The AIDS Crisis is Not Over: 40 Years of Activism

By Kieran Robertson

Content Warning: This blog post contains discussions and depictions of death.

In the summer of 1981, 40 years ago this year, doctors in the United States first became aware that a new ailment was presenting itself in a growing number of patients. As the long weekend of July 4, 1981, began, the New York Times was the first publication to break the news with a small article titled “Rare Cancer Seen in 41 Homosexuals.” For some reason, this new unknown condition was presenting primarily in gay men, leading many to deem it “gay related immune disease” or GRID. Within a few years, it took on a more permanent, and more accurate name: Acquired immunodeficiency syndrome, or AIDS.

Because this new illness seemed to only affect the gay community, most Americans actively ignored the beginnings of a crisis. Newspapers and newscasters avoided discussions of the LGBTQ+ community, and President Reagan did not mention AIDS publicly until the end of 1985, when about 12,000 Americans had already perished. Without concrete information, many Americans came to fear the unknown. This fear, caused by and combined with homophobia, meant the gay community had to fight an uphill battle alone, without proper funding or proper medical care, amplifying the danger of an already deadly epidemic.

When the media refused to cover AIDS, community organizations protested the lack of coverage, while also providing important AIDS education that couldn’t be found elsewhere. In the Ohio History Connection’s archives, researchers can find documentation of the Columbus community’s fight to raise awareness of AIDS, including the actions of the Columbus chapter of ACT UP.ACT UP, or the Aids Coalition to Unleash Power, was first founded in 1987, in New York, with the goal of committing to political action to fight AIDS. As ACT UP Columbus wrote in their January 1991 newsletter, “…those who…have the power to quickly bring the crisis to an end need a kick in the ass once in a while…” Chapters opened up across the country, including in Ohio. By the end of 1990, there were active chapters in both Cleveland and Columbus.

Columbus ACT UP January 1991 newsletter, MSS 1150 AV.

In 1991, ACT UP New York declared January 23rd a national “Day of Desperation.” In response, Columbus began planning a protest. With winter temperatures at an average of 23 degrees in Central Ohio, about 30 ACT UP activists appeared at the Columbus Dispatch’s main offices on January 23rd. They protested what they felt was limited and biased coverage of AIDS by the newspaper, contributing to the fear and confusion that impeded the fight against AIDS.

“AIDS has killed more Americans than the Iraqi army….What if the Dispatch refused to inform you about…the American casualty rates? You would be outraged and demand change.  In the war against AIDS, the Dispatch refuses to inform you of the death toll.” – Columbus Act UP protest flyer

Unfortunately, there is no evidence to suggest that Columbus’s Day of Desperation made any of the immediate, tangible changes for which ACT UP had asked. The Columbus Dispatch did mention the event in a short column the following day, but made no commitment to refresh their coverage. It would take a relentless push of continued protest to raise awareness and make change.

As Columbus ACT UP was first forming, another important story of Ohio activism was actually unfolding just down the street. This story would soon become known not just in Ohio, but around the world.In early 1990, David Kirby was a patient at Pater Noster House, an AIDS hospice center in Columbus. Kirby, born and raised in Stafford, Ohio, had become estranged from his family upon coming out, and moved to California where he became an activist during the 1980s. When he learned he had contracted HIV, Kirby contacted his family with this news, and they brought him home.

At Pater Noster House, Kirby met Therese Frare, a student from Ohio University who was volunteering there. Frare asked Kirby if she could photograph him during his stay, and he agreed- as long as she never profited from the photographs. From his work as an activist, Kirby knew how powerful images could be.David Kirby died in April 1990, and in November 1990, an image of his last moments appeared in LIFE Magazine. Today it is estimated that over one billion people have seen this image of Kirby and his family. The image and Kirby’s story helped to humanize the AIDS crisis and encouraged research and funding. Honoring Kirby’s wishes, Therese Frare has never collected a cent for the photographs. Kirby continued his activism by sharing his story with the world, even after he had passed.

David Kirby’s family surrounds him as he passes away from AIDS related complications.  Photographed by Therese Frare.

Thanks to the unrelenting dedication of activists in Ohio and across the country, advances in medicine began to slow deaths related to AIDS conditions by the mid-1990s. But although cases have slowed, AIDS is not eradicated. Even though medical options now make it possible to live longer with HIV, there is still a need for organizations that can help people access that health care. Ohioans are still fighting 40 years later, in new ways.

Interested in learning more? Listed below are resources for future reading, and organizations doing this work today:

Equitas Health
Cleveland AIDS Task Force
AIDS Task Force of Upper Ohio Valley
History of David Kirby and Therese Frare
ACT UP NY Day of Desperation
How to Survive A Plague

Posted September 22, 2021