‘We Are Not Lepers’ : AIDS Stigma Hampering a Solution
Hoping to live but expecting to die, weakened by one horrible infection after another, AIDS patients at San Francisco General’s Ward 5-A wander down to the Elizabeth Taylor room to chat, watch TV or just stare at a movie poster of the actress, voluptuous in black lingerie.
Not quite the crucifix or Rockwell print expected in a hospital room, but people with AIDS are different: Condemned by a virus, they also have been judged harshly by humans.
“Homosexuals have declared war on nature and now nature is extracting an awful retribution” is the way then-columnist and now-White House Communications Director Patrick J. Buchanan put it without explaining why nature had also gone after hemophiliacs while sparing lesbians.
Why a Sexy Pinup?
Men subject to such attack may require the solace of unconventional icons. But why a sexy pinup of Taylor in a ward mostly filled with gay male patients?
“Because it’s fun and there’s life in it,” was one response. It’s called the Elizabeth Taylor room “because she was not afraid to come here and visit us, she had the guts to show that AIDS is not spread casually and that we are not lepers.”
It is a mark of the AIDS patients’ numbing, leperlike isolation that Taylor is still one of the few prominent Americans to have come openly to their side.
To comfort the dying and contain an epidemic which has already claimed the lives of 16,000 Americans and threatens hundreds of thousands more would not seem controversial. But the five-year-old AIDS epidemic has been marked by a stigmatization of those afflicted that is without parallel in the annals of modern medicine. As a pox visited primarily on a vulnerable minority of homosexual men, AIDS has touched this society’s raw religious and sexual nerves.
As a result, the routine has become controversial. For example, Norman Podhoretz, editor of Commentary magazine, criticized public funding of a crash program to develop an AIDS vaccine as “giving social sanction to what can only be described as a brutish degradation.”
Because such homophobic sentiments exist--and because some considerable number of Americans share them--the burden of caring for the isolated sufferers of this savage medical disorder has thus far been borne mainly by a thin line of doctors, health workers and a small group of heroic lay volunteers. Worse, there is mounting evidence that America’s reluctance to come to grips with the AIDS epidemic--whether rooted in prejudice, inhibition, distaste or indifference--has made the impact of this disease much more devastating than it need have been.
The isolation felt by those touched by AIDS was clearly visible recently, when Taylor went to the Wiltern Theater to address a benefit for AIDS Project Los Angeles, the grass-roots operation that ministers to the needs of most of Los Angeles County’s 2,400 AIDS patients.
“Go up to your neighbor and grab them by the throat, if necessary,” Taylor urged. “We have to break down the barrier; there is a stigma.”
The audience roared in approval. They knew the stigma well. Many of those attending were male homosexuals, who--despite their individual achievements--have never been more than tolerated and now are more than ever despised.
A Death Sentence
Upward of 70% of all American homosexuals may already have been exposed to the virus. By conservative estimates, 10% to 30% of those infected will come down with AIDS. That means their immune system will be so impaired that they will be defenseless against fatal illnesses. That means they will die.
It is a statistical death sentence without equal in recent American history and yet those living under it remain the object of cruel jokes and pervasive indifference. Many of the 80 healthy looking, clean-cut young men in the Gay Men’s Chorus that opened the Wiltern Theater benefit are doomed. Members of the as-yet-undevastated heterosexual world may forget that, but it is a minute-by-minute fact of life for the men who sang: “Who will be there when you shiver and bleed . . . and who will turn away from your need?”
Artistic hyperbole? Not to Judy Spiegel, who on the third day of service with the AIDS Project Los Angeles visited a client in his one-room West Hollywood apartment. Her master’s in public health did not prepare her for what she found: a 30-year-old man who looked 85, who had lost part of his mind and control of his bowels. His skin was dry and inelastic, his face sunken, his eyes vacant and hollow. Formerly a successful commercial artist, he had become, in his last days, helpless and confused, reduced to living in his own waste.
‘A Good Artist’
Spiegel judged him to have been “a good artist, and whenever a bit of strength returned even in his enfeebled condition he continued to draw. This was around Christmas time and there were a number of beautiful drawings that he had done and decorations he had made for Christmas.”
But most of the time he was without the strength to care for himself or anything around him. “He had a cat that also looked terribly malnourished and filthy,” Spiegel continued. The oven was turned on--a gas oven used for heat with the door open--even though there was a heater in the apartment. But he had organic brain syndrome, as occurs in some AIDS cases, and had turned on the oven and just left it on.
“He didn’t have the strength to go to the bathroom. When we came, we found him lying on a mattress on the floor in the middle of the living room, like living in a giant litter box. The social worker who was with me asked him how he was doing and he said: ‘Fine, go away.’
‘I’m Tired, Go Away’
“And she said: ‘No Rocky, I want you to sit up and talk to me,’ and he kept saying: ‘No, I’m tired, go away,’ and she kept saying she wouldn’t go away unless he sat up. But he didn’t have the strength. He then started talking about how he had his tickets on Amtrak to go to New York City. He said: ‘I got to get packed. Help me pack. I’ve talked to my mother and I’m all ready to go.’
“But we kept saying: ‘You’re too weak to go.’ We decided he needed to go to a hospital for ‘round the clock care.
“At that time in L.A. it was nearly impossible to get home care for people with AIDS and nearly impossible to get an ambulance. We got his stuff together, took a little suitcase and went back to the office to call ambulance services. I spent the next four hours on the phone trying to get an ambulance and couldn’t. Maybe we made a mistake in telling them what he had. It wasn’t a life and death thing so you couldn’t call it an emergency.”
Many False Starts
A day later--after many false starts--Spiegel managed to induce an ambulance crew to take the artist to Harbor General Hospital, where he died three weeks later.
“It was better that he died,” Spiegel said, revealing despair rather than a lack of compassion. “We could not find anybody to go home with him or take care of him. There still are no skilled nursing facilities that will take AIDS patients.
“A year ago, we had another patient and the ambulance came to take him to UCLA hospital and they refused to put him on the gurney. They made him walk to the ambulance by himself and he fell down the stairs. They were afraid to touch him. That man died a week later.
“We don’t do a great job in public health to begin with and AIDS affects segments of the population that most people don’t really care about.”
Numbers Seem Unreal
Whether they care or not, it is difficult for non-homosexuals with the best of intentions to grasp that a plague has hit around the corner. The numbers seem unreal.
Reporting from the world of AIDS sometimes feels like a battle report from Lebanon--only it’s right down the block. Walk through the gay ghettos of West Hollywood, the Castro district in San Francisco or New York’s Greenwich Village and the sense of impending death is palpable. The Kaposi’s sarcoma cancer sores are visible, you can hear the coughs of those with pneumocystis carinii pneumonia or tuberculosis and you can witness the thinning of ranks in familiar places. It was necessary for a reporter to constantly check back while writing this article to see if his sources were still alive.
“I seem to attend a funeral a week,” said political consultant David Mixner, who is gay and who has lost more than 40 friends and acquaintances to the epidemic. Mixner’s low-keyed business partner, Peter Scott, a charming Texan well liked by political reporters, nodded in assent.
‘Casualness About Death’
“Five years ago, if a friend had died it would have been a major event in my life. Now, it almost has to be my best friend,” said Scott, who is also a past chairman of AIDS Project Los Angeles. “It’s gotten to the point where you see someone you haven’t seen for a while and you’re surprised they’re still alive. The casualness about death that I am beginning to accept is frightening.”
A few days and a dozen interviews later, a reporter--pleased with the material he’d gathered and his mind on lunch--happily prepared to leave AIDS Project Los Angeles’ storefront office, only half hearing someone remark in passing: “Peter has it.” Later, comprehension hit--and suddenly that Peter had a face.
Shortly before his diagnosis, Peter Scott testified before the Los Angeles County Board of Supervisors about the need for more governmental support in fighting the epidemic. Only two supervisors sat through his remarks; only one was sympathetic.
Concern for Confidentiality
Before his diagnosis, Scott had not taken the test to determine whether the AIDS virus was present in his system because he wasn’t sure the results would be kept confidential. Nor could the result change his behavior because “I haven’t transmitted a bodily fluid in so long it’s not funny, so the result wouldn’t matter.”
But somewhere back in a time before he or anyone else knew about the AIDS virus, the virus had met him.
In an interview at the No on 64 campaign office, where he was working before he was diagnosed, Scott said: “It’s a messy death and can be very awful and slow and painful. Also there’s a feeling that once you have full-blown AIDS that there is no hope even with drugs.”
As with so many conversations with people working on the AIDS problem, Scott’s remarks were intended generally but carried the sense that he too might become one of the casualties in this mysterious war: He is in the high-risk group. So is his business partner Mixner, who sat in on the interview and who suddenly broke an awkward silence with the observation that the political debate concerning AIDS was not fair “because one side is being political and the other is dying.”
Seven Days of Anxiety
It is not just politics that seems beside the point. The journalist, the doctor and the social worker who for one reason or other do not feel that they are at risk may tend to miss the immediacy and terror of the moment. This reporter, who received blood transfusions before the blood supply was cleaned up, recalled his seven days of anxiety waiting for test results that could--but did not--spell the end.
How do they, people in the high-risk group working with AIDS patients, reminded of their own vulnerability at every turn, take it? One of the four founding members of AIDS Project Los Angeles is dead and another is seriously ill. The recipient of the organization’s volunteer of the year award, presented at the Wiltern benefit, was in the hospital three days later and two days after that was dead.
Last seen after the event, standing on a street corner and holding a flower, waiting for a ride, that 30-year-old man, who had comforted others even as he was dying, was too tired to be interviewed. “Maybe later,” he said.
Death Numbers ‘Numbing’
“The numbers are devastating,” said Stephen Lachs, AIDS Project Los Angeles’ chairman and California’s first openly gay judge. “A couple of years ago I could have counted on one hand the number of people I know who have died of AIDS. But at this point the numbers of people I have known as friends and associates who have died seem to be coming so fast that it’s numbing, you sometimes feel you can’t take it and want to go and hide somewhere.”
Dan Morin, who coordinates the project’s volunteer program out of a cubbyhole in the organization’s West Hollywood office, knows that strain well. As a gay man, he is in the high-risk group himself and has had many friends die. He is willing to struggle with that, but he resents the added strain of the stigma associated with AIDS.
“The other established health organizations don’t have the problems we do: fear of being connected with gays--the stigma,” Morin said. “And then to have people saying these people deserve to die. There is no other illness in this century where such a hypocritical attitude was expressed. Those fundamentalists remind me of the Pharisees in the New Testament. They go about meeting all of the right external obligations but there is nothing inside of compassion.”
‘Fear Is Understandable’
Scientific studies--by now amply reported in the press--have shown that AIDS cannot be transmitted by casual physical contact. But even those willing to volunteer to assist the epidemic’s victims confess to initial fears of such contact. Morin had such trepidations. But he added: “Fear is understandable when people don’t have knowledge about the disease, but manipulating that fear is unforgivable.
“Most people with AIDS cannot go back to their families,” Morin said, indirectly suggesting the enormous emotional chasm that his volunteers must fill as a result. “God, there are so many people whose families want nothing to do with them when they are diagnosed. Like the story of the man coming home for Thanksgiving who was told: ‘You can come but your dinner will be on the front porch.’ Any story that you hear in association with AIDS that sounds heart-rending is probably true. In the beginning I used to think the stories were exaggerated because they sound so cruel, but I have come to see that they are true,” Morin said.
Now 42, but still looking every bit the earnest and youthful college recruiter he was before taking this job three years ago, Morin consciously controls his anger. “It’s not productive,” he said, gazing out over the papers piled high in his airless little office. “I need all of my strength for my work.”
‘Never Felt Persecuted’
So does Bill Misenhimer, 37, one of the AIDS Project’s first directors, whose life style in the pre-AIDS world did not prepare him for controversy or anger for that matter. Clean cut, conservative of dress, always efficient and responsible, he suggests the perfect corporate organization man or yuppie.
“I was never a gay activist,” Misenhimer insisted. “I’ve never felt persecuted. I’m only concerned about this disease and hate being called a gay activist.”
His mission for four years at the center of the AIDS storm has been to marshal meager resources for health care and medical research rather than the advocacy of an alternative life style. But he keeps getting treated by government officials and others as if it’s the latter that he’s about.
“I testified before the county supervisors last year, outlining what AIDS Project Los Angeles thought was a necessary program of support. The woman before me got 20 minutes of undivided attention to discuss lost towels in the county hospital. When my turn came, I was told to summarize my testimony in less than five minutes and three of the five supervisors walked out before I finished.
‘Grown Men Don’t Cry’
“It’s still difficult for us to get money from the corporations and foundations to this day. Private citizens write to us asking us to send letters without the word AIDS on the envelope. Who wants to help a queer, who wants to help a druggie? Grown men don’t cry, I’ve been taught, but considering the unimaginable suffering that you see and not to get the support. . . . They should have been doing a lot more, particularly in education, and should have done it a long time ago.
“I’ve known about 60 people who have died, including one of my two closest friends of 18 years.
“This is just the beginning and who knows how many are going to die? No one ever expected that healthy men would be dropping like flies. It’s not going to stop, it will get worse. None of my friends goes out anymore. I haven’t gone to a gay bar in over four years. People are scared to death; every time someone gets a zit or a sore throat they panic.”
Paula Van Ness, the Junior Leaguer who is the executive director of AIDS Project Los Angeles, is painfully aware that such fear extends beyond the disease itself. “There are people who have the disease who cannot bring themselves to call or walk into our offices because of the stigma--a double stigma--the implication of drug abuse and homosexuality,” she said. “Friends call me and say: ‘I have a colleague at work who has it, what can I do?’ We often send caseworkers out to meet people in a coffee shop to spare them embarrassment.”
AIDS is still largely perceived as a gay disease, despite the fact that lesbian women--who do not tend to exchange much bodily fluid--are less at risk than heterosexuals and despite the fact that husbands have passed it to wives and vice versa. In Africa it is centered in the heterosexual population. Here it has ravaged hemophiliacs--80% of whom are thought to be infected--as well as an unknown number of people who received contaminated blood transfusions.
The epidemic is now spreading most rapidly among intravenous drug users, and their practice of exchanging blood on unsterilized communal needles is expected to be the main transmission route into the sexually active heterosexual population.
In New York City, where the largest number of AIDS patients live, 28% of the recently diagnosed cases are heterosexual and intravenous drug users.
Public health experts are convinced that explicit education of the heterosexual community about safe sex practices and drug use is essential to containing the epidemic. But they also despair of overcoming government resistance to such programs, resistance borne of the fact that this is a sexually transmitted disease which began among a suspect subculture.
Stigma Shapes Response
So the stigma attached to this disease continues to shape the nation’s response to it.
“There has been a persistent failure of moral leadership from the President on down,” contended Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, an organization founded by Elizabeth Taylor. “President Reagan didn’t even mention the epidemic for four years and then only to alarm people about the blood supply and to endorse the alarm of parents over AIDS children going to school, in both cases ignoring the medical evidence.”
Silverman, the blunt former director of health in San Francisco, aroused the ire of some gay leaders when he closed that city’s predominantly gay bathhouses in an attempt to contain the AIDS virus.
He now believes the rate of infection has begun to slow in the gay community, which has been responsive to education, but that intravenous drug users are still sharing contaminated needles and that the toll there is rising. Silverman contends that the next big at-risk group is heterosexuals who are in sexual contact with intravenous drug users. “I’m dumbfounded,” he said, “that the President did not even mention this problem in his national address on the drug problem.”
What About Heterosexuals?
Silverman argues that political leadership is required to mitigate the stigma attached to this illness. “It’s obscene to attach a stigma to any illness. We don’t do it with people dying from cancer because they smoked even when they were warned in time that smoking is dangerous. The vast majority of the people who have been exposed to the AIDS virus contracted it before we knew there was such a virus or how it spread. How can we hold them responsible for their fate?
“What about the heterosexuals who are already getting it in increasing numbers while homosexual affliction declines? Have they been warned or are we letting this stigma get in the way of educating the larger population about this scourge that concerns everyone?”
Tough talk, but no tougher than that of Republican Rep. William E. Dannemeyer of Fullerton, who casually asked a reporter: “How much education do you need to get them to stop buggering each other?”
Such sentiments have had an impact.
According to Martin Finn, a physician who is the medical director of the AIDS program for the Los Angeles County Health Department, “Dannemeyer reflects an attitude that has been rampant in government at every level that AIDS is a problem for gay people only and they are not important people.”
Physician Michael P. Roth, whose private medical office treats almost one-fifth of Los Angeles’ AIDS patients, agrees. “Our Board of Supervisors has done relatively little to deal with the problem in L.A. county,” he said. “We fought tooth and nail with the Department of Health Services on the state level to get the appropriate funding for information and education. How many people have been infected because of the lack of education funds since the summer of 1980?”
“Professionally speaking,” said Finn, “we have turned our back on this problem and we have lost control as a result. We have not spent nearly enough money to control what may be a catastrophically expensive illness not only in dollars, but also in human pathology.
“About one-third in the high-risk population now are infected with the virus here. In San Francisco they say 50%. If we could have educated them about safe or low-risk sex early on, as soon as we had an inkling that this was the main way it was being spread, we might have kept it down to 10% or 15%.”
Statistics may be tepid but the difference between a 15% and 50% infection rate, according to Finn’s calculations, means that tens of thousands in Southern California and hundreds of thousands around the country will die who could have been saved by education.
“You just can’t deny the politics of AIDS,” Finn said. “It influences everything. Public health is an interface between medicine and government. AIDS affects primarily an unpopular sector of our population. I see a lot of homophobia affecting decision making.”
To Finn, Silverman, the people at AIDS Project Los Angeles and others, prejudice too is a killer.
As Albert J. Ogle, an Episcopal minister working on behalf of AIDS patients, put it: “If our society responds compassionately to this disease still centered primarily on marginal groups, we can contain it. But if we don’t respond compassionately, it will kill us all.”
Times researcher Nina Green contributed to this story.
AIDS Project Los Angeles is providing free food to sufferers of the disease. Part II, Page 1.