Being Alive - December, 1999
Walt Senterfitt

We are in the 19th year of awareness of AIDS in the United States. Two years into the US response, a group of men and transgender people (joined not long after by women) decided to confront the exclusion of the infected population--exclusion from "expert" panels and conferences, exclusion from health care planning, exclusion from helping to set the research agenda. While PWAs from the beginning organized to help each other, aided by cadres of sympathetic lovers and friends and family and community members, we did not at first realize that important decisions about our lives were being made without us. Fortunately, the civil rights movement of African Americans and the battle for women's legal equality throughout the last century had set a powerful example. As the ex-slave, abolitionist and black leader Frederick Douglass said, "Power concedes nothing without a struggle."

The medical, public health and research establishments were not accustomed to sharing decision-making and planning about what should be done with the "victims" of disease, the "targets" of interventions or the "subjects" (read "objects") of study. Even as these establishments were slow to react to a disease affecting most heavily people on the margins of society, they considered it only customary and natural to hold all the levers of power as the machinery lumbered into action. Not!! Their action and inaction affected our life or death.

A small band of PWAs decided to show up at an early national conference on AIDS in Denver in 1983. They drafted a manifesto, unfurled a banner and took over the plenary stage of this event. They took turns reading what has become known as The Denver Principles. The audience of social workers and doctors and nurses and gay activists was at first stunned, then rose in a thunderous standing ovation.

Here they are, as relevant as when written 16 years ago:

The Denver Principles

(Statement from the advisory committee of the People with AIDS)

We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People with AIDS."

Recommendations for All People

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

Recommendations for People with AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

Rights of People with AIDS

1. To as full and satisfying sexual and emotional lives as anyone else.
2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.
3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.
5. To die--and to live--in dignity.

The band of PWAs who unfurled this manifesto are all dead now. The movement they started, a movement of explicit self-empowerment and shared leadership with medicine and public health, one that has moved beyond AIDS to many other health and social crises, is not dead. This movement lives as perhaps one of the greatest contributions those of us living with HIV/AIDS have made to the practice of medicine, public health and biomedical research. We have said that we have the right to make the most fundamental decisions about our own bodies and lives. We have said that self-help and mutual support are powerful life-sustaining forces both independent of and linked to the treatment and other resources we can access. We have said that we have a right to be at the table with a voice and significant power when decisions about plans and agendas and resource allocations are made. We have said that research and "interventions" will be not only more equitable, but more effective if we help develop them and oversee their implementation. From the beachhead our PWA forebears established, others who have been excluded and powerless have said, "Why not?"

Unfinished Agenda

The realization of the vision of the Denver Principles is unfinished in many ways. First of all, like all beachhead gains in a fundamentally oppressive society, it is reversible and must be continually defended. This is never clearer than today when the response to AIDS has evolved from grass-roots urgency to a governmental and commercial oligopoly some refer to as "AIDS, Inc." The bureaucracies are enormous and complicated, the politics can be fierce and the money to be made is enormous (all those ads showing how "wonderful" life with AIDS drugs can be signify the tip of the $8.4 billion a year market by the big pharmaceutical companies are competing to dominate). Many of our most articulate leaders have died, burnt out, retired, or taken jobs in AIDS, Inc. where their skills and knowledge help us but the subtle pressures toward silence and conformity are immense. The leadership and ranks and arsenal of tactics need to be replenished!

People with HIV and AIDS in North America are increasingly rooted in communities of color. The PWA/HIV movement has always had individual leaders who were persons of color. The emergence of PWA/HIV self-empowerment and activist organizations comprising a majority of people of color or located in communities of color has been rarer and slower, however--not because the need is any the less or the principles irrelevant, but because such efforts face all the usual hurdles of turning despair into action into empowerment, and then some. Poverty, racism, homophobia, sexism are pervasive and nasty. There are some very strong examples of organizations of, by and for PWAs, led by and mostly representing persons of color. To name just a few, there is We the People (of the Delaware Valley Living with HIV) in Philadelphia, Women Alive in Los Angeles, Take Action South Central (TASC), also in Los Angeles, and the National Association of People Living with AIDS (NAPWA) in Washington, DC.

Taking hold of our responsibility for ending the epidemic by preventing its further spread is another item of the unfinished agenda. The Denver Principles raised this point, and most PWAs incorporate it into daily life. However, as a movement and a community we have been slow to adopt prevention as a major priority (until recently anyway), lest such efforts detract from our focus on getting better treatments or lest it increase our burden of stigma and blame by the larger society. Being Alive and other organizations have taken the lead in the past three years to change this--to find ways to remind and support ourselves in living powerfully without endangering others, to build risk reduction into long lives, and to help lead this effort as a public health strategy that has been largely ignored before.

Finally, we must share the fruits of our empowerment and the lessons learned so far with the vast number of our brothers and sisters around the world who bear the largest share of the epidemic. We must learn from them as well, what they see that we are uniquely able to do in the US for the worldwide crisis, for instance, and what sorts of help they want and don't want. There are hundreds of linkages and ways such mutual support has already blossomed, and thousands more yet to be realized.

Being Alive is proud to be a part of a tradition started by that small band in Denver and of an international community of people living with and fighting AIDS. There is much to be done, and "together we are making a difference."

Read Walt Senterfitt's prior essay for the Newsletter on the Denver Principles by clicking here

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