Opinion : In Praise of 'Difficult' Women: The Women of ACT UP/NY Fight Back! Fight AIDS! - by Terri Wilder

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April 21, 2014

In Praise of 'Difficult' Women: The Women of ACT UP/NY Fight Back! Fight AIDS!

by Terri Wilder

An AIDS educator on why she wants women to share their HIV stories.

Terri L. Wilder, MSW
Terri L. Wilder
“Well-behaved women seldom make history.”
— Laurel Thatcher Ulrich, 1976

In July of 2013, I attended my second ACT UP/New York meeting. I had moved to New York City from Georgia in the summer of 2009, and after almost four years of living in a city with a frustrating HIV care and prevention system, I decided it was time to join ACT UP and help change the status quo. I was shocked that very few women were in attendance, but was happy that there were more people in the room than during my first meeting several years earlier. I found it a little hard to connect until I joined PHAG—the Prevention of HIV Action Group, a committee of ACT UP/NY.

This past January, a bunch of us decided to attend the "How to ACT UP" program at the New York Public Library (NYPL) to support ACT UP member Mateo Rodriguez. Mateo had been invited to speak at this program, a program in collaboration with the "Why We Fight: Remembering AIDS Activism" exhibit at NYPL. As I was sitting in the audience listening to the panelists describe their experiences with outreach, planning demonstrations, working with the media, and civil disobedience, I began to think about all of the untold stories of women AIDS activist. After the program, I approached Jason Baumann, the curator of the NYPL exhibit, and I told him that I had an agenda: I want to hear the stories of ACT UP's women.

I explained to Jason that I was writing my dissertation on the women of ACT UP using interviews from the ACT UP Oral History Project, and told him that I wanted to learn more about the women involved in this historic social movement. After that conversation with Jason and a few phone calls later, I became the curator of the NYPL's "Women of ACT UP" event. Jason and I worked for almost three months to put together a knockout panel of women.

***

Let me go back to explain how I got here. Strong women run in my family.

My great-grandmother ran for the U.S. Congress in Georgia—she didn't win. She was, however, written up in our local newspaper for wearing pants in Marietta Square. It seems absurd to think that a woman wearing pants was controversial—I guess it was a slow news day. My grandmother ran her own business and raised four children. My mother told me that a medical provider wanted to put my uncle, who had learning disabilities as a child, into an institution. My grandmother was absolutely not having any part of that, so she started an organization for children with learning disabilities.

Information about HIV/AIDS first entered my life in December of 1989. I was at the University of Georgia in Athens, finishing my bachelor's degree in social work. I had to sign a final form at the school of social work in order to graduate, and as I exited the building I noticed a pink brochure on a coffee table in the lobby of the school. It was a brochure for AID Atlanta's Action and AIDS Awareness Seminar.

I remember thinking "hmmm," that's weird—I'm about to graduate with a social work degree and we haven't talked about HIV/AIDS in any of my classes. I decided that I should go to this awareness seminar, because I most likely will have a client with HIV at some point in my social work career. I asked my eccentric, supportive, musician father to go with me. I was a little nervous and didn't want to go by myself.

Around this time I started hearing about women with HIV who were dying—but they weren't being diagnosed with AIDS. They couldn't get approved for things like Social Security and Medicaid because they didn't have an AIDS diagnosis. There was something deeply wrong about this and it was wreaking havoc on women's lives.

I became angry thinking about the treatment of these women and submitted an article to Flagpole Magazine, an Athens, Georgia, weekly that covers music, art, theater, movies, books, and politics. The article was titled "Women Don't Get AIDS, They Just Die From It"—a slogan taken from an ACT UP flyer I had seen.
Petition to expand definition of "AIDS"

From 1992 to 1996, I worked in HIV and women's health in Minneapolis, Minnesota. In 1998, I was offered a job at AIDS Survival Project (ASP) in Atlanta, Georgia. My boss, at the time, was obsessed with ACT UP. He had been in ACT UP Atlanta and was very familiar with the history of AIDS activism. He coordinated our advocacy committee at the agency and was arrested occasionally.

In the years that followed, my work in Atlanta and New York taught me the significance of the polite kind of activism (i.e. going to the state capital in a suit to talk to legislators) and its limits. I could see why street demonstrations and an inside/outside strategy was sometimes needed. During this time, I was increasingly aware that women's contributions were not being proportionately celebrated in the "anniversary chronologies" of the AIDS fight.

In 2007, when I returned to Georgia to continue classes in my graduate program, I received an email from a girlfriend that I hadn't seen since the 1990s. We had worked together when I was a teenager and stayed friends while I was an undergrad at the University of Georgia. In the mid-1990s we lost touch. She got married and had children. I went to graduate school, moved to Minnesota for four years, moved back to Georgia, and continued my work in HIV. She is an amazing person—one of those people that everyone in the room is drawn to. She was friendly, funny, and awesome to be around—I wondered why we had lost touch.

We set up a time to talk by phone and she told me about her life, her children, and her divorce. I told her about my life in Minnesota, the men I had dated, and my current graduate program. At some point during the phone call, she told me that she reached out to me because she wanted to talk with me about something. She told me that she had tested HIV positive. She had found several of my HIV-related articles on the Internet while searching for information and thought it was a sign for her to contact me. As soon as we hung up, I began to cry. I cried off and on for a month over the news. She almost died because they couldn't figure out what was wrong with her. Nobody thought to test her for HIV. I blamed myself for her acquiring HIV. I thought that if I had stayed in contact with her through the years, this would have never happened. I was irrational in my thoughts and was angry that one more person in my life had been diagnosed with HIV.

***

All of these memories were with me as I planned the NYPL event, which was held Tuesday, April 1. The panel of veteran ACT UP/NY women activists, including Jean Carlomusto, Heidi Dorow, Joan P. Gibbs, Terry McGovern, Patricia Navarro, Karin Timour, and Maxine Wolfe, discussed tactics and strategies used during the early years, the demonstration against Cosmopolitan magazine, the "Day of Desperation" actions, the four-year campaign to change the definition of "AIDS," the litigation pursued, the fight for insurance benefits, the power of video activism, and their experiences in ACT UP. The panel was moderated by Sarah Schulman, co-director of the ACT UP Oral History Project.

Watch the event:

Sitting in the audience I was full of pride. I had moments of laughter and tears listening to these women's stories. Patricia Navarro told the audience about her life as a women's activist who participated in the abortion rights movement and that when her son Ray was diagnosed with AIDS, she moved to New York to take care of him and joined ACT UP/NY. Attending ACT UP meetings helped her take care of Ray. It provided her with information about a confusing disease and gave her an outlet to process her emotions as a mother taking care of an adult child with AIDS.

Maxine Wolfe told the audience about the four-year campaign to change the definition of AIDS to include women-specific illnesses. Jean Carlomusto, a filmmaker, showed a variety of film clips from some of the historic moments in ACT UP.

Terry McGovern offered deep insights into her work as a lawyer, filing a class action lawsuit against the government on behalf of women with HIV to change the AIDS definition. She also talked about the work of the late Katrina Haslip, a former New York state prisoner who became a "jailhouse lawyer" and passionate advocate for the inclusion of women-specific illnesses in the Centers for Disease Control and Prevention's AIDS definition.

Karin Timour described in detail the amazing work of the insurance and health care access committee of ACT UP/NY. Heidi Dorow described her work with the "Day of Desperation" demonstration and her experiences in ACT UP, while Joan Gibbs shared personal stories of why she joined, stayed, and left ACT UP/NY. She also talked about the effects of stigma in the early years of the epidemic.

This was a historic event. It reminded me that women are powerful and contribute in amazing and unique ways to the world we live in.

***

Today, there are very few women who attend ACT UP/NY meetings. It's unfortunate, as women AIDS activists have contributed in very significant ways to fighting the AIDS epidemic. Interestingly, when we do join the fight, we are often described as "arrogant," "rude," and "classless," and I often wonder why we aren't labeled as "leaders," "champions," "visionaries," or "heroes." Bell Hooks once wrote, "Sometimes people try to destroy you, precisely because they recognize your power—not because they don't see it, but because they see it and they don't want it to exist." I think she might be onto something.

It has taken me a very long time to see myself as a woman—a woman activist who has the right to speak up and have an opinion about the world around me. Some of my friends and family may find this hard to believe, but when I was younger I was painfully shy and let people walk all over me—probably due to my acceptance of the role of women in the patriarchal South.

The women of ACT UP/NY shaped my life in very significant ways. Even though I wasn't in New York City in the late 1980s and 1990s, I was with them and watched them from across the country and honored the work that they did to save my friends' lives, my clients' lives—and my life. And even though I didn't know many of their names, they contributed to my identity as an AIDS activist and to my identity as a woman. They taught me, even though they were most likely unaware that they were teaching me. They were role models to a woman in the South who needed some encouragement to find her path and purpose in life, and for that I'm grateful.

Three days before the "Women of ACT UP" event, a local filmmaker, Harriet Hirshorn, emailed me a clip of a film she is working on about women and HIV activism in the past and present. In the final scene of the clip she sent me, a woman, Dazon Dixon Diallo, from my home state of Georgia, says, "For everything that the men have done to 'forge' the fight on this epidemic—to open the door—it will be the women who close the door on this epidemic. I'm not confused about that—at all."

And neither am I.

Terri L. Wilder is a member of ACT UP/NY and the director of HIV/AIDS education and training at an organization in New York City.

Search: Terri Wilder, women, ACT UP, New York


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