Untold story of AIDS in the Midwest ‘Heartland’ revealed in new book
LAWRENCE — San Francisco. New York. Los Angeles. Washington, D.C.
The spread and focus of AIDS always seem to encompass these coastal cities.
“I’ve read a lot of the history written on HIV and AIDS, and there’s no one talking about this part of the country. It’s almost like AIDS didn’t happen here,” said Katie Batza, associate professor in women, gender & sexuality studies at the University of Kansas.
Her new book, “AIDS in the Heartland: How Unlikely Coalitions Created a Blueprint for LGBTQ Politics,” addresses this missing narrative. While histories of AIDS in the United States typically regard the largest urban areas as epicenters of the crisis, the Midwest heartland cultivated its own distinct strategies for survival. The book is published by the University of North Carolina Press.
“AIDS has always been politicized,” she said. “From its very first reference in the press, it was instantly tied to homosexuals. Then from that, it got tied to Haitians and heroin users and those with hemophilia.
“It was this weird constellation of people, so folks could say, ‘Well, it’s impacting those people over there.’ When in reality, it impacts everyone.”
For years, the “over there” only referred to certain coastal metropolises. Those are easy to specify. The “Midwest” and “heartland” are less so.
“It tried to think of this more as a conceptual thing, rather than a geographic thing,” Batza said.
“The heartland becomes almost anywhere, except for the places that are decidedly not the heartland. We know New York City and San Francisco are not the heartland. And in terms of the larger AIDS historiography, those are the places where most of this research has been written. The heartland becomes this place that fills in all the gaps.”
The book’s subhead refers to the “unlikely coalitions” that created a lasting blueprint for an even more encompassing political movement beyond the epidemic. Batza was shocked to learn how much religious communities played a part in the Midwest response – which was a far cry from places such as New York.
“I have folks in the book who say that without religious communities, there would not have been a response,” she said.
“Everyone from the archbishop in St. Louis to random nuns to sweet Jewish synagogue ladies, all these different kinds of unlikely characters — and almost none of whom were queer — became the front lines. They had the infrastructure to provide social services, from having buses that could drive you to treatment to having extra space in the basement for a clinic to open.”
Meanwhile, plenty of infighting happened between various political groups on the coasts. ACT UP had ideas that fellow advocacy group Human Rights Campaign didn’t necessarily ascribe to … and vice versa.
“All of these groups argued over different shades of activism,” she said. “Whereas here, a lot of times they figured out how to work with each other, often in back rooms. They figured out how to deploy each organization’s respectability politics for the better benefit of everybody.”
One of the reasons Batza felt compelled to write this book, she said, is because of the response (or lack thereof) she noticed from students in her classes when AIDS was discussed.
“Particularly from our students and the younger generation in general, there’s this notion it’s not a big deal. It’s easily solved, and nobody’s going to die from it anymore,” said Batza, who also chairs her department.
She said students “are flabbergasted” to learn there were years when even in hospitals, patients couldn’t get food delivered to them by health care professionals, let alone friends and family.
“They did not comprehend the extent of the stigma and the fact that people could get kicked out of their jobs and houses, on top of experiencing this totally debilitating and rapidly moving disease,” she said.
Batza’s first experience encountering AIDS happened when she was 11 years old. Raised as a Catholic, she and her family was very active in the church. Her mother recruited the family for Meals on Wheels deliveries.
“One of the people who we brought food to was this young man who had HIV. Even though I came from a conservative place, my mom was pretty amazing and was like, ‘We want to make this person feel loved and seen. So get to know him. Don’t be afraid just because he’s got tubes and things,’” Batza said.
She recalls chatting with the man and learning his family wouldn’t talk to him.
“I remember how he would be willing to sit and play Legos with me,” she said. “We only did that for three months before he passed away. It was a formative memory for sure.”
Now in her 12th year at KU, Batza focuses on the intersection of sexuality, health and politics in the 1970s, ’80s and ’90s. Her first book, “Before AIDS,” explores the creation of gay health activism in the ’70s.
“When I came to KU, people asked me what I was writing, and, inevitably, all of them — like literally everyone who I talked to — had a story about AIDS. They were involved with their church group. They had a friend. They traveled to see this person. And I don’t mean just the LGBTQ folks I know; I’m talking about random people I would meet at the grocery store,” she said. “I think there’s really something to be learned and understood here in the heartland about how to work together.”