HIV and AIDS: The Global Inter-Connection

LONG LIVE LIFE!

By Herbert Daniel

This article is dedicated to my best friend, Sheila, who like me is fond of the Beatles and the Rolling Stones and does not give up.

In this narrative I am embarking upon, I will talk about the future. This means repeating what has become my basic message during the past two years: I have HIV and I am alive. This statement, in the simple present, is my celebration of the future. This message, usually followed by a joyous cry of "Long live life!" may seem like a paradox if we let ourselves be guided by the mass of fantasies created during the past decade about this disease and epidemic. For me, this time has been an apprenticeship in living, and in hope. To be honest, I really cannot state that I discovered that I am going to die, or that I came to have a more intimate relationship with death. These banalities would not have gotten me very far. What I have discovered, if I may use that word about the intuitions that being infected with HIV have brought me, is my mortality: the meaning of my own fragility, of my transitoriness and of my impermanence. Mortality is not something to be confronted in the distant future, for I am now face-to-face with my own future.

As we confront HIV worldwide, we must ask what the future will be for each and every one of us. Many doomsayers have sounded their trumpets, pronouncing the epidemic a sign of the end of time. As if it were our failure before a virus that seemed, in this openly terrorist view, to have a moral objective and a teleological orientation. I never believed these pessimists, for I soon realized the ideological content of their analyses. They are the same pessimists who were always rushing to explain humankind as a consequence of a particular failure at a certain moment of the Fall, and sought to reduce our quest for the recovery of a Lost Paradise. Labouriously developed over a ten-year-period of renewal of taboos and prejudices, the metaphors of HIV were served as a good model, typical of the 1980s, for the mystifications of the Fall and Salvation.

Since the beginning of the 1980s I have participated in HIV information programmes. At that time their main thrust was geared to people who had not yet been infected as the number of infected persons seemed too insignificant to focus on. It seemed there was little or nothing to say to those who were living with HIV or those diagnosed with AIDS, except that they were about to die.

That is exactly how I felt when I became ill. Even though I considered myself a relatively well-informed individual, I immediately translated into death the diagnosis of pneumocystis pneumonia which I was given by a doctor who acted strangely and was excruciatingly shy about pronouncing the word AIDS in front of me. He referred to "another infection," as if he were under the power of an ancient superstition (some say that the name of the devil should not be mentioned, so as not to invite evil). I knew then that I had a disease whose name was not spoken. Even though I knew much more, at that moment of despair the prevailing thought was the popular formula AIDS = DEATH. Statistics took on reality in my mind. I became a number, and I concluded that I had two more years of life.

This happened two years ago. I knew at that moment that I was dying and that my days were numbered, rigorously and mathematically. In the midst of my fever, of my crisis, of my awe, I saw myself as benumbed, as someone dying much more from the belief that I was going to die because I was HIV positive than because I was facing a disease that would consume me.

Then I looked deep inside myself and discovered an extraordinary thing: I was alive. Furthermore, I was going through an ordinary experience, namely that of dying. An experience all of us, with no exception, will go through some day. Yet for most it is always in the distance. How was it then, I asked myself, that I could go through this experience and not communicate it as something deeply original, to be shared by the ones I love? I felt immediately that I was not dying from AIDS, one of the conditions associated with infection by HIV. I was dying from something else, also called "aids," which was a very complex social construct that led me to accept ostracism, separation, and banishment. I was dying from what I might call social death, the absence of all human rights. What can it be that leads us to alienate ourselves so absolutely from our concrete experiences? Yes, I was very ill. But I was suffering more from the effects of an induced image, a metaphor. A word had been spoken and it was bewitching me.

My initial reaction was a burst of passion. I said: I am living my life! And I insisted: I am not going to let myself be killed by prejudice. If the virus is going to kill me, let it do so after I have exhausted my resources to achieve a balanced coexistence with it.

That is why I am now going to speak about the future. I am forty-four years old. I remember myself at the age of twenty-four, full of enthusiasm for the novelties of the world opened up by the Beatles, at the time when, as a participant in the resistance against the military dictatorship in Brazil, I was condemned to death. At that time I had a very intimate relationship with death. At any moment I could be imprisoned, tortured, and murdered by the agents of repression who had done away with hundreds of my companions. I escaped. But not without having learned something about death. At that time I gave little thought to a possibility like this one, of writing a narrative about my country's and the world's expectations for the future in the face of a threat as serious as infection with HIV. It happened, life happened. Many faces appear to me from my past, whispering that death is no big deal. The extraordinary thing is that the life of the dead continues to provide inspiration for the renewal of hope.

Twenty years later, here I am, imagining the future. Thus I am able to start talking about the future, as in the Beatles' song, by imagining twenty years from now, "when I'm sixty-four...." It is extremely improbable that I will be here to blow out the candles on that birthday cake. That is what they say. But it does not matter. Here in the present is where life is and has been happening. I do not know whether I will live to sixty-four. So I am sixty-four today. At this moment.

I will try to build peace, in that I will try, by dismantling the hostile triggers of the mythology of HIV, to ensure the victory of life. Perhaps John Lennon would appreciate my tribute, but I appreciate still more the possibility, in a text like this, of freezing the trajectory of a bullet from yesterday that is unable to silence a voice today, that still keeps whispering to me, "Imagine..."

Brazilian Time

In order to tell my personal story, that of someone living in a country like Brazil, I have to try to unravel a very complex tangle. Before AIDS, there was "aids." Long before diagnosed cases of AIDS appeared, the HIV epidemic was announced in my country as something we were fated to inherit from the so-called developed countries, especially the United States. The press and the public were awaiting the first outbreak of what was then being heralded as the gay plague or gay curse. The news was broken with some fanfare after a number of well-known homosexuals, who by chance had lived in the United States, died.

I am emphasizing these facts of history in order to draw attention to the process by which a mythology was built up. A process whose very striking characteristics were to determine the entire future evolution of the disease, right up until the present. The elements of that process were:

First, the exoticism of a foreign disease, virtually a fairground curiosity, capable of primarily attacking a deeply marginalized and stigmatized group which was usually relegated in the national press to the crime or medical pages. HIV would slowly be built up as a disease of other people.

Second, the sensationalism treated those assigned to "risk groups" as victims of catastrophe, but also as if they were also paying the price of a fall. The replacement of epidemiology by victimology went still further when people with haemophilia began to be affected on a broad scale, they were quickly categorized as innocent victims.

Third, the inevitably fatal nature of the disease, which directly and mechanically associated death, a cruel, inglorious death in a hospital, with behaviour patterns that were termed marginal: sex, pleasure, and deviation were agents of death.

These distortions in the analysis of what came to be an epidemic greatly influenced government decisions about public health policies. Initially, the official position, successively repeated by a series of health ministers, classified the HIV epidemic as a kind of second-class epidemic. Or it was asserted that because it affected only minority groups of the population, sectors that were defined either as marginal or, paradoxically, as elite, the epidemic was of no fundamental importance. The worst aspect of this approach was the counter-argument that the country was suffering from traditional epidemics that could not be dealt with, and as such, it would almost be a luxury to tackle a minor epidemic that was of no social importance.

Even today, it is not uncommon to hear absurd discussions about which disease, whether HIV, tuberculosis, leprosy, malaria, et cetera, should be selected as a priority. As if bureaucracy has not already made its decision: the division responsible for the HIV/AIDS programme in the Ministry of Health ranks very low within the government's organizational structure. It has little political power. To give an idea of its relative insignificance, the country's President who took power in March 1990 never mentioned HIV or AIDS, and the director of the STD/AIDS division, was unable to obtain an audience with him.

The cumulative effect of all these omissions, lack of interest, neglect, and incompetence was the creation of a body of incomplete or distorted information about HIV. This misleading information prevails both among the public, leading to panic and disturbances and, lamentably, among health professionals themselves. It is not unusual for hospitals to refuse to accept seropositive patients, arguing that they will be unable to prevent infection of other patients or of the health workers.

The failure of the public hospital network in Brazil, the catastrophic condition of health care, the ridiculously high cost of private health treatment in a country where 68 per cent of the population is living in poverty, and the profound disregard for the basic human rights of persons living with HIV is beginning to constitute a disaster of uncontrollable proportions.

For many years, many have predicted this scenario would occur if relevant HIV prevention and treatment policies in this country were not introduced. Nothing was done, and the situation is getting worse. In addition to the vast amount of suffering and the sharp increase in premature deaths, this lack of care places society as a whole in a state of some perplexity. And perplexity is a very poor counselor. Rather than drawing up effective policies, officials respond, in a spirit of pity or in a welfare approach, by attempting to mitigate the most severe cases while failing to address the foreseeable deterioration of the situation as a whole. This picture illustrates the absence of a global strategy for confronting the HIV epidemic. Without projects, without programmes, without integration of the government and the community, without dissemination of information on prevention, without incentives for research, without epidemiological follow-up, all the actions taken are proving misdirected, incomplete, fragile and conducive to prejudice and discrimination.

The indecisiveness of the Brazilian government's actions will certainly have devastating consequences. The country will reap the fruits of this incompetence in the form of a tragedy the cost of which it is unable to bear, either in economic or human terms. There is no index that can be used to measure the suffering and grief that will result from these omissions.

To sum up the Brazilian picture, I should like to emphasize that alongside the tragedy of abandonment and lack of care, the question of human rights is at the center of a worldwide challenge to HIV. The more disorganized and ineffective the programme to combat this epidemic, the more widespread social discrimination becomes and the more radical a condemnation to social death is experienced by people living with HIV. I have observed that the tendency to secrecy, the paranoid flight from their own disease, is becoming an important element in destroying the quality of life for people living with HIV. They are subjected to shame, fear and guilt, which prevent them from objectively choosing forms of therapy that are appropriate to their cases. Many opt for a crude form of social nonexistence. They give up on the idea that they are citizens with acquired rights. Moreover, they become secretive even with their sexual partners.

This secrecy, in its obsessive forms, and I am not speaking of privacy here, has been one of the ways which enable the virus's spread. The self-awareness of persons living with HIV is definitely an essential tool for bringing about the changes in behaviour capable of halting the advance of the virus. But public policies that encourage fear, shame, guilt and secrecy are the epidemic's accomplices.

This is the form of war that is being waged on Brazilians. A war that is not directed against the epidemic but instead which attacks seropositive persons. This war, full of mystifications, has dominated the Western world in recent years. The result is that many of us who are living with the disease recognize ourselves as being the battlefield in an unsuccessful war against a death that Western civilization has decided to classify as obscene.

In the face of the world's war against AIDS, we have to become recalcitrant. For reasons of civil disobedience and passive resistance. For the sake of political action which runs counter to the policy of piously condemning us to social death. As a political act, I want to be impertinent by not clinging to ultimate truths but doubting, searching, and singing hymns to life. I am a conscientious objector in a cowardly war which needs to be wiped from the face of the earth.

The Look of the Times

One experience I imagine I share with others living with HIV is that at any public meeting, when I say that I have AIDS all those present inevitably look at me in the same way. They give me a look that says that, within the group, I am the one who is marked for death. We are all going to die, the collective attitude seems to say, but you, the one with AIDS, are most marked for death.

This look is not one which is characteristic of a specific group, or of a specific occasion. It is the look of the age. For undeniably, the 1980s have chosen the seropositive, whether or not he or she has the disease, as our age's prime example of the person optimally marked for death.

I do not think this look is the look of prejudice. The type of prejudice which implies that the person living with HIV has decided to die views things differently. A prejudice which treats the concept of being marked for death as an ethical option which values death as something definitive. Something which supplants social death and establishes the present as indicative of the act of dying.

The look of prejudice is the voyeurism of discrimination which summarily defines AIDS solely as a contagious, incurable, and fatal disease, without explaining that infection by HIV can be avoided, since we know how it is transmitted. And although the virus cannot be removed from the body, the infection may be treatable.

The "look of the age" is the collective recognition of the failure of some of the broken promises of the twentieth century. The promise of eternal life offered by medical technology. The promise of the good life and everlasting youth offered by advertising. The promise of guilt-free sex without consequences given by the illusions of an assumed sexual freedom. This look of the age, which singles me out as marked for death, is a symptom of an uneasy conscience, an embryonic manifestation of what of what should be the critical awareness of HIV as the crisis of our civilization.

It is difficult to meet this look of the age, and to counter it with the look of what I call life in the face of death. Faced with this look, one has to avoid the temptation of the possible truth attributed to the dying man on his deathbed who has the right to say whatever he wants because of his complicity in the mystery of the beyond. In fact, I know nothing about life after death. If AIDS inspires me to ask any question, it is the following: what life, if any, exists before death?

Any possible complicity we can want, in order to speak our piece about seropositives, must derive from the permanent mystery of life. This truth, which is brought out by the disease, reminds us that the person living with AIDS is not a half-citizen, or the wreckage of a citizen, but rather a citizen in a special situation. Precisely because this person is not shipwrecked on the shores of productive society, he or she is also not above good and evil. His or her enemies, where both discrimination and exile are concerned, are piety and self-pity, pity and a refusal to become involved. Strength can only come from critical and self-critical awareness.

If a person living with AIDS passively accepts being a visual percept of the look of the age, any relationship he establishes is a trap. When he or she enters into a therapeutic relationship with someone purely as a visual percept, it is done without meeting their gaze with his or her own as agent. This two-way visual exchange is of equal value when relating to doctors, therapists, friends, traditional medical practitioners, in short, to all those around us.

I can say without fear of being too far wrong that there is a certain comfort in accepting the gentle gaze directed on us by those who love us and have chosen us as marked for death. We are flattered by a ceremony at which the deceased is present, and which is much more disturbing for the officiants than for the living corpse. However, the price to be paid for this comfort is that of conformism. It is a road of no return to the harshest regions of social death. For my part, I decided I preferred to be an inconvenient corpse. A well-behaved corpse lets itself be buried right away, with a few candles and tears.

Time of War

Disease has been explained in ways that associate all pathological processes with internal wars between the body and an external enemy. Certainly, the vitality of these metaphors stems from the fact that microbiology was born at a time in Western history when nationalism was gaining strength, when its brutal and lasting wars were breaking out. Western medicine became, despite its humanitarian message, a powerful instrument of war. The predominance of the image of disease as war varies from disease to disease. With HIV, the war has reached a mystical point. As a result of conditions characteristic of the end of the twentieth century, in the developed countries HIV emerged at a time when infectious diseases were no longer considered serious medical problems and one of the victories of advanced medical technology was the increased life expectancy.

HIV came as an irrational challenge. It led to a major upheaval in the theory of Western medicine. It associated sex with death. And not just any sex, but the deviant sex of gays, a group who in coming out had revolutionized the scientific concepts of sexuality. And not just any death, but a death that involved a total breakdown of the body, without any explosion or any act of heroism or acute violence, an ugly, deforming, medieval death.

It does not matter that the epidemic quickly demonstrated that its history was unrelated to the prejudiced patterns of the much publicized, obscurantist ideology of risk groups. The disease remained, in the world's imagery, an enigma. A common language in the world press, even among major scientists, made aids an insoluble mystery. Many people spoke of the disease with a certain humility, saying that it drastically undermined the traditional arrogance of medicine. In addition to the scientific revelation of a mysterious, infectious, incurable, and fatal disease, a new mythology was being born. A war was being waged against an all-powerful enemy possessing almost magical powers.

These metaphors of a mysterious war are modern, or postmodern, versions of the myth of Fall and Salvation. HIV as a mystery, presupposes blame, a victim, or perdition. And its solution calls for a hero, a saviour, or a supreme power. In this way, the incurability and the mortality of HIV came to incorporate metaphysical elements in its pathology. The mystery lay in the patient. The cure, the element of salvation, was part of the miracle. Medicine was assigned the prominent role of saviour.

Once installed as a mystery, HIV becomes a lost battle for people whose assigned role is that of the vehicle of original sin. A victim to be saved. He is thus prepared to submit to every type of therapeutic dictatorship.

Is there any possible solution? Perhaps there is, by simply saying that HIV is a disease like any other. This approach involves a policy of prevention which, in my view, is the issue that will dominate the 1990s. A policy based on the affirmation that we all must learn to live with HIV.

Within this picture of ambiguously defined mystical distortions, in which HIV became a war between good and evil, the basic formula for the ideological framework was the synthesis

AIDS = DEATH. One of the first symbols used in information programmes on HIV was disseminated by the World Health Organization. It showed two hearts, romantically intertwined, with the intersection of these organs of affection forming the almost medieval image of a skull. It was succeeded, worldwide, by vigorous publicity campaigns in which, alongside health warnings, there was a proliferation of images of tombs, crosses, coffins, withered flowers, and dead bodies.

We continue to be subjected to imagery based on the supertechnological wars which took place at the end of this century. Missiled, push-button wars where soldiers who rarely face each other are mutilated inside the armor of highly sophisticated equipment. With HIV, the patient becomes the battlefield, the landscape that dehumanizes his own emotional structure and will to live.

When I fell ill, I realized that I was not a battlefield. This was not a war, with victors and vanquished, but a lack of harmony between beings with different objectives. I developed an ecological metaphor for myself. And I saw preservation as the result of harmony and not of war, balance as the result of work and not of violence; preservation as the result of inventiveness and veneration for the real world. I created for myself a need for peace, a state diametrically opposed to passivity. There was a time when I criticized my need for solitude, born of the fear of death. I made my strong fear of death into a bridge to the pleasure of living together with others. I came to understand that I am legion. I am one of many. I felt as if the entire world were flowing through my bloodstream. And I wanted to understand this more, in order to better share this one earth with those many human beings whom we bring to life.

The Present Time

In my inner vocabulary, I say that I constantly confront the virus without any imagined fear, but also without any optimistic illusions. We are staring at each other, the virus and I. Whoever blinks first loses. It may blink first, seductively and with an air of complicity. I am going to keep my eyes open.

What I see is that to live today is, among other things, to live with HIV. I see this as part of my responsibility to myself, to my survival and to those living with me.

If there is a cure for this epidemic, it will involve a recovery and reintegration of power. Our civilization separated us from our bodies, making them mere productive machinery. It separated us from pleasure, turning it into a consumer commodity. It separated us from awareness, turning it into feelings of guilt, shame, and fear. It separated us from experience and time, turning these into a succession of empty moments. It separated us from space, turning it into an mutilated environment. The HIV epidemic is a tragic part of the evolution of these separations.

Because I have learned that I am many, that I too am humankind, such as it is, I have come to understand that what makes us a human whole is not the aspects in which we are identical, but precisely the differences that make for conflicts, disagreements, and distances among human beings. This is what unites us, through a primitive and insuperable force: solidarity. And my definition of solidarity is precisely that ability to recognize and rejoice in difference, to see ourselves in the eyes of others and recognize that he or she is different from me and yet as human as I am.

I believe we all have a right to our privacy, to secrecy, anonymity, and so on. But we do not have any right to abandon others. That could be described as a crime, as a deliberate failure to help those who are in danger. Much of the uneasy silence of people who think that talking about HIV means discussing pathology and cure, stems from violent prejudices that will have disastrous consequences. We need to describe, to denounce, to claim, to give free rein to hope.

I know that a great deal of clarification is going to be needed so that the story of this epidemic can one day be told as an example of the failure of our civilization. The politics, the ignorance, the hypocrisy, the prejudices, the vanity, the lies, the complicity with evil, the silence, the moral anesthesia, the insensitivity... I am becoming increasingly certain that the sum of society's responses to HIV will have far more serious consequences than the virus's own capacity for extermination. I am not yet sure of what we will inherit from HIV. But we need to be alert to the kind of heritage we will pass on to the post-cure era. Yes, a cure for the virus will arrive. Until then, we need to listen attentively to the confused testimony of our times.

The experience of HIV is not purely the experience of physical pain or of physical extermination, as it is often pictured. The first experience of this epidemic is one of immense moral pain that goes to the very heart of the political and poetic struggle of our century's tragedy.

The only global cure for this pain is solidarity, a broad movement capable of denying the melodrama and capturing the movement of the epidemic's tragedy. LONG LIVE LIFE!

Rio de Janeiro, November 1990

Biographical note

Herbert Daniel was a political activist, writer, and director of the Brazilian Interdisciplinary AIDS Association (ABIA), and president of Groupo Pela VIDDA (Group for the Proper Appreciation, Integration, and Dignity of AIDS Patients). He died of AIDS in 1993.