Activist at the Frontline of AIDS Epidemic Tells Her Story

Ruth Coker Burks walked right into the middle of the HIV/AIDS epidemic in the United States in the 1980s.

And while she may not have been among the researchers trying to find a cure for the disease, or a clinician desperately hoping to provide care to those afflicted, her efforts to comfort dozens of dying men in their final moments and educate those at risk for the virus make her one heroes of the crisis.

Now, she is sharing her story with the world in her new book, All the Young Men. She decided to write it a decade ago, after suffering a debilitating stroke, but her activism and advocacy work continues to this day, even as new treatments have made living with HIV possible.

“It’s education, education, education,” the 62-year-old grandmother of three told Contagion® recently. “I'm proud of my work.”

And she should be. It’s important to note that Coker Burks is not a trained clinician or social worker. Her activism started in 1984, when she was visiting a friend in a hospital near Little Rock, Ark.,and saw a door covered in red plastic sheeting with the word “biohazard” written across it. Overcome with curiosity, she walked in and found a young man literally wasting away.

She asked nurses in the ward what was wrong with him and they told her he had “the gay cancer.” Little was known about the virus at that time, particularly outside of cities such as New York and San Francisco. But what struck Coker Burks was that the man was dying alone—with no family or friends to comfort him.

It was then she decided to remain at the man’s bedside until he took his final breaths, more than 12 hours in all, an act she repeated, tragically, dozens of times, just in her area of northwest Arkansas, over the next several years. Often, she reached out to many of the patients’ families, only to find that they had effectively been disowned due to their sexuality. Thus, Coker Burks became their de facto caregiver and patient advocate.

It was thankless work, in every sense of the phrase. A religious woman herself, Coker Burks, a single mother at the time, was shunned by most of her neighbors because of the work she was doing.

“You have to remember, it wasn't until, I think, 1985 before Time magazine ever used the word ‘AIDS,’” she recalled. “People just didn't know anything about AIDS. The only thing they had ever heard was it was God's punishment for their gay lifestyle. And I think that a lot of people, even the families of these men just thought, ‘They're gay. They got what they deserved.’”

However, as harrowing as All the Young Men is at times, the story does have, while not exactly a happy ending, a positive turn. Although Coker Burks did not understand the science behind the disease—at least initially (she eventually became a self-taught expert)—she knew all too well its effects. Which is why she also helped those sickened by the virus get the care they needed and educated those at risk about safe sex practices. Of course, treatment and prevention have both improved significantly since 1984.

And yet, her work continues. Coker Burks, who was honored during Pride festivities in New York in 2016, is still out there helping those in need. Today, that includes many IV drug users who are at risk for the virus.

“I spend most of my time teaching people to take care of their own bodies first,” she said. “I was never afraid that I would catch AIDS, even in the beginning. Now, science has made my job [sitting at patients’ bedsides] functionally obsolete, which is a wonderful thing.”