From the Advisory Council

By Mary Fisher

Six years after the fact, I’m still introduced as "the woman who spoke at the 1992 Republican Convention." That I would prefer not to be defined by a single, 13-minute speech does not matter. What matters is that, for the moment, some people were stunned...most into silence, a few into change.

What was stunning about that moment is not that I was so splendid, but that I was so ordinary. America has often fallen prey to stereotypes; in 1992, America "knew" AIDS was a gay man’s disease.

But here I was, undeniably infected. I’d contracted the virus not as a gay man but as a married woman. What’s more, in the context of the Republican Convention, I was an ordinary married woman: white, blonde, financially comfortable - everyone’s sister, daughter, or friend. What made some Americans listen to me was not that I was exceptional, but that I was common, that I was ordinary, that I was one of them.

During the six years since that speech in Houston, the AIDS epidemic has made me even more ordinary. Worldwide, AIDS is an epidemic of every gender and culture, but it has become increasingly a women’s epidemic and, because of women, a children’s epidemic. "Worldwide" is an important perspective not only because people matter wherever they live but also because, on a shrinking planet, what’s global today is local tomorrow. If AIDS has taught us nothing else, it has shown us that this virus pauses at no national borders.

American women with AIDS are, overall, poorer than men and consequently have less access to health care. Women with AIDS are less likely than men to be insured, more likely to lose insurance as a result of divorce or their spouse’s death, more likely to leave orphans in their wake.

One unique feature affecting women with AIDS is the matter of shame. Raised on a steady diet of Miss America wholesomeness, we were taught that to be feminine is to be perky and healthy and clean. Then came AIDS, a dirty disease contracted through dirty needles and dirty sex, producing women with AIDS who have a self-image of - what else? - a dirty woman. To seek help with AIDS, a woman must first admit that she has AIDS; to make this admission is, for many women, worse than death. Which is, ultimately, why so many choose death over disclosure.

There’s reason for hope: Medical professionals are becoming more sensitive to the needs of women, more ready to admit that women are at risk without judging them. Local programs, once shaped only to the needs of men, are starting to recognize women’s needs. And women with AIDS are, themselves, beginning to find ways to create networks and community.

But hope is hard to hang on to. Funding for AIDS is a gamble in today’s political climate. AIDS death rates in 1996 and 1997 tumbled in the United States in response to new medications, but those rates have turned upward again as protocols have run their course. While the nation has been lulled into the false belief that we have defeated AIDS, those who suffer the virus know the realities.

We are ordinary people in need of extraordinary leadership. Some leadership must come from places such as the Harvard AIDS Institute, which can educate both the AIDS and the policy-making communities about the realities of the epidemic. Some must come from voices we’ve not yet heard in Washington: We are growing increasingly desperate to hear a passionate, senior policy voice demanding that AIDS be a priority, now. Some voices must come from the media, which has not adequately challenged the myth that "AIDS is as good as over." And some must come from us, the pilgrims on the road to AIDS. Because, if we are silent, we will also soon be dead.

Mary Fisher
Member
Harvard AIDS Institute
International Advisory Council