At a recent conference in Buffalo, N.Y. Chris Babick, Executive Director of the PWA Coalition, and I were presenting talks on the mental health needs of people living with AIDS. Chris spent most of his talk urging the mental health professionals in the audience to foster a sense of self-empowerment in their clients with HIV/AIDS. During the question period, a woman asked if we could give some practical examples of what self-empowerment for people with HIV and AIDS might look like. On the ride to the airport Chris and I continued to discuss the whole concept of PWA self-empowerment. This article is a direct result of that conversation.
In June, 1983, the National Lesbian/Gay Health Conference and AIDS Forum met in Denver. At that conference PWAs from around the United States caucused and developed the historic now famous "Denver Principles" which have become the basis of the PWA self-empowerment movement. PWA pioneers Dan Turner, Michael Callen, Richard Berkowitz, Artie Felson, Bobby Reynolds, Bobbi Campbell, Phil Lanzaratta and Bob Cecchi were all instrumental in articulating self-definition and self-empowerment for people with AIDS. Nine 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 infantalize them. People with HIV/AIDS need to learn to view themselves as the experts about what they need and what is involved in taking care of themselves. Once this attitude develops, the PWA will need to be quite vocal about what his or her needs are. Unfortunately, this often has the effect of making other people uncomfortable around the person living with HIV/AIDS.
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 what's best for us spiritually; a therapist what's best for us emotionally or mentally. Thus, traditionally an expert has been someone else whom we were taught to defer to and trust unconditionally. 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 mutuallydetermine 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. This change in attitude from passive patients to active consumers of health care has often been an uncomfortable transition for some physicians, many of whom are accustomed to being the person in charge, and having all the answers about medical care. The self-empowered person living with HIV/AIDS is a very sophisticated consumer of medical care. The self-empowered person views him/herself as an equal to the physician 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'tblindly trust a physician, 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 for AIDS/HIV by reading Newsline, AIDS Treatment News, GMHC'S Treatment Issues and The Project Inform Newsletter. If you have a computer and access to the internet there are many sites full of up to the date AIDS treatment information online.
Obviously no amount of reading will replace your need for a knowledgeable physician, but the reading will shape how you engage your doctor and work with him or her. Once you become committed to learning about various treatment options, both traditional and nontraditional, FDA-approved and those not yet approved, you will need to establish a relationship with a doctor who will encourage you to explore what is available and then come back to discuss it. On more than one occasion I have heard PWAs discussing an article they had read about a possible new treatment, which they made a copy of and sent to their doctor with a note asking him or her to read it prior to their next appointment, so they could then discuss any possible relevancy to the PWA's condition.
Some further examples of behaving in a self empowered way are as follows. You decide not take any retrovirals (AZT, DDI or DDC) even though your doctor urges you to and feels it is in your best interest to do so. On the other hand if your CD-4 cells are at a level that your doctor feels there is no reason to begin antiretroviral therapy, you may decide that you want to be very aggressive in early intervention and tell your MD that you wish to begin this form of treatment. The point of this is not that you develop an adversarial relationship with your physician, but that he or she is someone who respects you for taking an active and particpatory role in your health care.
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 AIDS/ HIV. I know several people who after a diagnosis of full blown AIDS, applied to and completed graduate programs, changing their careers. Others have begun new friendships or major love affairs.
But even 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. Some people feel that ending their own life at the time they determine there is not sufficient quality in their life to justify continuing to struggle 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.
One of the most inspirational, life-affirming and self-empowering actions that increasing numbers of people living with HIV/AIDS are taking is to confront their dependence upon alcohol and/or "recreational" drugs, and to take the actions necessary to live sober. There are now special interest Twelve Step meetings for people with HIV and AIDS who are in recovery from alcoholism and drug addiction. It is in these rooms that large numbers of individuals find the tools, faith, hope and fellowship to face the daily challenges, indignities and ultimate crises that AIDS have brought them.
Models of self-empowerment surround us, both within and outside the PWA/HIV community. Channeling anger at government inaction through lobbying and other more direct political action like that engaged in by ACT-UP, are wonderful examples of transforming powerlessness into self-empowerment. Self-actualized lesbians and gay men do not allow other people's bigotry or violence against them to go unchallenged any longer. When women, members of sexual, racial or ethnic minorities demand equal opportunities and refuse to compromise, they are behaving in self-empowered ways. This obviously makes some people feel uncomfortable and/or threatened. It is these models that people living with HIV/AIDS need to study and emulate in order to insure that you are not trusting your well being or your very life to the good intentions of someone else. As Eldridge Cleaver once remarked, "If you are not part of the solution, then you are part of the problem."
Published in the People With AIDS Newsline, January/February, 1992, Issue 73
©1992 Michael Shernoff