Sebastopol playwrights pull back curtain on HIV

Playwrights Susan Swartz and Liberty Lee were struck by these statistics:

One in four people now infected by HIV is female.

One in 10 people newly diagnosed is over 55.

To Lee, they represent a growing number of women of all ages who may be “living their lives in secret.”

Now 54, Lee was diagnosed as HIV-positive six years ago. She joined a group lunch at Food for Thought, the Forestville nonprofit that provides food and other services for people living with HIV/AIDS, and realized early on that the venue gave people a safe place to build community.

“It is so hard to live as HIV positive,” Lee said. “There is so much secrecy.”

She sought out Swartz, 71, a former Press Democrat reporter, and proposed a book or a play about the women living with HIV. The two had previously collaborated on “Juicy Tomatoes,” a play based on a book by that name written by Swartz.

They started by interviewing the women from Lee’s lunch group and told them they were producing a script about the challenges and experiences of living “positive.”

“When we went to the women, it wasn’t like pulling teeth,” Swartz said.

“They were excited that someone wanted to know about them,” Lee added.

The pair interviewed more than 25 women for the play, offering to disguise individual stories. Eleven or 12 of the characters in the resulting “People Like Us” are based on individuals’ stories; other characters are composites.

The two-act play takes place in Northern California and follows a woman newly diagnosed and feeling isolated. Characters include an immigrant mother, a middle-aged woman infected by her late husband, a former businesswoman from Africa and a grandmother diagnosed 20 years earlier and still living in the closet.

When Swartz sat in at lunches, she said, she understood just how much the women help each other and how they form “unlikely friendships, though they have different economic backgrounds and are all ages. I love demonstrating how women hang together during the toughest times with humor and friendship, and occasional song and dance.”

While an HIV diagnosis isn’t the death sentence it was in the 1980s, it still brings a myriad of treatment options, some of which can be toxic. Lee suffered a full-blown allergic reaction to her first course of treatment, for example.

The Centers for Disease Control and Prevention credits the uptick in infections to the growing number of widowed and divorced people who are entering the dating scene. Often they are less knowledgeable about HIV, less likely to use protection and less likely to discuss sexual habits with their doctors.

“More older women are becoming infected with HIV, including those living in retirement communities,” Swartz said. After menopause, women often stop worrying about using condoms, “and this is a conversation they don’t want to have. It has to do with sex, and we still don’t talk about sex.

“Women did not expect to be positive in their 60s.”

During the early days of the epidemic in the 1980s, AIDS was largely considered a “gay man’s disease,” she said. Women were “seldom a part of the story, except as caregivers, mothers and lovers of dying men.” Those with positive diagnoses attended male groups for support rather than forming their own communities.

The disease still carries a stigma, Lee said, adding that she still finds groups with LGBT members to be the most accepting. “They have learned to overturn the stigmas and live without secrecy. One of the challenges is who do you tell and who do you trust and the consequences of those choices.

“If you’ve never been stigmatized for any reason, you may not grasp the enormous importance of a safe place where you’re not being judged. We show in the play that when women get together, they find a place where there is no shame, and they take comfort in knowing they are not alone.”

The women attended a playwright forum to help turn their interviews into a script and have circulated it among artistic directors at theaters throughout Sonoma County. They recently gave a reading at Occidental Center for the Arts, and eventually hope to offer the full-length two-act play to other places around the country.

Swartz points to Tucson, Ariz., as a likely place because it has a substantial population of HIV-positive women, although she adds that the play’s audience is “everybody, especially those who think that AIDS doesn’t happen to people like us. (HIV) is still at large, infecting and killing women and men of all ages because of stigma, homophobia and general squeamishness about talking about sex.”

Adds Lee, “I just wanted to have a play to share. When the play goes up, my goal is for the audience to have a good time with a subject matter that normally makes people uncomfortable.”

For Lee, the audience is “anyone who likes to go see a good play.”

Contact Towns Correspondent Ann ?Carranza at Healdsburg.Towns?@gmail.com.