The Future of the Global AIDS Movement

A decade ago, as the global scope and impact of AIDS became evident, a remarkable period of solidarity-a global AIDS movement -- was born. This was an historic event -- a civilizational event -- of fundamental importance. Yet today only an ardent sentimentalist could deny that this period is long past. For today, fragmentation, isolation and separation dominate the world of AIDS. Indeed, it almost seems that the more the words "solidarity" and "human rights" are used, the less they mean, the emptier they feel. Today there is not one world against AIDS. And this reality of separatism and isolation threatens progress against AIDS, and is the central reason why real leadership and coherent global action against AIDS has become virtually impossible.

The loss of solidarity - the decline of a global AIDS movement - can be readily explained, and was perhaps inevitable. But we are concerned with the future. And the nature and shape of that future will depend largely upon whether we can re-create -- in today’s world -- the conditions in which a truly global movement will once again become possible.

The old solidarity -- and the capacity for global thinking and action which it created-arose in a unique historical context. First, of course, it accompanied the discovery of a new worldwide epidemic. Yet the fact of global impact, by itself, did not ensure solidarity. AIDS shocked a public accustomed to biomedical triumph, and the industrialized world, shorn of its technologic armor, was forced -- in developing prevention and care strategies -- to listen and learn from the universally available wealth of human experience and wisdom; qualities which -- in contrast to wealth or scientific infrastructure -- exist in equal abundance in all societies. Early international; AIDS conferences witnessed an exchange of experience carried out in a spirit of intellectual and social equality rarely, if ever, seen before.

Then, the World Health Organization developed a framework for common action - a global AIDS strategy -- which was endorsed -- and mostly followed -- by the nations of the world -- and which was the first truly global strategy in history. We all insisted that -- in contrast to most international health issues -- which were not really global, for they mainly affected the developing world, and were responded to by the industrialized world in a spirit of charity and humanitarianism -- AIDS was a global problem. We insisted also on the need to prevent discrimination towards HIV infected people and people with AIDS. Tolerance towards the other was understood to be a necessity, not just a virtue.

Yet even these ideas and activities would have been insufficient to launch a movement of global solidarity. To understand, to fill in the missing pieces - it is necessary -- that we speak about values and emotions. Why did so many of us feel - in joining in the work against AIDS at any level, in any place, within any discipline or organization - that we belonged -- perhaps for the first time as adults -- to something larger than a nation, an ethnic group, or a profession. We shared a feeling of participation in something universal. Deeply held values and beliefs were engaged -- about the sanctity of life, and the basic equality and fundamental dignity of people.

And these individuals feelings -- spoken or unspoken -- were shared, so that we knew somehow, together, we would, and could, prevail, even where others had failed.

For many of us, this was absolutely evident, even physically tangible: at the International AIDS Conferences of the time -- in Atlanta and Stockholm; in the rush of new and unprecedented alliances among previously isolated groups and organizations; in the people who came together in our meetings and conferences; and in the physical and emotional distance we all traveled, as we learned and understood more about the real and intimate lives of others, and of ourselves. Who among us did not change -- grow, learn, mature -- in major and life-changing ways-during this time?

Facing the new phenomenon of AIDS, old walls seemed to crumble; indeed, the image of the wall symbolized for us the discredited past, for we saw that walls served mainly to divide people, institutions, disciplines, and cultures, and in doing so, under the guise of protecting, actually created danger for those living within.

A spirit of outward moving, of discovery and yes -- a somewhat intoxicating sense of living at the frontier of a new era: and the result was a unique civilizational event; an historic shift; for out of a past dominated by local or national concerns, or by charitable campaigns to help others, AIDS began to make of global interdependence and solidarity something tangible, real, visible and alive.

This phenomenon -- this vibrant spirit of solidarity -- present in the heart and minds and actions of many thousands of people -- was the fundamental pre-condition for creating a coherent global strategy, for mobilizing countries around the world, for breaking new historical ground around issues like discrimination, and for catalyzing unprecedented trans-national, trans-disciplinary, and trans-cultural cooperation.

All that was intensifies our awareness of what we have lost. For today, solidarity has become a virtually meaningless word: indeed, the more it is used, the emptier it feels; its evocation sounds perfunctory -- part of a rhetorical litany which saddens us because as we hear the speeches, we immediately know and feel that something is wrong, discordant, disconnected, missing.

The loss of solidarity has come about through the reappearance and reassertion of status quo realities which existed before AIDS. It was as if during that first period of global consciousness, the status quos of the world stood back -- briefly -- gathering strength; they hovered over us, waiting for the opportunity to return. And they have returned with a vengeance. There are many of these status quos, including: the gap between the "haves" and the "have nots"; between scientists and activists; between men and women; and between infected and uninfected people. But beyond the details, the essence, the common characteristic of all the resurgent status quos, is that they are walls -- they separate and divide people.

Ultimately, these status quo realities propose that we can afford to forget about each other. Thus, in the world of AIDS, what was once unacceptable has become acceptable. It is now acceptable to think and live in isolation; people in the rich countries can receive treatment with whatever the latest and best science can provide; the North has resumed its limited, "charity based" approach to international assistance against AIDS; the societally-favored -- those in full possession of their human rights and dignity -- continue in their isolation from the marginalized at their doorsteps and in the streets; the biomedical research establishment can pursue its course with diminished attention to pressing societal needs; officials can speak at this Conference and elsewhere -- without fear of challenge or accountability -- as if they were activists rather than actually being responsible for policy and programs; and whoever we are, we can now feel authorized -- by the prevailing norms within the world of AIDS -- to go each our own way.

This moving apart, reaffirming boundaries between the self and the other, is neither surprising nor anticipated. Some say that the world is essentially tribal; tribalism has reasserted itself, and we have now become the many tribes of AIDS.

Of all the status quos which divide us, the gap between the richer and the poorer is most pervasive and pernicious.

Thus, biomedical advances -- which we all desire so ardently, have widened enormously the chasm between the rich and the poor nations, and between the rich and the poor within nations. The injustice is stark: drugs are available -- at best -- to the less than 10 percent of the world’s people with HIV/AIDS in the industrialized world. Yet our problem is profoundly different from all the other health conditions in which the same inequity of access of access to drugs and other medical treatment between the "haves" and "have nots" has been the tragic rule. For in AIDS, we all started in the same place: with the same lack of treatment and with the same hopes; and the unfairness has arisen right before our eyes. So the injustice -- and the separation it creates -- is all the more acutely felt, more personal, direct and real.

The global gap between richer and poorer has also been intensified by the shape and direction of the pandemic. During the period of discovery, the dominant theme was global spread; yet an ever -- increasing proportion of the pandemic -- today over 90 percent -- is in the developing world.

Of equal importance, the epidemic has evolved greatly over time within each country and community in ways which exacerbate the societal gaps. A meta-analysis of maturing HIV epidemics around the world reveals a feature of the pandemic which was previously unknown, and unknowable. In each country, where and among whom HIV first enters defines the early history of the epidemic. However, with time, as the epidemic matures, it moves among a clear and consistent pathway, which although different in its details within each society, nevertheless has a single, vital, common feature: in each society, those people who - before HIV/AIDS arrived -- were already marginalized, stigmatized and discriminated against - become, over time, those at highest risk of HIV infection. The epidemic is focusing upon those whose human rights and dignity are least respected.

A second, major, pre-AIDS status quo -- the separatism between biomedical science and societal activism -- has also reasserted itself. Science and activism speak different languages; the personal backgrounds, educational experiences, and views of the world of scientists and activists often differ markedly. For this reason, it was remarkable that in the context of an AIDS movement and emerging solidarity, scientists and activists met; and while sparks flew, their encounter - sometimes quite painful -- was also mutually strengthening and productive. Despite tremendous friction -- reflecting in part the enormous distance traveled - activists and scientists were speaking to each other: for resource mobilization, to bolster political commitment, for access to populations for scientific trials, and for discovery and availability of therapeutic agents. However, today, mutual dependencies have diminished and dialogue seems replaced by formalistic relationships, increased distance from each other, and perfunctory declarations; in short the walls on both sides have been rebuilt.

A third pre-AIDS status quo reality -- which requires separation of the infected from the uninfected - has also reasserted itself. At an earlier time, solidarity between HIV-infected and uninfected people reached an unprecedented level. Today, in the context of both a strongly asserted identity of being HIV-infected and complacency or inattention by the uninfected, the walls on both sides are rising once again. The same is true of the divisions between heterosexuals and gay and lesbian people, and between women and men.

These forms and expressions of separatism -- reflecting the return of the status quo into the world of AIDS -- have created a climate in which it is virtually impossible to articulate a coherent global strategy, or to provide more than perfunctory and formalistic leadership.

Here we are: all of the pre-existing, important, undeniable global realities which have traditionally separated us, have returned powerfully to divide us today.

As a result, at the strategic level, separatism and fragmentation dominate where once there was a coherent Global Strategy. Few -- if any -- in this room today can tell us -- clearly and coherently -- what our global strategy is today.

Currently, instead of a strategy, we have a series of tactical approaches. This loss of strategic focus is particularly evident and tragic, because in theory, global learning has worked, and we should be able to apply what has been learned to generate much more effective action. We have learned that traditional, individually-focused, HIV risk-reduction efforts, while necessary and useful, are clearly not sufficient to control the pandemic.

Accordingly, the challenge to public health has become how to identify and respond to the societal factors - beyond the individual -- which constrain and influence behaviors; in other words, public health must deal directly with the societal conditions which create and enhance vulnerability to HIV.

However, in the current climate of separatism, work to address societal factors -- governmental, sociocultural, and economic -- has been fragmented and generally ineffective. There is no common, coherent conceptual framework to describe and analyze the nature of the essential societal factors; nor is there consensus about the necessary direction of societal change required to reduce vulnerability to HIV/AIDS. As a result, the current approach is essentially tactical, not strategic; it is a collection of isolated efforts, not a public health movement; and it remains isolated from other, and broader health.

All together, this means that our global AIDS effort has become -- not more -- but less than the sum of its parts. Yet extraordinary creativity and personal commitment on the part of many thousands still remains undiminished; this conference is still the best place to come to meet and amazing concentration of truly remarkable people from around the world!

We have strength; yet for the sake of our global future, we must do more than witness the seemingly inevitable decay of solidarity. The challenge is to create, or re-create, the conditions in which a truly global movement will once again become possible.

To rebuild a capacity for global thinking and action, we need a strategic approach to restoring and reinforcing connectedness. And this connectedness is not yet about the others - it starts with and involves those of us here in Vancouver, and our colleagues working against HIV/AIDS around the world.

We have a profound historical responsibility. For if we -- concerned about AIDS and with our unique history -- cannot learn to bridge the gaps between us - to overcome the separatism -- in the context of the expanding and intensifying pandemic -- who could ever hope to do so? And in turn, when we lack internal coherence, clarity and confidence -- how can we expect to convince the complacent; how could we expect the world to understand the importance and urgency of our message; how could we carry forward a voice of authentic confidence and hope to the world?

Connectedness requires that we look into our own lives; this will not be easy, because focusing on our relationship with others requires us to face the most ancient, demanding and daunting challenge of our personal and social lives. To create a new ethnic and reality of solidarity --while acknowledging all the realities -- we must overcome, through concrete acts -- our reflexive divisiveness, honed by centuries, even millennia of traditional ways of thinking and acting.

What would connectedness mean -- for example, for people with AIDS? The question should be bluntly posed: why would a person with AIDS in the industrialized world be concerned -- directly and personally -- with the fate of other people with AIDS? The historical traditions of self-centeredness would insist that this person need only focus on him of herself -- indeed, that he or she has a right to ensure they receive -- for themselves -- the new drugs, the best support, the least pain, the longest and best possible life. Yet -- challenging the dominant paradigm of our time -- there is not also a responsibility adhering to the life of this person with AIDS in the industrialized world? Is there not a view, a perspective that proclaims that healing and care of the self cannot be complete without also caring and seeking to heal others?

This is not sentimentalism. For we know how much there really is to real life, in the effort to become a full human being. We know that true healing requires connecting with others; the creative, religious and artistic life of every culture celebrates this fundamental reality of the human condition.

To be connected is to choose life. Everyone knows this: the rich know that their separation from others is life-denying regardless of their enjoyment of rich pleasures; the North knows it lives an emptier, less life-filled existence because it separates itself from the South; women and men know that to be connected in emotional intimacy is life-giving; biomedical scientists and social activists know that denial or denigration of the other, as satisfying and reassuring as it may feel for a moment, is ultimately shallow.

This is not charity. This is not humanitarianism. This is solidarity -- which is radically different -- for it is based on the knowledge that we need the other; that we are in some basic and clear way incomplete without the other.

In 1986, solidarity arose in response to discovery of a worldwide epidemic, yet this solidarity was easier; it did not require that we define ourselves with regard to the other; for there was room for all -- each contributed her or his part within a constantly expanding world of AIDS and against a common enemy -- a global epidemic.

That for the past five years we have experienced enormous fragmentation, isolation and splitting within the AIDS world does not, nevertheless, put us back to the beginning. And it does not deprive us of hope. For having once had something extraordinary - an emerging global consciousness and conscience -- we do not start anew -- in 1996 -- back at ground zero.

Thus, to recreate the capacity for global thinking and action, we must create a new solidarity. This transformation -- from isolation to connectedness -- centrally engages us as individuals yet cannot be accomplished alone. Like love and love’s transfiguration of our sense of self, of connectedness, and of the meaning of life itself, it can be read about, discussed and even analyzes -- but ultimately, to become real, it must be lived with all the intensity and courage and energy we have.

As an antidote to isolation, as a response to fragmentation, as a pathway to seek human justice, human dignity, human freedom -- we need this ethnic of connectedness. Make no mistake -- this challenge will be deeper and more threatening to our own status quo and to the status quo of our societies -- north, south, east and west -- than any we have thusfar mounted. Yet this is precisely the difficult place to which AIDS and our history of response to it has brought us.

New solidarity must be expressed through us, through our individual acts. It does not need as global organization, charter or mandate. This is not a thought-game, or academic exercise. Solidarity -- connectedness -- must be specific and concrete. For example:

• As they have already in so many ways, people with AIDS could start, and inspire us all. For a person living with AIDS, healing the self requires caring about others with AIDS. People with AIDS -- lead the way forward -- teach us by example: give the equivalent cost of a week of treatment and provide the money for others, for cure of opportunistic infections, or relief of pain; make responsibility for global AIDS a part of individual treatment, an integral part of individual healing...
  
  
• biomedical scientists: share your most precious resource -- your time...by volunteering to work in a community-based AIDS organization; biomedical scientists in the industrialized world: visit your colleagues in the developing world, to learn about AIDS and to share your know-how;
  
  
• activists: support your biomedical colleagues by acknowledging, celebrating, and honoring the passion and extraordinary commitment that most scientists bring to their work, which goes beyond concern about academic advancement or numbers of publications; and devote some of your mobilizing and catalyzing energy to critical issues for the developing world, such as vaccine development and resources for prevention;
  
  
• women and men: it is simply essential to work together, to help identify and then release the bonds which bind and cripple men and women in their personal and societal relationships, and to identify the strengths and sources of mutual resilience.
  
  
• leaders of organizations and official institutions: consider how - in all your policies and programs - to bring people together; and stop making hollow statements, because your transparent posturing discourages and divides us; have the courage to state what you will do and be accountable for it!
  
  
• organizers of the next International Conference - in two years: create a process and a program which gives highest priority to bringing us together; reject the illusionary benefits of status quo separatism of science and society; make the next Conference a meeting that marks a new phase in our global struggle, so that all should be able to say, " I was there" when global solidarity and global movement was born.

Yes, these actions are difficult, for they require more than just putting our hands into our pocket, pulling out a sum of money, and giving it away; they require more than the too-easy exercise of blaming others; they require us to give something -- to share something -- of ourselves.

Our difficult, complex, and ultimately historic task is to build a new solidarity within the world of AIDS, without which it will not be possible to have -- ever again -- a global movement. It is up to us. We cannot look to leaders to move us beyond separatism, for leadership cannot take us where we are unwilling or unable to go.

In moving forward, we must challenge - boldly and without compromise - two of the most persuasive and powerful of all the status quos. First, we challenge the idea -- which all too often passes for wisdom - that what is, is what must inevitably be. For who are we engaged against AIDS share a belief -- indeed, to be working against AIDS we must believe -- that the world can change, that the future is not the inevitable consequence of the past, that the chains of pain and suffering we have inherited can be broken, that we can each contribute -- meaningfully -- to the healing of the world.

We will also challenge a second fundamental status quo: the idea that we are each alone, independent, isolated beings. To link the healing of the world with our own fate is our task: this reshapes the meaning of our lives as it alters our approach to AIDS.

We have the precious, historic opportunity -- here, now, today, in Vancouver -- to start -- or accelerate -- a profound transformation in the movement against AIDS. We can do this by devoting ourselves to living the tolerance, solidarity, and connectedness which is the ultimate triumph of our authentic voice. From individual acts of willful connectedness societal transformation will follow; from the prison of isolation we will re-experience the freedom of connectedness; from the poverty of separateness we will forge the future of our common effort. For the future of the global effort against AIDS is -- as it has always been -- literally in our hands. To create and build a new solidarity in the face of all the standard, historical, expected, routine and powerful status quos which seek to divide us: to contribute to that societal transformation which offers hope against AIDS and for the world: this is a task -- no, a destiny! worthy of our past, our aspirations, our commitment, our dignity and our lives.

- Jonathan Mann