Paul Kawata, the executive director of the National Minority AIDS Council, recently wrote, "as much as we want to honor and remember those we have lost to the struggle in the past 30 years, I want us to fight like hell for people living with HIV/AIDS."
I agree with Kawata – our activism has to be more than ghosts and memories, we must also support people living with HIV/AIDS to live long and productive lives. After attending the recent U.S. Conference on AIDS in Chicago, and participating as a member of the Treatment Navigating Team, I recognize that PLWHAs want a lot more than just treatment. Many of us also want and need access to health care, safe and affordable housing, food, jobs, addiction and mental health services, clean syringes, secondary prevention including condoms, freedom from stigma, discrimination and stop being criminalized for having HIV, and, hopefully, one day, a cure.
What value does activism have with PLWHAs in leadership positions? The Denver Principles are the foundation of activism and empowerment for PLWHAs. Unfortunately, it seems like AIDS agencies have lost some of that commitment to these ideals, and I doubt that the principles are included in service providers' policies or mission statements. How many PLWHAs do you have on your board? How many PLWHAs do you have among your leadership staff? Fighting like hell for PWLHAs for real-world implementation of HIV Prevention Trial Network 052 or Treatment as Prevention (TasP) to be successful, these efforts must be led by PLWHAs. Our activism must give more than lip service to the notion of PLWHAs as leaders.
In June 1983, the National Lesbian/Gay Health Conference and AIDS Forum met in Denver. At that conference people with AIDS from around the United States caucused and developed the historic, and now famous, Denver Principles, which have become the basis of the National Association of People living with AIDS, NMAC and the PLWHA self-empowerment movement.
Pioneers Dan Turner, Michael Callen, Bobby Reynolds, Bobbi Campbell, Phil Lanzaratta, and Bob Cecchi were all instrumental in articulating self-definition and self-empowerment for people with AIDS. Thirty years and thousands of cases later, self-empowerment remains one of the most crucial issues for all persons living with HIV/AIDS.
Self-empowerment in its simplest form means taking charge of your own life, illness, and care. Another way of putting it is to say that self-empowered individuals do not give away their power or allow others to infantilize them. PLWHAs need to learn to view themselves as the experts about what they want and what is involved in taking care of themselves. Once this attitude develops, PLWHAs will need to be quite vocal about what their wants are. Unfortunately, this often has the effect of making other people uncomfortable around PLWHAs.
The concept of being the expert about your own life is one that many people have some difficulty adjusting to initially. We have all been raised to believe that a physician knows what's best for our health; a priest, minister, or rabbi knows what's best for us spiritually; and a therapist knows what's best for us emotionally or mentally. Questioning the opinions of these experts was not encouraged. The blind acceptance of authority has been a fundamental component of the existing power structures in this society (and in most others as well).
Self-empowerment means that you become an active partner with those experts to mutually determine what's best for you, and/or what course of action you wish to pursue regarding your plans for the future, and treatments or lack of them. The AIDS crisis has revolutionized how many of us interact with health care professionals, including AIDS agencies that appear to be run like a business. This change in attitude from passive consumers to active consumers of health care has often been an uncomfortable transition for some physicians and AIDS agencies, many of whom are accustomed to being the person in charge, and having all the answers about prevention and treatment. The self-empowered person living with HIV/AIDS is and should be a very sophisticated consumer of services. The self-empowered person views him/herself as an equal to the physician or those in leadership in AIDS agencies and not in a powerless position simply because he/she is seeking advice or consultation from a professional with a particular area of expertise. In order to evolve into a person who doesn't blindly trust the system, you must gather knowledge about your condition and the variety of treatment options now available. Knowledge is power, and anyone can learn an enormous amount about treatments.
Self-empowerment is best exemplified by an attitude that your life is not over or going to end soon simply because you have been diagnosed with HIV/AIDS. I have been living with HIV for 28 years, since I was diagnosed with what was then called Gay Related Immune Deficiency Syndrome and told that I had six months to live. After coming out of a two-day drug induced coma, I heard one of the doctors standing around my bed say to the others, "He can't have it, he's black." Upon hearing this death sentence, I went back north where I was living, and continued to do drugs. Still alive after a year, struggling with lots of life's calamities, I decided I had to take control of my life. I went into recovery, went back to school, met a wonderful man that is my spouse today, continued along my spiritual path of recovery, got involved in AIDS activism and worked in AIDS organizations.
If a person is at the final stage of his or her illness, it is possible and important to remain self-empowered. One example of self-empowerment can be deciding to stop all treatments, knowing that doing so will hasten your death. Another example may be preparing to die at home (or in the hospital); depending on what you feel will be the most comfortable for you as well as those who are caring for you. I have supported friends that felt ending their own life at the time that they determine there is not sufficient quality in their life to justify continuing to struggle, which is the final example of self-empowerment. For others, it is struggling to stay alive despite enormous physical and mental deterioration in the hope that there may be a medical breakthrough from which they can benefit from a cure.
One of the most inspirational, life-affirming and self-empowering actions that I think an increasing number of people living with HIV/AIDS are taking is to confront their dependence upon alcohol, smoking, and recreational drugs, and to take the actions necessary to live sober. Through recovery programs large numbers of individuals find the tools, faith, hope and fellowship to face the daily challenges, indignities, and ultimate crises that AIDS has brought them. Abstinence should be the ultimate aim of the vision and goals of harm reduction.
Models of self-empowerment surround us, both within and outside the PLWHA community. Channeling anger and frustration at government inaction through lobbying and other more direct political action was historically exemplified by ACT-UP, which was a wonderful example of transforming powerlessness into self-empowerment. Self-actualized lesbians, transgenders, bi and gay men do not allow other people's bigotry or violence against them to go unchallenged any longer. When minorities demand equal opportunities and refuse to compromise, they are behaving in self-empowered ways. This obviously makes some people uncomfortable or threatened. But it is these models that PLWHAs need to continue peer activism in order to insure that we do not trust our well-being or our very lives to the good intentions of someone else.
Bartholomew T. Casimir, MA, MFTI, is presently a mental health clinician and consultant with LGBT-TRISTAR, a course of the Community Alliance for CLAS, a program of Gil Gerald and Associates Inc., and a member of the Treatment Navigators Team, National Minority AIDS Council, Washington, D.C.