The Power of an 'HIV Goddess'

Stricken With AIDS, A Filmmaker Brings Infected Women's Plight Into Sharp Focus

Sharon Sopher, right, and Elizabeth Ventura take in Sopher's photo exhibit of women living with HIV and AIDS. The exhibit, along with a screening of Sopher's documentary, were held at the Department of Health and Human Services. (Michael Williamson -- The Washington Post)

Abillowy white nightgown reveals what is usually covered: the reddish mound of tissue and fluid bulging from Sharon Sopher's back at the base of her neck.

"Feel it," offers Sopher. She wants her visitor to get to know this "buffalo hump" that is a common side effect of the many medications she takes.

It is the same with the clumpy fat around her midsection -- another side effect, called lipodystrophy; another physical attribute she has no inhibition about showing. And the concaveness left on her arms and legs from the strange shift of her body fat -- she shows that, too.

She's got her left arm in a makeshift sling (the belt of her green bathrobe) because she strained her shoulder while traveling to the District from her home in Madison, Wis. The wasting of her body's muscle mass leaves her susceptible to such injuries.

So here she sits, virtually fuming, trapped inside her room at a Holiday Inn -- defeated, at least temporarily, by this day's skirmish in her battle with AIDS.

For five hours she holds forth -- intensely, angrily, manically, thoughtfully, with a certainty in the rightness of her cause. Somebody's got to sound a louder alarm about women and AIDS, and Sopher has decided it might as well be her.

Somehow she will make it through this setback. A friend will come down from New York to help her get dressed and set up her photo exhibition across town at an event where her latest documentary will be screened.

So Sopher will ignore the pain. She will buck up and fight back, for this is what she has spent decades doing: breaking down barriers, scaling obstacles. An Emmy-winning television producer and filmmaker in the 1970s, '80s and '90s, Sopher, 59, spent her career filming the stories of the world's faceless and oppressed.

She did that in South Africa during white minority rule. Her 1986 documentary, "Witness to Apartheid," exposed the state's brutality against blacks. Not surprisingly, it was banned in South Africa, but it raised international awareness of apartheid's depravities and earned her an Oscar nomination.

Now, after 30 years of turning her camera on others, Sopher has turned it on herself. In a seeringly frank and raw documentary, she has produced what she calls the first film by and about a woman with AIDS. Others have raised their voices about women's vulnerability to AIDS, but for Sopher those voices have not been urgent enough, desperate enough.

"God knew what he was doing when he gave it to me, 'cause I know what to do with this" disease, she says. "It would be irresponsible of me as a journalist to not do this story."

Her film is called "HIV Goddesses: Stories of Courage -- Diary of a Filmmaker."

It depicts her life of traveling and filming in Africa, then falling ill, discovering her disease and struggling to regain her health and some dignity and to go on with her life and work. She hopes it will be the first of a film trilogy about AIDS in America. She'd like to tell the story of betrayals: of women infected by their husbands. And she'd like to tell a story to warn young women and teenagers of their vulnerability to the disease.

There's also the photo exhibit of women with AIDS called "HIV Goddesses: America's Newest Faces of AIDS" and the book she'd like to do and the whole genre of words and images she hopes will emerge to support women with AIDS.

But first, she needs funding.