"We're Not Crippled. We Have Power!"

Reggie Williams drew on black history and gay pride to fight HIV/AIDS stigma.

Posted Feb 22, 2019

Twenty years ago this month, an American hero died.

Reggie Williams was born in Cincinnati on April 29, 1951. He became aware of AIDS while he was working as an X-ray technician at Cedars Sinai Hospital in Los Angeles in the early eighties. He noticed that a lot of men were becoming ill with what was earlier known as Gay Related Immune Disease (GRID) because it affected so many gay men.

AIDS was ravaging San Francisco’s gay community by the time Williams moved to the city in the mid-1980s. In 1984, he was a member of the San Francisco chapter of Black and White Men together (BWMT), a nationwide network of social support and advocacy organizations.

After a presentation at a BWMT meeting to representatives of several AIDS organizations serving people of color, Williams offered to host another meeting at his home the following week for anyone interested in talking about the AIDS-related concerns of gay men of color. This would be the first meeting of what became the AIDS task force of BWMT/San Francisco, a group dedicated to advocating on behalf of gay men of color for services in the city.

In 1986, at age 35, Reggie Williams himself was diagnosed HIV-positive.

Pulling together the AIDS efforts of other BWMT chapters under the auspices of the National Association of Black and White Men Together, Williams in 1988 won a contract from the Centers for Disease Control and Prevention (CDC) to provide AIDS prevention to gay men of color. Together with Steve Feeback and Phill Wilson, Williams formed the National Task Force on AIDS Prevention—the first and only national HIV prevention organization created by and for gay men of color.

In 1995, I interviewed Williams for Victory Deferred, my 1999 chronicle of the HIV-AIDS epidemic and its impact on gay life in America. By then he had moved to Amsterdam to get away from the stigma and discrimination toward gay men with HIV/AIDS rampant in America. He was living with his German partner Wolfgang Schreiber—and with AIDS.

The Reggie Williams Exhibit
Reggie Williams
Source: The Reggie Williams Exhibit

Reflecting on the dark and terrifying early years of the epidemic, Williams recalled saying to himself, “If they’re not going to do it [prevention for gay men of color], then godd*mn it, we can do it for ourselves. We’re not crippled! We have power. That’s why we created the National Task Force on AIDS Prevention—to do it for ourselves.”

From its inception, the task force brought together gay men of color—including African-Americans, Hispanics, Native Americans, and Asian/Pacific Islanders—to advocate on their own behalf and devise ways to reach other gay men like themselves who felt they were not being served adequately by either gay or “mainstream” organizations in their communities. The group believed strongly that for gay men of color to be receptive to AIDS prevention messages, they would need to get those messages from other men who “looked like” them. As Williams put it, “The messenger is just as important as the message.”

For Williams, “doing for ourselves” began with honesty about one’s identity—in terms of race, sexual orientation, and even HIV antibody status. He described the liberation he felt personally because of such frankness. “I was able to walk up to the podium and say, ‘I’m Reggie Williams, a black gay man with HIV,’ instead of saying, ‘I’m Reggie Williams, executive director of the National Task Force on AIDS Prevention.’”

Williams said it always had an effect on the audience, “whether hetero, gay, white, or black.” He explained, “I didn’t look like most people’s idea of a person with HIV/AIDS since I wasn’t dragged in or wheeled out to the podium.”

Besides promoting a sense of gay pride, the task force realized that prevention education targeted to gay men of color had to build upon and support a man’s sense of cultural identity—including loyalty to his family, racial or ethnic community, and religious faith.

The organization understood that gay men of color face what Williams called a “double-edged sword”—torn as they often are between their sense of belonging to the (largely white) gay community and their racial or ethnic community, and not fully accepted in either. For this reason, the task force viewed its role as largely that of building self-esteem so that gay men of color would be motivated to protect themselves and one another against HIV. It intentionally tied together a sense of intertwined cultural and individual survival.

The task force’s operating philosophy, until its 1998 closing because of fiscal mismanagement, emerged directly from the life of its co-founder. As Williams said, “I know what it is to have low self-esteem and not feel like your life has value; I’ve been there. I grew up in the ghetto, so I know what it’s like.”

It’s instructive to recall how Williams felt about his life and experience of living with HIV, knowing the high likelihood of dying prematurely in the years before there was effective medical treatment.

“I have known many people,” he said in 1987, a year after his diagnosis, “who are diagnosed with this disease, and other terminally ill people through my profession, who hang onto this little piece of paper they call ‘hope’ in their hand. A lot of them die with it still clutched in their hand. My hope lies in the future. I don’t believe there will be a cure for me. I can take AZT or whatever drugs are developed to prolong my life for a time, but my hope is for finding a vaccine to prevent children of the future from getting HIV.”

Reggie Williams died at age 47, on February 7, 1999. For the past 19 years, the date has been marked as National Black HIV/AIDS Awareness Day—honoring a hero, carrying forward his life’s mission of preventing HIV from stealing any more black (and any other) lives, and always looking to the future for hope to face today.