So far, health officials the world over had sought to control the spread of AIDS by using the punitive measures traditionally employed with other sexually transmitted infections such as syphilis and gonorrhea. They hinged on compulsory examination and testing, “contact” tracing (of the sexual partners of infected individuals), and enforced treatment, hospitalization, or quarantine for any length of time. Their reliance on such repressive measures was even stronger with AIDS because the hysteria about the disease made it seem to many to be an implacable demonic force rather than a challenging viral epidemic.
Mann’s usual passion intensified visibly when he started explaining why a diametrically different approach was needed to control AIDS, one that protected every individual’s human rights.
Basic civil liberties had to be explicitly protected because, virtually everywhere, the disease epidemic was followed by an epidemic of human rights abuses—with everybody from families, neighbors, and employers to government authorities turning on people with AIDS or whole sections of society blamed for spreading the disease. The abuses worsened once tests to detect HIV infection were developed in 1985. Governments authorized public health authorities—often working in tandem with the police—to carry out compulsory tests on groups presumed to be at high risk and to detain or isolate infected people. By the close of the epidemic’s first decade, more than a hundred countries had passed special AIDS-related legislation, most of which violated the civil liberties of particular groups.
In addition, the broad sets of rights that are essential for human well-being had to be promoted, Mann said, pointing out that AIDS was disproportionately concentrated among populations whose human rights were least fulfilled. “In each society,” he argued, “those people who, before HIV/AIDS arrived, were marginalized, stigmatized, and discriminated against become those at highest risk of HIV infection. . . . HIV is now becoming a problem mainly for les exclus, the ‘excluded ones’ living at the margins of society.”
Mann insisted that the traditional, coercive public health approach was doomed to fail with AIDS. One crucial difference posed by HIV was that people remained asymptomatic and healthy for typically six to eight years from the time of initial infection, meaning that they could unwittingly pass on the virus to sexual partners during that period. Also, even resorting to mass testing to detect people with HIV offered no solution—short of the impossible one of quarantining millions till their eventual death. The use of extreme measures would worsen the already intense public hysteria about AIDS and drive individuals who were infected or at risk underground, away from health services.
All that made sense to me. From my earliest days in the United States in the 1980s, as the epidemic had swelled, I had witnessed the irrational hysteria and the abuses that had followed: the demonization and then the persecution of gay men, drug users, Haitians, and other groups associated with the disease in the popular imagination. Twenty states had considered laws to quarantine—presumably for the remainder of their lives—the tens of thousands who were HIV-positive or sick. HIV-positive children had been barred from schools; their homes had even been torched. Doctors who treated AIDS patients had been targeted. And the activism of gay American men had shown that AIDS was inherently a civil rights matter—as they battled against being thrown out of their homes or being fired from jobs, against the political indifference that stalled the search for cures, against the blatant hatred that led to them being denied medical care even when agonizingly sick.
I also knew from personal experience that criminalization and marginalization made gay and bisexual men, as a group, more vulnerable to the epidemic. The pathways were innumerable: by preventing us from having healthy, open relationships; by forcing us away from our families as well as from mainstream society; by giving us no option but to seek furtive, unsafe sex in parks and toilets; by keeping us from openly seeking information about safe-sex methods, buying condoms and lubricants, or getting tested to know our HIV status. It was only from Mann’s teaching that I could begin to frame these handicaps in the formal human rights language of the “systematic unfulfillment of broader civil, political, economic, social and cultural rights.”
But most of my classmates were midcareer health officials or practicing doctors. Almost unanimously, they had been taught that human rights could be legitimately set aside in light of public health imperatives, especially during epidemics of contagious diseases. “Leper colonies,” in which countless men and women suffering from leprosy were forcibly confined for their lifetimes, exemplified the appeal of this approach. Even the Hippocratic Oath—which requires doctors to keep their patients’ ailments secret—would have to be put aside in the face of the public good. It was no wonder that many of the students did not respond with ready comprehension during Mann’s class sessions on human rights. It earned us his ire—any poor student who dared question him was frowned at as if she or he were a nitwit.
Despite the odds, Mann’s powers of persuasion were such that, within a year of joining WHO, he had succeeded in getting the world’s governments to disavow their reliance on the old coercive approaches and commit to a more humane strategy based on promoting knowledge about AIDS, responsible behavior, and human rights. Every year thereafter, he strategically pushed governments to make ever more explicit commitments at the WHO’s World Health Assembly, the UN General Assembly, and other global bodies. The speed of change was astonishing.
The first global resolutions approved on AIDS, in 1987, did not explicitly mention human rights. But by the following year the world’s health ministers had declared, at a London summit, “We emphasize the need in AIDS prevention programs to protect human rights and human dignity. Discrimination against, and stigmatization of, HIV-infected people and people with AIDS, and population groups undermine public health and must be avoided.” And by 1991, a year after Mann’s resignation, a UN General Assembly resolution explicitly committed governments and intergovernmental organizations to “protect the human rights and dignity of HIV-infected persons, persons with AIDS and members of particular population groups” as well as to “avoid discriminatory action against and stigmatization of them in the provision of services, and in employment and travel.”
Those achievements by Mann and his team marked one of WHO’s finest moments of global leadership in the organization’s forty-year history. Mann had succeeded in ensuring that a disease spread by sex and drugs and associated with undesirable people be viewed rationally as a public policy priority. He had also convinced the world’s governments to make written global commitments that, in their efforts to control the pandemic, they would respect the basic human rights of every individual—whether it concerned people stigmatized for being infected with AIDS or those of us who were so reviled for being gay, selling sex, or using drugs that governments would not even mention us in their declarations.
The fate of us outlaws hung tenuously on those coded, formalistic mentions of “particular population groups,” of “discrimination” and “stigmatization,” of “human rights” and “human dignity.” Those elliptical words were the key to our very survival.
Would the world’s governments take them seriously? Would the United Nations—that imperfect, embattled mediator between hostile nations—emerge as an honest advocate on our behalf?
If those commitments were honored, governments would move to provide sex workers, gay men, and drug users with effective HIV prevention services, as well as undertake legal and policy changes to address the terrible disadvantages we had long faced. If they were ignored, we were likely to be subjected to even more harm and persecution than ever before. Whatever the outcome, we would probably not even have had those opportunities if Mann hadn’t pushed governments to agree that AIDS was a human rights issue just as much as it was a deadly disease.
The year rushed by at a speed that I could barely imagine. I missed Tandavan intensely—I phoned him every weekend and in turn would find rambling, loving letters from him in the mail, full of his endearment
s for me of bébé and naikutti, the writing interspersed with ink portraits of whichever friends he happened to be with—but there was scarcely any time to let it get me down. The weekdays were consumed by class; the weekends by readings and papers. There was no end of dinners and events to go to, not just with new friends among my fellow students but because Rosie, my beloved friend from college in Delhi, was now living in Boston with her husband, Badri.
I unwound once again as the tension that had accumulated from living in India fell away. I was again just myself—not evading the fact of being gay if professors or fellow students asked an innocuous personal question, not worried as in Delhi that my landlord and neighbors would ostracize me if they discovered I was gay, not apprehensive that some terrible persecution lay ahead.
I went half a dozen times to gay bars and to parties hosted by the Harvard gay group. I had two torrid affairs. One was an intensely sexual one, with a Mexican dancer whom I had first met when he was touring in India; he was now in New York City with the Martha Graham Dance Ensemble. He was beautiful like a male antelope, hard muscle stretched over fine bones, with buttocks of a breathtaking fullness.
The other affair was intensely emotional. That lovely man, Marc, was Louisiana Creole, a decade older than I, self-assured and caring, passionate about the arts as well as about social justice. Though there were moments when I felt I was headlong in love with him, soon enough some memory of Tandavan would make me realize that I was wedded to him. Perhaps Marc—whom I had told from the outset that I was in a committed relationship—also sensed that. When my second, final semester was drawing to a close, in his characteristic serious way he told me that he would be very happy if I stayed on in Boston with him, that we could get a dog and live together. He didn’t reproach me when I said, some weeks later, that I could not stay on, merely said that Tandavan must be very special for me to love him so deeply. Fortunately, our relationship transitioned into an enduring friendship.
In the spring of 1991, some weeks before the final semester was to end, I decided to get an HIV test. I dreaded that test even more than the previous one, back in Minneapolis in 1986. At that point, my anxiety had resulted from knowing very little about AIDS. Now I knew a lot about AIDS—and I knew I had many reasons to be worried.
Tandavan and I had stopped using condoms soon after we began living together. While living in India, I had once suggested to him that he get tested on one of his frequent visits back to France. But Tandavan had been terrified at the prospect, and I had let the matter drop, reasoning that it was too late to do anything even if he was infected; with the amount of unprotected intercourse we’d had, it was certain that I would have contracted HIV, too.
Adding to my apprehension, in the years since I had met Tandavan and become sexually active, I had had penetrative sex with at least two dozen men besides him. Though I had unfailingly used condoms with each one, I had not known that using petroleum jelly or oil as a lubricant multiplied the risk that a condom would tear, a fact that I had come to learn only during my Harvard course work.
A positive HIV result would stay on my medical records and affect my future medical insurance. So instead of going to Harvard’s health services I sought out an LGBT-run HIV testing and counseling center in downtown Boston. It was housed in a nondescript building, a single large room flanked by enclosed small ones. I felt a rush of relief at seeing that instead of the clinical coldness of medical settings, it had the warmth of a community center, the sofas and chairs in the waiting area scuffed by use, newspapers and magazines piled untidily, casually dressed people busily going about their work.
But within minutes I realized that there was a palpable sense of tension despite the comforting ambience. The two other men sitting in the waiting area barely acknowledged me; their anxiety was obvious. And from one of the rooms, the unmistakable sound of uncontrolled weeping began to spill out through the glass walls and door. That weeping could mean only one thing. I was immediately swept with anxiety, imagining a similar fate for myself.
Soon enough, a young counselor guided me into one of the small rooms, shutting the door behind her. I was about to shake hands and tell her my name, but she quickly cut me off saying that the center did anonymous testing and as a matter of policy did not want to know my name. She explained that I would be given a slip with a sequence of random numbers and four days later the results would be given against that number, so I should carefully hold on to the slip.
On my way out of the center half an hour later, I felt a huge wave of gratitude for community-run HIV counseling centers. They made dealing with the terrors of AIDS less worrisome, because you knew you were with people who cared deeply and whom you could trust.
I returned to the center four days later, so frightened I feared I would faint. Somehow I found myself seated in one of the small consulting rooms, facing a counselor, who opened the sealed envelope that had my results, looked at it intently, and then said, the tone of her voice purposively unchanged, that my results were negative.
I called Tandavan in Paris, exulting on the phone that my HIV result had been negative—to his surprise, as I had deliberately not told him that I had decided to be tested—and that that was doubly wonderful as it definitely meant that he, too, was uninfected!
TEN
THE PERSECUTED
That summer, I flew to Paris to reunite with Tandavan. My joy was magnified because our immediate future plans had unexpectedly fallen into place. Starting in September, we were to move together to New York City, where I had a six-month assignment with the United Nations Development Programme. As a French national, Tandavan could stay in the United States for several months at a time without needing a visa.
He looked tired and older. The combination of dealing with diabetes and his demanding dance regimen was beginning to take a physical toll as he neared forty. I was relieved that our long months of separation were over and that I could now look after him. In our recent phone conversations, I had sensed that he was not his carefree Peter Pan self. We had both missed living with each other. But now, far from the risks of our Delhi life, we would be living together in a place where we need not live in fear. I described the apartment I’d already found for us, tiny but sunny, on the second floor of a Murray Hill town house, a ten-minute walk from the United Nations.
I had a week with Tandavan before heading to India, where I was to spend the next few months writing about the AIDS epidemic. The week was lovelier than even a honeymoon. Instead of feverish desire, there was the surety of knowing that I was deeply loved and needed.
In those months of research in India, I thought often of Jonathan Mann because everything he had taught me about AIDS was visible there: the speed at which India’s epidemic was growing, the challenges to action posed by the disease’s long asymptomatic period, and, most graphically, the human rights abuses. Yet, despite all that I had learned in his class and despite being knowledgeable about Indian health matters, I was often overwhelmed by what I was seeing, this being my first attempt to investigate the ground realities of the epidemic.
Though it had been just five years since the first domestic cases of HIV had been detected in India—among Selvi and the five other sex workers in the Madras reformatory—more than half a million adults in the country were infected, WHO estimated. Yet fewer than a hundred cases of AIDS and fewer than six thousand known cases of HIV had been reported to the government through a screening program covering the major cities, mainly from hospitals as well as clinics treating sexually transmitted diseases.
I began my research in the handful of hospitals, almost all government-run, that were willing to care for people with AIDS. J.J. Hospital in Bombay, a grim, no-frills set of buildings teeming with patients and their families, was one of these rare places, under the supervision of Dr. Smita Gupta, head of the department of medicine. Brusque and no-nonsense, her one comment to me before leading me to her patients was that “even when the senior doctors look through the microscope at the HIV viru
s, they keep making funny remarks.” Her frustration was visible. But the doctors’ prejudice as well as their reasonable fears of contracting HIV, given the chronic shortages of gloves and other essential safety supplies, had far-reaching costs. They insisted that Dr. Gupta treat patients with HIV in a separate ward, even though that reinforced paranoia about the disease and made it likely that the patients’ identities would become known publicly.
When Dr. Gupta took me to the ward, I noticed with relief that at least there was no sign identifying it as the “AIDS Ward”—like the one I had seen just days earlier at the All India Institute of Medical Sciences (AIIMS) in Delhi, the country’s leading public hospital. The AIIMS ward had been completely empty in spite of the public expense that had gone into creating it, because doctors and nurses refused to care for patients with HIV. Here each one of the seven beds, crammed close together, was occupied. The ward at AIIMS was spanking new and pristine; this was a general ward with metal-frame beds, tattered sheets, and equipment worn down by overuse. In Delhi, with no patients to tend to, the staff stood around chatting. Here, they were so busy caring for the patients that they paid neither Dr. Gupta nor me any attention.
The patients! On every bed, there were sights of heartrending suffering, beyond anything I had seen except, perhaps, the leprosy-infected outcasts on the streets of Calcutta. My attention fixed on one patient in particular, because his physical suffering looked even more unbearable than that of the others. Across his long, emaciated body—only a thin sheet covered his groin—were suppurating dark boils, each the size of a clenched fist. What were they?
Whatever I had learned at Harvard about the myriad HIV-related opportunistic infections—candidiasis, Kaposi’s sarcoma, Pneumocystis carinii pneumonia, tuberculosis, ulcerative herpes, and so on, the endless A to Z of torture spawned by HIV—deserted me when faced with that living proof. He was skeleton thin. This I recognized as the condition called “slim” disease in Africa because of the wasting caused by uncontrollable diarrheal infections. There were bandages tied onto so many parts of his body—one of his legs had been raised and tied to a pulleylike contraption—that it seemed as if the doctors were attempting to hold his limbs together as his flesh wasted away.
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