Few people remember the time when someone receiving an AIDS diagnosis could expect to die within a few months, many times alone and without care.
Chad Goller-Sojourner remembers it because he was living in New York City during the AIDS crisis of the 1990s. The Seattle-based writer, performer and educator will share his experience in an oral history performance tonight in Lewiston.
Goller-Sojourner moved to New York City in 1992. As a gay black man in a time when it wasn’t acceptable to be so, he was battling issues of self-worth and identity as the AIDS epidemic was reaching its peak; in 1995, 50,000 people died from AIDS. Goller-Sojourner found himself at “ground zero” in the crisis, surrounded by those suffering from a disease that hit fast and hard and a system that wasn’t willing or able to help.
Though Goller-Sojourner himself was never HIV positive, his experience was dark and intense. The new and unfamiliar disease was suddenly everywhere, and entire communities of people were dying in a short amount of time. For awhile, Goller-Sojourner attended multiple funerals a week of people who had died from AIDS.
“A lot of people were close to my age,” Goller-Sojourner said. “These were men who were just beginning to live their life.”
It was also a time when gay people — even those without the disease — were shunned and had few rights. And though people were becoming familiar with the disease, there was an excess of misunderstanding and a deficit of care and treatment options. As a result, many people who were HIV positive were on their own.
“I don’t think people realize how dark this time was,” Goller-Sojourner said.
Because AIDS was not well understood, those with AIDS were often denied care, even by medical providers. Nurses would refuse to enter rooms with those who were HIV-positive; dentists wouldn’t treat patients who were HIV-positive and many funeral homes wouldn’t accept the bodies of AIDS victims. Because of this, many who diagnosed with AIDS wouldn’t even seek care, knowing they wouldn’t likely receive it, Goller-Sojourner explained.
Those who sought treatment faced overwhelming obstacles. Overcrowded and underfunded hospitals might take 24 hours to admit a patient and then keep them in a hallway because there were no rooms. The first antiretroviral drug used to treat AIDS cost $10,000 a year and was so toxic, many people wouldn’t take it. Because the disease hit so suddenly, it was common for people to be sick at the same time as their partner, so that the dying were the only ones left to care for the dying.
Black men like himself faced even greater odds. White people, he said, were more likely to have access to better treatment because they were more likely to have access to money — either they had money or someone who cared about them did. For many, this was the difference between life and death.
Even with resources, the experience was different for black people. White gay men saw a system that used to work for them that needed to be fixed, Goller-Sojourner said. Women and people of color saw a system that had never worked for them in the first place.
The AIDS crisis brought out the worst in people, he said, but it also brought out the best. The communities affected by the disease rose up to help each other and speak out on patients’ behalf. Goller-Sojourner and others joined ACT UP, a political group that sought to end the AIDS epidemic. People who were dying gave their medicine to those who couldn’t afford it, in hopes it might work for them. Lesbians cared for and took on a mother-like role to the dying, many of whom had been disowned by their own mothers.
“There was certainly a sense of community. People took care of each other,” Goller-Sojourner said.
Goller-Sojourner himself attended countless funerals for those he didn’t even know as a way to bear witness to their life and suffering. And because of his Christian upbringing, he found himself in a role that was the closest thing to a pastor that those dying would have.
Much has changed over the past 25 years, especially for homosexuals and those who are HIV-positive. Goller-Sojourner attributes much of that to the work that was done during those difficult years.
“A lot of good things were done. We changed the landscape and also the moral compass,” Goller-Sojourner said.
It’s a story that many are unaware of, Goller-Sojourner has found, and that’s the reason he continues to tell it on the stage, using historical photos and videos to present the narrative.
IF YOU GO:
WHAT: “Marching in Gucci: Memoirs of a Well-Dressed Black AIDS Activist” by Chad Goller-Sojourner.
WHEN: 7 p.m. Thursday, Feb. 6.
WHERE: Silverthorne Theatre, Lewis-Clark State College, 500 Eighth Ave., Lewiston.
OF NOTE: The talk is part of Black History Month events taking place at LCSC.