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What Is Self-Empowerment?by Michael Shernoff, MSW

1992

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 hi s talk urging themental 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 thewhole 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 conferencePWAs 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 thousandsof 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 isinvolved 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 aroundthe person living with HIV/AIDS.

Adv ertisement

The concept of being the expert about your own l ife is one that many people have some difficulty adjusting toinitially. 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 anexpert has been someone else whom we were taught to defer to and trust unconditionally. Questioning theopinions 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'sbest 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. Thischange 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 theanswers 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 apowerless 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 gatherknowledge about your condition and the variety of treatment options now available. Knowledge is power, andanyone 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 theinternet 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 shapehow 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 needto establish a relationship with a doctor who will encourage you to explore what is available and then come backto discuss it. On more than one occasion I have heard PWAs discussing an article they had read about a possiblenew 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 a t a level that your doctor feels there is no reason to begin antiretroviral

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therapy, you may decide that you want to be very aggressive in early intervention and tell your MD that you wishto begin this form of treatment. The point of this is not that you develop an adversarial relationship with yourphysician, 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 simplybecause 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 friendshipsor 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 whatyou 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 tostruggle is the final example of self-empowerment. For others, it i s struggling to stay alive despite enormousphysical 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 livingwith 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 andAIDS 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 crisesthat AIDS have brought them.

Models of self-empowerment surround us, both within and outside the PWA/HIV community. Channeling anger atgovernment 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 mendo 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 arebehaving 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 nottrusting 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."