We like to believe that today, we have discarded Puritanical punishments in favor of a far more humane public sphere. Yet issues of stigma and shame remain powerful cultural forces that continue to shape our lives. A new study, released today by amfAR, the Foundation for AIDS Research, confirms what countless women around the nation and throughout the world know all too well: for women especially, stigma remains an intractable burden associated with the diagnosis of HIV/AIDS.
The survey finds that many respondents hold a misplaced fear of contracting the virus. Many still express discomfort in interacting with those infected with HIV. Despite our progress over the years, it seems there is still much work in the area of education that is left to be done.
Over the past quarter of a century, the world has seen tremendous advances in the fight against AIDS. While still incurable, advancements in antiretroviral therapy have prolonged life and improved quality of life among those stricken with the disease. Yet, fear, misinformation, and value judgments remain, resulting in both an added psychological burden on those living with HIV/AIDS, and prolonged clouding of our national perception of the disease. This ignorance, in the end, has prohibited our ability to effectively curtail the spread of the disease-particularly among its most starkly rising, but often obscured population, that of women and especially women of color.
Starting in the 1990s, women became the fastest growing demographic group afflicted with AIDS. Since that time, black women, especially, have increasingly become its new face. Between 1993 and 2001 alone, less than the span of a decade, the proportion of black women diagnosed with the disease jumped by 40 percent. Today, black women are some 23 times more likely than their white counterparts to be diagnosed, accounting for fully two-thirds of all new HIV infections among women. Among girls and young women between the ages of 13 and 24, fully 60 percent of new AIDS cases are found among black women and girls. And those afflicted with the disease who are 50 and over are disproportionately black and female as well. As a result of these trends, the disease remains a leading cause of death among black women in several stages of life and continues to be the number one killer of black women in their prime childbearing years.
Yet, despite the rising HIV/AIDS crisis among black women and all women, amfAR's research finds that misperceptions remain regarding how the disease can and cannot be acquired. Among women especially, AIDS is largely perceived to be an indicator of promiscuity, thus adding to the stigma associated with the disease, while simultaneously increasing women's vulnerability to its acquisition, as many apparently fail to make the link between even one act of unprotected sex and exposure to the HIV/AIDS virus. Further, some fail to perceive AIDS as a woman's health issue at all. As a result, according to Rear Admiral Susan J. Blumenthal, MD, amfAR's senior policy and medical advisor, "complacency has obscured the changing face of the epidemic and the dramatic rise in HIV infections in women." Fighting this ignorance is no longer an option; it's a necessity if we are to meet the new challenges put forth by the shifting demographical impacts of the disease.
Saving lives and making life better for those living with HIV/AIDS should be perceived as the responsibility of all of us. We must do a better of job of fighting against the ignorance that continues to put lives at risk. We must demand Ryan White-like media attention on the price of such ignorance on everyday lives, and live up to the responsibility of educating ourselves and our communities about the facts surrounding AIDS transmissions-facts we should have learned years ago, but somehow remain largely obscured. Only by taking this responsibility in both our public spaces and private places, and doing so without the harsh lens of value-laden judgments regarding disease acquisition, can we begin to make real progress in stemming the tide in the spread of HIV/AIDS. Only then can we effectively attack perhaps the equally formidable challenge of addressing lingering issues of stigmatization and all of its hurtful resulting impacts.
Today's Scarlet Letter may look a bit more like alphabet soup, H-I-V and A-I-D-S, but the penalties it purveys are no less severe than in years gone by. Shame, hurt, isolation are certainly severe costs, but when stigma results in life threatening lack-of-information, the ultimate price could very well be death.
This article was originally posted by The Women's Media Center at www.womensmediacenter.com. The WMC is a non-profit organization founded by Jane Fonda, Gloria Steinem, and Robin Morgan, dedicated to making the female half of the world visible and powerful in the media.