ACIM is a 20th century teaching first published by Helen Schucman, who was a clinical psychologist and research psychologist who was a professor of medical psychology at Columbia University from 1958 to 1976, who claimed it was revealed to her by Jesus. It achieved a great deal of publicity in the 1980's. And I understood that its New York branch attracted many gay men, though in fact I knew of only two who had any active interest in it. [In 2019 Williamson was one of twenty persons vying to become the Democratic party's presidential candidate in the 2020 election.]
* * *
Later, toward the late Eighties, my own religious meanderings would take me in the direction of Buddhism, and there were usually a few gay men in the various Buddhist groups I visited - I had met Ludis with a friend at one. A short time later, at a talk given by two lamas on Tibetan medicine, I met the gay poet Allen Ginsburg, and there was a noticable number of gay men there. Gino and his boyfriend became involved in Nichiren Shoshu America (NSA), now called Soka Gakkai again, I believe this was the odd Buddhist organization that my friend Mike from Syracuse had been attracted to in the Seventies. There was a Buddhist meeting at the NYC gay community center. In San Francisco there was a hospice run by a gay Zen group that I used to contribute to, as well as other gay Buddhist groups. The Buddhist-oriented publications, Tricycle and Inquiring Mind, gave me the impression that there was more AIDS-related gay activity in American Buddhism than I actually encountered myself. And, John, a former neighborhood friend of mine and Boot Hill alumnus, surprised me when he joined a Zen Buddhist monastery in the Catskills. He died of AIDS a few years later, and a building at the monastery has been named after him. These Buddhist groups and congregations were all composed of American followers, but I never heard whether the conservative Asian immigrant population responded in a similar manner in their own ethnically-oriented Buddhist centers.
GOD'S LOVE WE DELIVER
One of the most esteemed groups founded in New York City in response to the AIDS epidemic was God's Love We Deliver. Though its client base never approached that of GMHC, it stood in very high repute for its work in providing prepared meals for those persons with AIDS who were unable to leave their homes or cook for themselves.
The organization came into being as a result of one small, personal event in May 1985.
Ganga Stone (photo left) was a volunteer delivering groceries to homebound AIDS patients in Manhattan. One of her deliveries was to Richard, a 32-year-old PWA. When she showed him her bag of groceries, the emaciated man groaned and pushed them away then ripped open a box of dry cereal and began stuffing it into his mouth. The woman was stunned as she watched the skeletal man, his face covered in Karposi's sarcoma lesions what could he do with the food she had brought him? It all needed to be prepared, and he was barely able to get to his bathroom when he had to.
"Death was in his face, and there was nothing I could do," Ganga Stone recalled later. "But meanwhile, he needed cooked food and that was doable." She went back down to the street and bought Richard food from a nearby deli.
After that day, Ganga Stone began cooking meals for AIDS patients in her own kitchen and delivering them by bicycle. As the demand grew beyond her capacity to cope with it, she approached restaurants to donate meals, or at least unsold prepared food they were going to throw out.
The childhood of Stone and her sister had been rough, and sometimes abusive. She had cared for her mother as she died of ALS (Lou Gehrig's Disease.) After mother's death in 1965, Stone plunged into a chaotic 60's "hippie" lifestyle, and by the early 70's was emerging with a discarded husband, a young son and an unpromising future. That changed when she became a devout follower of the Indian religious teacher, Muktananda. He gave her the name Ganga, referring both to the sacred River Ganges, and the goddess Ganga, who personifies it and is connected with the ideals of mercy, redemption and compassion. She spent two years at Muktananda's ashram near Bombay.
In 1987 a $90,000 gift from the Men's Fashion Association and a state grant provided the seed money to set up a kitchen. God's Love We Deliver moved into the kitchen of West Park Presbyterian Church at Amsterdam & 86th Street and delivered 50 meals per day. The prepared meals were left at neighborhood drop-off points gay bars being one, and volunteers picked them up and brought them to the homebound PWA's. Though not a gay organization, God's Love had plenty of gay volunteers (a couple of friends of mine among them), who for various reasons did not give their time to GMHC.
By 1991 the organization was delivering an average of 250 meals a day. Nine years after its beginning Ganga Stone was well-known as the charismatic founder and president of God's Love We Deliver, an organization by then with a $5.5 million annual budget, which was cooking and delivering more than 1,400 meals daily to AIDS patients throughout the New York City area.
One of these was my friend Charles P., who had been making a wearying (for him) trip up from the Village to eat lunch at the GMHC facilities. However, the anti-gay hostility of the straight clients there frightened and depressed him...he began skipping meals, and this along with his rapidly increasing debility caused him to connect with God's Love. The day before he died he declared to his friends that he wouldn't have made it as long as he had without the meals from God's Love.
To Gods Love's clients, the food was both physical sustenance and spiritual comfort. In a 1994 article People magazine quoted Miel Saan, 61, an HIV-positive woman, "I really appreciate it, you just don't know." She lived alone and was too weak to cook, and she said, "I'd go days without eating."
In the same article Ganga Stone said, "The primary thing in my life is my work and my worship which are the same.
Together with
GMHC and the PWA Coalition, God's Love We Deliver was one of the sea walls
against the waves of hate generated by evangelical Christian groups and
conservative politicians against people with AIDS, most especially gay people.
"INNOCENT VICTIMS"
Thanks to the Reagan administration's very deep antipathy toward gays attested to by C. Everett Koop, the then Surgeon General most Americans remained uninformed about HIV infection even as the epidemic had steadily increased. Not surprisingly fear and confusion grew as religious hate-mongers and homophobic politicians and even racist loonies filled the vacuum. The prevalence of fear and hate had not been as great in American life since the early days of racial desegregation and the black civil rights campaigns.
Ryan White, a 13-year-old hemophiliac living in Kokomo, Indiana (photo below, right), contracted pneumonia and had surgery to remove part of his left lung in December 1984. After the surgery, his doctors informed his parents that he had AIDS, probably from blood products used to treat his disease.
As soon as his condition became known a tidal wave of ignorance, fear and hatred swept over the boy and his family. When he was sufficiently recovered in the spring of 1985 his mother, Jeanne, was told that he could not even come to school for a visit. The overwhelming sentiment was that he should not be allowed to return to school because he had AIDS. When people claimed there were no health guideline, the state Department of Health set up guidelines far more restrictive than needed and said that it would be safe for him to attend school. However, public sentiment in his hometown was almost totally against Ryan and the fight continued to keep him out of school. The school superintendent denied him permission to attend school.
In August '85 parents of school children signed 117 forms threatening a civil suit if Ryan was allowed to enter school. In the middle of the same month about fifty teachers voted to support a decision to keep the boy out of school. The town newspaper supported his attendance at school, but the town's citizens were virtually united against him and continued their battle to isolate him.
In September Ryan's picture first appeared in USA Today Newsmakers. Straight America couldn't help but notice. But in New York City's borough of Queens parents, egged on my totally ignorant political demagogues, were rallying to keep another child out of primary school.
In October Ryan's school at an administrative hearing reaffirmed its decision that the boy could not attend school. However, the state Board of Education said that he could attend, except when seriously ill, and shortly thereafter it ordered that he be allowed to attend. The school officials decided to fight the order, and the School Board voted unanimously to keep Ryan out of the school.
In early February (1986) Dr. Alan Adler, Howard County Health Officer, examined Ryan and certified him fit to attend class. Ryan and his mother, Jeanne, traveled with Ryans friend Heath Brown and attorney Charles Vaughan Sr. to New York City to appear on the Today Show and CBS Morning News. Now straight America was getting the Kokomo events in its face.
A court ruling allowed Ryan to return to school for the first time in 14 months, but a deluded 151 of 360 students stayed home and seven desperately transferred to other schools.
At the beginning of March an ad hoc group, Concerned Citizens and Parents of Western School, along with an inflammatory Dick Bronson, a local radio personality, held an auction at Western Middle School gymnasium to raise money to keep Ryan out of the school. Charlie Cropper and Dick Bronson were hosts of the local WWKI-FMs Male Call morning call-in show. Calls to the show many levelling personal attacks at Ryan's mother as well as Cropper and Bronson's comments, deeply upset the family.
I not only oppose him going to school, I oppose him going out in public. I think he should be quarantined, and Ive said it on the air many times," Dick Bronson of WWKI-FM told Indianapolis Monthly magazine in July 1986.
The Whites obtained a court order allowing Ryan to return to the classroom.
An even more frightening incident occurred when someone fired a bullet into the family's home. The White's were church-going Christians, but "even at church, people would not shake my hand," the boy said. This lack of acceptance, even in church, was another deep blow to the Whites. In school Ryan was shunned, his locker was trashed, students moved their desks away from him and most telling, his books were scrawled with anti-gay slurs.
He was not gay, but as far as many ignorant Americans were concerned AIDS meant he must be.
The ugly treatment that Ryan White was enduring came to and end when the White family was able to move out of Kokomo in May 1987, thanks to a gift from Elton John, which allowed them to get a house. (Ryan's mother insisted on considering John's gift a loan, and paid it back to him.) Considering the gunshot attack on their home and what was to occur in Arcadia, Florida a few months later they were extremely wise to depart. Ryan's appearances on television had aroused national interest, and ABC-TV decided to make a film, The Ryan White Story, and it was payment for the rights that allowed the family an even greater financial cushion for fleeing their situation.
They moved to Cicero, Indiana, where the parents and students made a concerted effort to learn about AIDS in order to not repeat what had occurred in Kokomo. After the family arrived the student body president, who lived three doors down from the White's new home, came to the house to tell Ryan that he would be welcomed in school. Mrs. White gave full credit to the parents for informing themselves about AIDS and making sure that their children were educated about it. Ryan was accepted by his fellow students, and he began to live the life of an average teenager again.
THE THREE RAY CHILDREN: COMPASSION FLORIDA STYLE
But in Arcadia, Florida history was repeating itself, only at a worse level.
Three young hemophiliac brothers Ray, Robert and Randy Ray, ages 10, 9 and 8 were diagnosed with HIV in 1986. Their county school board refused to let them attend school. The boys' parents sued for the right of their children to attend school, and were victorious in Federal court. In the week following the verdict the Rays were the target of bomb and death threats, and the school was boycotted because the boys were returning. Increasingly fearful, the Rays and their children did not sleep in their own home, leaving it in the care of a relative. On August 29th, 1987, a week after the court decision, the house was burned down, sending the boys' uncle to the hospital for smoke inhalation. As relatives were sorting through the debris the next day, a car sped by and its occupants shouted: "Get out of Arcadia! Get out of town, Rays!"
The family fled their hometown. Town authorities were never able to determine the cause of the fire that destroyed the Ray home.
Less than two years after Floridians ignored this travesty, they would rally to the cause of another alleged "innocent victim," Kimberly Bergalis.
In the meantime, as accounts of Ryan Whites ordeal began to appear in the press and on television, he received thousands of letters of support and crucially in celebrity-drunk American society the attention of film stars, singers and athletes, in addition to major TV newscasters. He had been deeply hurt by the treatment he received in his former hometown, and by the continued reactions of fear and contempt against people with AIDS. He refused to blame gay people for his medical predicament, nor would he condemn them. He determined to take advantage of his unwished for fame to educate the public about HIV and AIDS, and to show that it was not dangerous to have casual contact with HIV infected people, and that the disease was not limited to gay men and drug addicts.
He continued to accept invitations to appear on television shows and to give interviews, and he appeared in person at events designed to make the public aware of the emotional suffering that was caused to HIV positive people by hysteria and ignorance. His was an intelligent youngster, with a winning personality and many Americans came to love him. As he became the AIDS poster child, his being outside the early categories of those infected by AIDS allowed the public to embrace a new category of "innocent victims." This was a label Ryan White himself repudiated.
After years of AIDS being a propaganda tool for the wolf pack of televangelists and Christian evangelicals, Ryan White through the publicity he received was educating the public - as the national government should have been doing. (Of course, characterizing him as an "innocent victim" allowed some Americans to continue to hate those who by default were confirmed as deserving victims.)
In March of '88 Ryan testified before the President's Commission on AIDS, describing his experience with bigotry as well as the financial difficulties his family had experienced as a result of his illness. In the same year a brochure summarizing Surgeon General Koop's report was mailed to 107 million American households. In April of the following year, at a gathering in Sarasota, the Surgeon General honored the White family and the Ray family, and others who had suffered not just from the infection of HIV, but from the prejudice and abuse that their infection provoked in those around them. He later said:
"This was probably the best I had ever felt during the epidemic of AIDS, and my part in trying to educate the public about it. All the reasons for my being there were sad, and essentially inexcusable, but I was with the people who turned situations around, and made it possible for us to hold our heads up, as Americans with integrity."
Ryan White, an excellent student who had his sights set on beginning college, died on April 8, 1990 at age 18. His funeral three days later in Cicero was carried live by CNN, CBS, NBC, and ABC. More than 1,500 friends and neighbors attended in addition to some of those national celebrities with whom Ryan had formed friendships and hundreds more mourners stood outside in the rain through the service.
Shortly after his death, Ryan White's mother went to Washington to speak to members of Congress on behalf of people with AIDS. She spoke to 23 representatives. Jesse Helms of North Carolina, however, refused to speak to her - even when she was alone with him in an elevator.
A few months after the young man's death, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act. The Act aims to improve the quality of care for low-income or uninsured individuals and families with HIV and AIDS who do not have access to care.
THE VIRGIN AND THE DEMON FAGGOT
In 1989 the year before Ryan White's death Robert Montgomery, a West Palm Beach medical malpractice lawyer, took his friend Dr. Sanford Kuvin, a wealthy Palm Beach tropical and infectious disease specialist, to visit his client Kimberly Bergalis. After two inconclusive HIV tests, a third had come out positive, and the twenty-one year-old Bergalis claimed she must have been infected by her dentist in December 1987. She had wished to remain anonymous, but her family felt that she, and they, deserved more than suffering in silence.
According to the lawyer Dr. Kuvin had said that "She was totally pristine. She was a virgin. She had never received any blood products. She had never used intravenous drugs." Her "pristine" state was deeply important to her family, who were very conservative Roman Catholics. "Her sickness would have been easier to accept if she'd been a slut or a drug user," George Bergalis said of his daughter in an interview with People magazine later. "But she had done everything right."
Four weeks after her one and only appointment with Dr. David Acer for the extraction of two teeth, Bergalis had come down with a case of pharyngitis. This reaction is consistent with an acute retroviral syndrome following HIV infection. However, her symptoms did not include fever, rash, or generalized lymphadenopathy, which have been described in most cases of acute retroviral syndrome. Also noteworthy was the fact that the time between her dental procedure and the development of AIDS (24 months) was short; only 1% of infected homosexual/bisexual men and 5% of infected transfusion recipients developed AIDS within two years of infection.
Dr. Acer (who identified himself as bisexual) had tested positive for HIV in late 1986 and was diagnosed with AIDS in September 1987, which was three months before he performed the invasive dental procedure on Kimberly Bergalis. Acer closed his practice due to two debilitating opportunistic infections in July 1989, several months before Bergalis was diagnosed with AIDS. He was contacted in March 1990 by Dr. Carol Ciesielski, an epidemiologist from the Centers for Disease Control, who informed him of Bergalis's infection. He cooperated with the CDC, and agreed without protest to give them a blood sample, certain that he was not the source of her infection. The CDC reached the conclusion that Acer was the source of the infection and released the news without naming him or the patient.
In late August Florida state health officials met with Dr. Acer to ask his permission to notify his former patients and offer them HIV tests. He was clearly on death's doorstep, and in a matter of days pitched into an extreme medical crisis. Four days before he died he wrote a letter which was mailed to two thousand of his former patients notifying them of his infection. He assured them that he had used all the proper sterilization procedures, but encouraged them to have an HIV test. An advertisement was also placed local papers. He died in September 1990.
Kimberly Bergalis's virginity was of very great importance to the family, and it became her badge of distinction in the AIDS epidemic. When the Centers for Disease Control (CDC) first reported that "Patient A" (i.e. Kimberly Bergalis) had probably been infected by her dentist, her comment was, "Thank God, now everybody will believe I'm a good girl." Her mother was a very strict Catholic with a staunch commitment to traditionally conservative Church values, and these weighed heavily in the family's reaction to their daughter's tragedy.
Later, in 1991, Ms. Bergalis declared in a letter to Florida health officials: "Whom do I blame? Do I blame myself? I sure don't. I never used i.v. drugs, never slept with anyone, never had a blood transfusion. I blame Dr. Acer and every one of you bastards.... You are all as guilty as he was."
Stories about Bergalis appeared on the cover of People and USA Today (which ran an additional story about medical transmission of AIDS titled "Guarding the Innocent"). George Bergalis and Dr. Kuvin apeared on many major television talk shows, including Today, Good Morning America and Crossfire. Unlike Ryan White, who had died in 1990, Kemberly Bergalis did not become a spokesman for fellow AIDS sufferers. She directed all of her failing energy against the majority of people with AIDs and those she considered their allies.
Her case attracted the attention of William Dannemeyer, a California congressional representative. The ultra-conservative Dannemeyer was the author of Shadow on the Land, a book that denounced the baneful influence of homosexuals on American life and went on to argue that homosexuality is a curable psychological illness. Dannemeyer was also known for his bizarre unscientific claims about HIV, including the notion that "spores" emitted by AIDS victims could cause birth defects (1985) and that HIV could be transmitted by deep kissing (1988). He distinguished between homosexuals and "decent people who acquired the virus innocently," and he had characterized AIDS as a "privileged disease" on which entirely too much money was being spent.
An investigation by the Centers for Disease Control (CDC) found that five patients who had visited Dr. Acer might have been infected with HIV by him though how this happened it was unable to establish. Millions upon millions of Americans had been subject to invasive medical procedures in the years just prior to the emergence of the epidemic and since its appearance, but the small cluster of Dr. Acer's patients were the only ones for whom it was established that a medical or dental care provider had apparently infected them with the HIV retrovirus.
Rep. Dannemeyer, however, was readying a bill for Congress that had as its major feature a requirement that all doctors and dentists to be tested for HIV, and would have prohibited those infected from performing invasive surgical procedures without first informing their patients and obtaining written consent. The bill would also require, among other things, the screening of patients for AIDS.
With the exception of Dr. Sanford Kuvin, (the physician who had certified Ms. Bergalis's "pristine" status for her lawyer and who helped Dannemeyer's staff draft the bill the medical profession viewed it as ill-conceived. (Kuvin himself was a retired physician, no longer a board certified internist. Though he had never been certified as a specialist in infectious diseases, he did claim to be a "global authority" on the dangers of infection in health care settings.) The opinion of C. Everett Koop, the former surgeon general was that, "The Florida case is too bizarre to be helpful in making public policy." Though there was no convincing evidence that it would save a single life, Dannemeyer's bill it was estimated would cost as much as $1 billion, though Dannemeyer himself said he had no idea what the testing program would cost.
Kimberly Bergalis's (photo left) plight and her publicly reiterated virtue fitted Dannemeyer's prototype of "decent people," and of an innocent victim rather than a guilty one. Her name was in the title of the proposed legislation requiring health care workers to be HIV tested. At the height of the media interest in her case, Dannemeyer invited the Bergalis family to testify in favor of the bill before the House Health and Environment subcommittee. Though by this time Kimberly Bergalis could not walk and could barely talk, her dying wish, according to her parents, was to come to Washington to speak in favor of Dannemeyer's proposed legislation. The 70-pound patient also wished to make what was certain to be a harrowing journey by train a twenty hour journey. She and her mother took the trip, accompanied by dozens of reporters and photographers, on September 24, 1991.
Ms. Bergalis's testimony was broadcast in full by all three networks and reported on the front page of most major newspapers. And she was followed by her father. Though Ms. Bergalis's appearance was typical of a PWA in terminal decline, the committee members were obviously aghast a clear indication that they must have been seeing their first dying AIDS patient even though the epidemic had been raging for a decade. In the end the Republicans on the committee were unable to do no more than make a few non-probative remarks.
The redoutable Dr. Kuvin had also come to testify in favor of the bill. The physician had hoped to take the train to Washington to be with Kimberly on her final trip, but had flown instead in order not to appear on Oprah with her. He testified before the committee that no precautions, however painstaking, could prevent future Kimberlys from being infected if HIV-infected doctors and dentists continued to perform invasive procedures. [Despite the continued absence of verified cases of HIV transmission from health care workers to patients, Dr. Kuvin has remained an unswerving believer in the measures he helped draft for Dannemeyer.]
Two days before Bergalis's death Dannemeyer's bill, the Kimberly Bergalis Patient and Health Provider Protection Act failed to get approval.
Kimberly Bergalis died on December 8th or 9th, 1991. (Obituary articles are not consistent.) She was buried in the Lithuanian Catholic Cemetery in Tamaqua, Pa., her original hometown. The city of Fort Pierce, FL dedicated a lovely seaside boardwalk park to her memory.
While young Ryan White's courage and testimony on behalf of those with HIV/AIDS had impressed and educated many Americans who had previously ignored the epidemic, he had not been an entirely satisfactory "innocent victim" for some Americans. First, he disliked the label and repudiated it; second, he had spoken out for all persons infected with HIV, and had refused to vilify gay men, saying at one point that God did not hate them but loved them as He loved others. These attitudes did not go down well with religious and social conservatives in America. They were on the lookout for a more innocent "innocent victim."
Kimberly Bergalis, on the other hand, was the consummate "innocent victim": a young female a virgin and martyred by a homosexual man to boot. Her insistently publicized sexual purity, and the fact that she had aggressively disassociated herself from most of those infected in the epidemic made her almost literally a heaven-sent "innocent victim." She had been able to draw the wholehearted attention and affection of conservative Americans. Even Senator Jesse Helms had found in her a victim whose standard he could bear, unlike the active disdain he demonstrated for the White family. And if she did die on December 8th, as some of her obituaries state, then she died on the date that the Catholic church celebrates the Immaculate Conception of the Blessed Virgin Mary, which would have held a special poignancy for her family and other Catholics.
Dr. David Acer remained the only case of a health care worker infecting a patient. The CDC investigators had compared the DNA sequencing from a part of the retrovirus present in the patients with a sample that Dr. Acer had given them before his death and found a close similarity. All the patients denied having sexual relations with Dr. Acer, and none had had a general anesthetic, which ruled out the possibility of rape. (David Acer has usually been characterized as "gay," however the New York Times has called him "bisexual.") Thus, the only possible route of infection from Acer would have to have been during a dental procedure. The CDC was unable to determine how he spread his infection to six patients; one theory was that he did it intentionally, another that he did not sterilize all his instruments or use gloves, and another that he injured himself and bled while treating these particular patients. However, the infected patients described him as gloved and masked, and recalled no unusual incidents during their treatment.
Ms. Bergalis's medical malpractice attorney, Robert Montgomery (photo left) , represented some of the other patients as well, and he won large settlements for all of them from Dr. Acer's estate and insurance company, as well as Cigna, the medical plan in which the dentist was a participating member. During these proceedings large amounts of medical records, insurance documents and medical and witness testimony were collected. Some of it was available to the CDC at the time its medical experts made their investigation before reaching the conclusion that Acer was the source of their infection.
Two years after the death of Bergalis the rigor and credibility of every aspect of the study of Dr. Acer's supposed victim patients was being challenged by medical professionals. And the virgin victim, who represented the crusade based on Acer's never-identified culpability, was discovered to have been no such thing.
By 1994 investigation of the evidence available to the CDC at the time of their first investigation, and of later evidence cast a wider and much brighter light and on the lives of the patients and their contacts with David Acer. Some documents medical records, legal depositions, scientific analyses, and more also contained information pertinent to the CDC's epidemiologic field work and molecular analyses, information that had never before been made public. The results of this investigation was presented in Lear's Magazine, The New York Times and a 60 Minutes television broadcast.
The scenario that Kimberly Bergalis and the other infected patients had led lives of such virtue and care as to preclude infection by what are termed "risky behaviors" went out the window. And with it, of course, their "innocent victim" status. This absolutely enraged some sections of the public, but it was, after all, Kimberly Bergalis and her family, their attorney and her well-wishers and opportunist politicians who made her sexual virtue an issue. It need never have been, and the question of Dr. Acer's possible culpability would have remained just as pertinent.
Kimberly Bergalis (Patient A) had been ordered by the court (as part of the her legal action) to have a gynecological examination. The physical examination found that her hymen was consistent with having engaged in sexual intercourse. In addition, the gynecologist found genital lesions, and specimens were taken from Patient A's vagina and anus, and she tested positive for human papillomavirus type 18, a sexually transmitted pathogen. Both of her known former boyfriends, however, tested HIV negative.
Internal field notes written by Dr. C.A. Ciesielski, a major CDC investigator, indicated that she had been skeptical that Ms. Bergalis (Patient A) was being honest, and her notes stated that Kimberly Bergalis may have feared "serious negative impact if her mother believed she had participated in risky behaviors." The CDC acknowledged in its final report that "she is concerned that if she tells us her risk (factors), her mother would find out ..."; a report from her therapist noted that Kimberly said her mother was "hypercritical and rejects all of her daughters."
Patient E, a woman, learned that she was positive for HIV in 1988. She confirmed to the author of the magazine articles in an interview that at the time of diagnosis, she believed she had been infected by her boyfriend, who had known risk factors for HIV. But six months after the dental case became public, she had come forward and told investigators that the boyfriend had actually tested negative for HIV when she had first tested positive, and that he had tested positive at a later time. However, her 1992 legal deposition testimony did not concur with the information presented by the CDC as to when patient E and her boyfriend learned of their infections
Patient C was a male who had denied that he had ever had homosexual contact. The CDC team, however, reported subsequently that they had identified a male sexual partner who had tested negative for HIV. The CDC team also disclosed that Patient C had named 14 female sexual partners he had had since 1978, of which only 9 had been located and tested. Outside reportorial investigation received information that this patient had had anal intercourse on at least six occasions with another man.
Patient G, another male, indicated to the CDC that he had used intravenous drugs just once in 1973, and he reported having had only two female sexual partners since 1986, both of whom tested negative for HIV. An acquaintance of this patient gave sworn deposition testimony that Patient G had frequented a local crack house several times a week in the mid-1980s, and that he had traded crack for sex. The witness also deposed that this patient had had unprotected intercourse as many as 50 times with a prostitute who later died of AIDS.
Patient B, another woman, presented many anomalies. When she had tested positive for HIV she had indicated on two forms that she had been a blood recipient in the ten-year period between the mid-Seventies and mid-Eighties, a period in which she had had major surgeries. But her hospital records did not confirm that she had received blood. In a legal deposition after the CDC investigation this patient named a man with whom she had had an extra-marital affair in the late 70's. In a 1993 interview the man named by Patient B said that he had never been tested for HIV nor had he been contacted by the CDC - he also denied ever having had sexual relations with Patient B. If Patient B had told the CDC investigators about this affair it raised the question of their failure to follow up on this sexual contact; on the other hand, it also raised the question of whether she had told the CDC of his existence.
The final patient, a teenage woman, claimed that she had had multiple visits to Dr. Acer in the late 80's, a time when other family members were using his practice. However, after Dr. Acer made his infection known three other family members were tested for HIV (all reporting negative), but this patient did not have a test. (The young woman only discovered her HIV status when she was tested upon applying to enter a branch of the armed services.) The family had submitted multiple dental claims to the insurer for treatments by Dr. Acer, but the only submission for this family member was for a dental cleaning by a hygienist, and the claim form coded this as the patient's first visit. It was the only claim filed for her. Dr. Harold Jaffe, (photo above) director for the Centers for Disease Control's division concerned with the HIV/AIDS epidemic has been quoted in the New York Times as saying,"...her lack of more invasive procedures makes the whole case more mysterious."
Even the inexplicable infection of a patient who only had her teeth cleaned by a hygienist, however, did not remove Dr. Acer's office as the most likely source of the his six patients' infection. As Dr. Jaffe observed it was only to make the mystery even more mysterious.
Nevertheless, other more serious questions were raised. The DNA sequencing work that the CDC used to show that the dentist and his patients had similar strains of HIV, though it had been validated by two doctors at the University of Texas, was seriously called into question. The principal issue at first was whether the CDC was pursuing a reliable methodology as matching the AIDS DNA of patients was new territory and after the study results were published, some medical experts were asking, given the rapid mutation of strains of HIV in a patient's body, what HIV strain was being compared, as evidently only a single one was investigated. Critics in the medical profession, including some at the University of Florida, claimed to have found other persons in the local community with no connection to either Acer or his patients and these, nevertheless, were infected with similar strains of HIV. A further objection was raised that no independent laboratory had ever been given a sample of Acer's blood with which to make comparative tests.
More disturbing was the fact that one of the CDC's own collaborators has reported on data that indicate the possibility of contamination among the controls used by the CDC in its dental study. John Witte, a State of Florida officer for disease control wrote to the CDC that, "The evidence of transmission is scientifically inconclusive."
The CDC angrily resorted to a stonewalling defense, and never proceeded to follow up questioned areas of their investigation with more research.
Other "innocent victims" cropped up overwhelmingly white persons who had sometime in the past received blood products contaminated with the HIV retrovirus. The publicity that attended Ryan White's troubles had helped educate the American public, as did the efforts of Surgeon General Koop when he was finally allowed to do his job. But while Americans became better educated about the epidemiological aspects of AIDS, a clear-cut distinction remained in the public mind about persons infected with HIV. Most Americans, as far I could see, continued to reserve their concern and their sympathies for the so-called "innocent victims."
ACT UP AND LARRY KRAMER
From '87 '89 I took care of three sick friends in a row, which meant that most of my news about the ACT UP organization in its heyday came from the papers or the Internet. It wasn't until the early mid-90's that I met B.L. at the gay and lesbian community center, who had been active as a student in the black civil rights movement and had later had joined ACT UP in its early days.
ACT UP was an activist action group with a self-consciously anarchist tone that started in March of 1987 after a typically fiery speech at the community center by Larry Kramer. According to one ACT UP member, on that night Kramer was actually a substitute speaker for someone who couldn't show, and he ended up speaking before a group of mostly men, many of whom had already been meeting and in some cases demonstrating in the cause of AIDS. It was a group of men already primed, and Kramer's speech galvanized them.
When the other co-founders of GMHC had accepted his resignation it had devastated Kramer. In an interview in New Yorker magazine he described a grotesquely humiliating low point that occurred somewhat later.
"My lowest moment was at a get-together at a gay bar of all the G.M.H.C. volunteers. It was a social thing at a place called Uncle Charlie's South. I knew the d.j. I got myself into his booth and I took the microphone. I said, `This is Larry Kramer. I started this organization and I want to return and they won't let me and you must make them take me back.' I was screaming. I said they were cowards.
"It went down like a ton of lead. People looked at me like I was pathetic. That was when I got bitter. It seemed to me that everybody was just lining up to die. Rodger [McFarlane] maintains it was my subconscious talking because I wanted to go away and write 'The Normal Heart.' But I should have kept my power base. I went from coming home and my answering machine had fifty messages to coming home and there was nothing. Before, people listened to my anger because I was Larry Kramer of G.M.H.C. Then, in one day, I was just nobody."
Kramer recouped the power base he lamented losing when his play The Normal Heart opened at the Public Theater in '85. It was an instant success, praised as a searing drama, though it was larded with awkward moments of preachiness not well integrated into the play. However, it was hailed as a powerful political work. But for those familiar GMHC and Kramer's role in it the play was also Kramer giving the finger to his former comrades in a retelling of that organization's early days with the Kramer character a hero surrounded by enemies and weaklings. I was thrilled with the play because now there was a successful play about AIDS, and I thought it would draw more attention to the crisis. But as a stage drama I thought it was overblown and jagged. (Several years later Tony Kurshner would write Angels in America, a magnificent epic play about the AIDS plague and a beautiful piece of theater which opened in NYC in 1993.)
The group that formed ACT UP at a meeting subsequent to Kramer's speech included men from GMHC who were disappointed that it did not engage in more aggressive political work, members of the PWA Coalition, as well as people from the SILENCE=DEATH Project and a group called the Lavender Hill Mob.
The new group appeared in print that same month when the New York Native published the headline "Kramer, Mob, and others call for traffic blockade."
On March 24th the group hit Wall Street and invaded the New York Stock Exchange to protest against the exorbitant pricing of the new AIDS drug AZT (Acyclovir.) A year's treatment would cost about $10,000, and yet the drug had been developed in the 60's, with government funding in part. ACT UP had hit the streets running, and for several years it would effectively kick the right asses....when it wasn't bad-mouthing GMHC.
The day before the ACT UP demonstration an article by Larry Kramer had appeared on the Op/Ed page of the Times pointing out the issues that concerned the organization identifying the Food and Drug Administration as a major roadblock in finding effective treatment for AIDS. For the first years of its existence Kramer was its most visible and vocal member, and it sometimes seemed that he was the organization. But then this is how he had seen himself vis-a-vis GMHC. However, a good lead article in New York Magazine sometime in the late Eighties, I believe, took a sensitive look at the organization and other leading members. (Unfortunately I have been unable to find the date of this issue.)
Other
major actions followed this the General Post Office, Cosmopolitan magazine,
the National Institutes of Health in D.C. and ACT UP chapters appeared in
other U.S. cities and in Europe. Soon the city was plastered with the now
famous SILENCE=DEATH posters.
Some gay people were put off by ACT UP's tactics I wasn't. But the NY group/Kramer had a particular bias against GMHC, and the sniping and denigration of that organization set off a verbal conflict that never should have happened. And it was, and remains, my impression that this kept a good number of NYC gay men from being more supportive of ACT UP: the facts were that GMHC was helping thousands of gay (and straight) PWA's, regardless of whether one wished to see more and different things done in the war against AIDS or not. ACT UP and Kramer ignored this.
But if GMHC had decided to take a fiercely activist role, such as ACT UP did, I have no doubts whatsoever that many, many fewer PWA's would have found the help they needed to live better, and die better if it came to that. And there were enough people who wanted to act in that other role, or ACT UP wouldn't have sustained itself. So what the fuck was the problem? One guess in my opinion.
A massive demonstration in front of and inside St. Patrick's cathedral on December 10, 1989, in conjunction with WHAM a women's health group, was impressive in numbers, and glorious in that it confronted Cardinal O'Conner literally on his episcopal throne (photo right). But with the help of one, or perhaps several, of its members, ACT UP managed to snatch defeat from the jaws of victory. One member, at least, inside the cathedral defiled the Eucharistic wafer, which Catholic belief considers to be the actual body and blood of Jesus Christ.
New York had been bedeviled by recent repeated acts of desecration of Jewish cemeteries and religious buildings. And this act primed the city's collective voice to respond to sacrilege with almost total condemnation of the entire demonstration by religious leaders of all faiths in the city, as well as most politicians and public official and the press. ACT UP quickly tried to distance itself from this specific act, blaming it on individuals acting on their own impulse. But it was a public relations disaster, one which eroded what I thought was a growing sympathy and respect for ACT UP in New York City, and it unfortunately convinced some gay men that ACT UP = fuck-up.
The clash with the NIH in Washington, on the other hand, was a major victory for ACT UP, and what I would consider the greatest achievement of Larry Kramer's public life. Dr. Anthony Fauci, a major figure in the NIH, had an endurance that few of Kramer's targets did; he not only took the vituperation, he listened. Convinced of the rightness of many of Kramer's and ACT UP's charges and demands, he essentially opened the door and invited them in. Fauci said in the New Yorker story, "In American medicine, there are two eras: "Before Larry and after Larry.'' Dr. Fauci summarized: "Before AIDS and before ACT UP, all experimental medical decisions were made by physicians. Larry, by assuring consumer input to the F.D.A., put us on the defensive at the N.I.H. He put Congress on the defensive over appropriations. ACT UP put medical treatment in the hands of the patients. And that is the way it ought to be.''
However, after the success with NIH the New York organization began to fracture, and by the early Nineties once again Kramer departed unhappily from a second organization he had helped found. ACT UP in New York disappeared from the media spotlight, and declined considerably and rapidly on the gay scene as well. My acquaintance, Brad L., who had been with ACT UP in its early glory days, characterized it caustically in the mid-90's as "The place where baby dykes get their sergeant stripes."
ACT-UP was the putative progenitor of Queer Nation, an activist group founded in 1990. But this new group thought ACT UP was AIDS obsessed. It gave AIDS a wide berth in favor of kiss-ins.
Larry Kramer has surfaced now and again since those days, like one of those Icelandic volcanoes struggling to emerge from the icy sea, boiling the water and raising clouds of scalding steam. His HIV infection has not, he says, had a direct major impact on his health, but he has needed a liver transplant, and his angry public pronouncements and interviews are scored with despair. Since the Nineties he has come to sound more and more like a gay Savonarola.
His most newsworthy moment was a
major public row with Barbara Streisand over filming of his play The Normal Heart, in which he claims that she had seriously cut the character representing him in order to considerable expand the role of the female doctor, which Streisand intended to play. Two giant egos playing bumper cars.A COURSE IN MIRACLES
In the late 80's I began to hear about something called A Course in Miracles (ACIM) which was, from what I gathered, a reinterpretation/revision of the New Testament. But by that time theism, including Christianity, was a spiritual dead horse for me. My work offices had moved down to Baruch College by now, and sometimes to kill time on my lunch hour I would browse in Weiser's, an old established bookstore on 24th and Lexington devoted to the occult, New Age, Eastern religions, Kabbala, channeled revelations, etc, etc., as well as being purveyors of crystals, of course, various statues and pictures, and some of the foulest smelling Indian incense that I have ever survived.
But I did buy a book there from time to time my one Ouspensky volume, two or three by Maurice Nicoll, and later the Buddhist book by Walpola Rahula. I remember picking up ACIM a couple/three times and flicking through it. A non-starter for me, though it seemed like I heard it mentioned more often along with Marianne Williamson, whom I supposed (incorrectly) was the recipient of what was evidently a divine revelation. When I became friends with James, I noticed that he had a copy of the book in his apartment. As I hadn't been interested, much less enthused, about the book I thought it was probably best not to start a conversation with him about it in case he was. (A decision that was pretty miraculous in itself.) In any case, he evidently knew and had recently met other people, most of them of them gay men with AIDS, who found the book helpful.
However, several times over the following months as we became friends when James was hit with a terrible crisis he would grab the book and start reading in a desperate attempt to anchor himself. And at these moments he would sometimes break down in tears. So...I thought maybe I would pick up a copy and get better acquainted with ACIM in the event he wanted to talk to me about it. I was definitely not inclined to try to undermine his interest in it; and I was calculating quite frankly to unearth some nuggets that I could hand back to him as reassurance in spite of my own lack of interest.
The first thing I learned was that Williamson (photo left) was not the one who received the revelations of A Course in Miracles, that person was Helen Schucman, a research psychologist at NYC's Columbia Presbyterian Hospital who had a Jewish background, and who began hearing a "soundless voice" in the late Sixties which dictated to her a massive amount of material reinterpreting/revising the New Testament "good news." Evidently the news had not been all that good the first time around. The message was very complex, but it took a decidedly Gnostic turn in emphasizing the everyday world is not the creation of God, but an illusory evil created by the guilt and fear of men...forgiveness and love will open human beings to the real and perfect world of God. Williamson, a glamorous New Age lecturer, picked up on ACIM in the Eighties, and became its successful standard bearer.
I bought a copy, and before long was mind-boggled (to put it mildly) before the ponderous mass of what was truly a scripture. Whether my original motivation in regard to James had been well-intentioned or presumptuous quickly became beside the point, the stupefying complexity of the material made the idea of plucking out juicy, reassuring word-bites to toss at him ridiculous. There was the additional problem that much of the text read as if it had been ghosted by Khalil Gibran of The Prophet fame, which made it as difficult to digest as a forty pound slice of Zabar's cheese cake.
However, the news of the illusory nature of world and the evil in it, and the promise of freedom from it certainly would have had an appeal to some gay PWA's especially so in light of the Evangelical Christian salvos of sin and damnation aimed at gay men, and the tardy and timid voices of support from mainstream Christians. And Williamson was not reluctant to address the pertinence of ACIM to illness, including AIDS.
When James's father arrived to stay with him in February '89, one of the bonds that developed between them was attendance at a Sunday church service. I got to know James's father, and I doubt he would have been attracted to or inclined to cope with A Course in Miracles, and after a couple of Sundays of church-going the two of them found a church which seemed to satisfy and reassure James. ACIM disappeared from his life, however, I continued to hear of it in gay contexts and the Manhattan Center for Living founded by Williamson prospered.
A few years later, when Charles had been intimidated by the homophobia at the GMHC lunches, he asked me to go with him to a meeting at an organization called Friends in Deed. It had been founded around 1990 when there was a rift in the Marianne Williamson's Manhattan Center for Living between those who people who were focused on service to persons with AIDS, and Williamson and those more attached to her mystical message. Cy (Cynthia) O'Neal, who had been instrumental in securing the participation of Mike Nichols and other celebrities in the Center founded her own service-oriented group, Friends in Deed.
My immediate impression on our first visit was not positive. We arrived early, and the small group of white gay men who were there received us with the warmth and friendliness appropriate to vampires dropping in on a blood bank . Attempts at conversation died aborning, and we were quite frozen out. Fortunately a couple of female staff members (or volunteers) appeared who were very welcoming, one of whom was Ganga Stone, the founder of God's Love We Deliver. As I discovered later, we had had the bad luck to bump into a small clique of guys who had assumed a rather high and mighty view of themselves in regard to the organization....and as when the Titanic was sinking this elite was not interested in crowding their life boat with the common lot either.
The most prominent feature of Friends was what was called the Big Meeting, run by Cynthia O'Neal a large, twice-weekly event (if I remember correctly.) It was not a healing session as such, but attuned to helping the visitors deal with the particular moment they were in and not get immobilized as if AIDS were a bucket of cement their feet were caught in. In format it was reminiscent to that of an AA meeting. But, if it had an identifiable spiritual orientation, I would say that it was similar to that of Ram Dass, whose name was, in fact, mentioned in passing by Cy O'Neal a couple of times that I recall. (This is my impression and not an association that was ever stated by the organization.)
The organization also had other services small groups that met for support, diet, spiritual discussions, plus counseling, acupuncture, massage, etc.
Charles, who was normally a very assertive and sometimes, in-your-face person, never connected comfortably with Friends, and whether this was due to our initial reception by the elitist clique or that he simply didn't find what he was seeking there I was never able to discover. He did not want to go alone, and we went quite a few times together. Eventually he stopped attending, though I continued sporadically, and briefly was part of a handful of people who met at Ganga Stone's apartment as well.
The organization attracted mostly gay white men at this time, most of whom seemed to have white collar or theater backgrounds. However, the Big Meetings I attended always had Hispanic and black attendees, too, and there were always a fair number of women present at any activity. The AIDS epidemic may have provided the impetus for Friend's formation, but it did not focus on this exclusively, and cancer was the issue for many of the women, I believe.
Meanwhile, the hate mills of the righteous and the holy belched smoke, continuing their work with Satanic zest.