Kansas educator, author explores heartland history of HIV, AIDS in new book

Katie Batza, an associate professor at University of Kansas, publishes "AIDS in the Heartland" about how the pandemic fostered development of coalitions outside East and West coast hotspots that offer lessons for engaging in LGBTQ politics. (Photo by Tim Carpenter/Kansas Reflector)

LAWRENCE — Katie Batza’s first memory of HIV and AIDS was as a pre-teen church volunteer helping her mother deliver Meals on Wheels to a man facing death.

She was 11 years old and her politically conservative Catholic mother was dedicated to making certain those struck by the pandemic were treated with kindness, empathy and love.

HIV and AIDS, first recognized in the early 1980s, emerged as a lethal disease most commonly contracted by men having sex or addicts sharing needles to do drugs. The disease’s learning curve meant it was common for people to mistakenly believe the virus could be contracted by touch. Doctors and nurses were scared to treat the sick. The general public was profoundly alarmed. In partisan circles, AIDS was a vehicle of political attack.

“We were in charge of visiting this young man with HIV, who was in hospice,” Batza said on the Kansas Reflector podcast. “My mom really wanted to make sure … that the person felt like we weren’t afraid of him, that we could be friends with him. To try and be gentle to him in the final, you know, weeks and months of his life.”

She put aside medical trappings of a life ebbing away, and would sit with him, play Legos and chat.

“I learned that his family wasn’t speaking to him and he was relying on people like my mom to kind of help him in the final weeks,” Batza said. “It was a formative memory for sure.”

Afterward, she found reason to explore shelves of the library to learn about LGBTQ+ history. She was deeply disappointed by the lean offerings.

“In that moment, I thought, ‘This isn’t right. This isn’t good. I need to figure out how to fill this bookshelf,'” Batza said.

 

Heartland answers

Decades later, Batza has become a researcher, writer and teacher on the history of this breathtaking disease estimated to have taken more than 40 million lives worldwide so far.

Batza, associate professor of women, gender and sexuality studies at University of Kansas, recently published “AIDS in the Heartland: How Unlikely Coalitions Created a Blueprint for LGBTQ Politics.” It explores the pandemic from perspectives of family, friends and others who grappled with AIDS far from population epicenters for the disease in San Francisco or New York City.

Library shelves aren’t as bare as they once were, but Batza said there was a need to help fill gaps in medical, religious, social, economic and political history of AIDS in the heartland.

“Even historians who study HIV and AIDS, they kind of gloss over the middle part of the country as a place that was really not impacted,” Batza said. “That does a huge disservice for the history that is here, as well as the people that are here fighting to make sure that the AIDS epidemic doesn’t kind of rear its ugly head again.”

For the book, she was able to draw upon oral histories, interviews and archived material at KU.

She discovered religious organizations were key in regions of the country that didn’t have a large social safety net to serve the mostly gay men struck down by HIV and AIDS. Grassroots systems did emerge in Kansas and elsewhere, she said.

“There were several of the people that I interviewed for this book who said without religious organizations there would not have been a response to HIV in this region,” she said. “Churches, synagogues, convents, these are all places that kind of had resources, whether it’s church vans or extra rooms in the convent.”

In Topeka, Westboro Baptist Church led by the late Rev. Fred Phelps offered Kansas a unique and tragic response. Phelps’ followers picketed funerals of people suspected of dying of AIDS. They sang abusive songs, hoisted disrespectful signs and stomped on the U.S. flag. Their funeral picketing was challenged in court and declared constitutional by the U.S. Supreme Court.

“Some of Fred Phelps’ people still kind of haunt the hills of Kansas,” Batza said.

She said Wesboro’s confrontational style fostered the formation of unlikely coalitions in the Midwest.

“You saw drag queens and motorcyclists kind of use their motorcycle engines to rev out the noise and drag queens would make these elaborate costumes with big wings to visually block off the protesters,” Batza said.

 

Hearts and minds

She said in less densely populated areas of the country there was cross-pollination of activists. In some instances, the same people in a community were involved with a series of health care, housing, transportation or religious organizations. It was amazing to seek how personal connections created a holistic approach to the HIV and AIDS crisis that wasn’t matched in bigger cities, she said.

In terms of heartland medical care for people with HIV or AIDS, there was no mirroring New York City or San Francisco where wings of hospitals were devoted to this pandemic.

Kansas did have Donna Sweet, a renowned Wichita physician who in the early 1980s was one of the first doctors in Kansas to treat patients with HIV and AIDS.

She cared for patients all over the state and led initiatives to educate others about a disease that has been transformed over the decades from an almost certain death to a preventable disease that also can be treated as a chronic health condition.

“She would literally work with farmers to find crop dusters who could pick her up and take her to farms and fields so that neighbors didn’t necessarily have to know what was happening,” Batza said. “She really did the work of changing the hearts and minds of people, you know, one person at a time. I think that kind of really grassroots effort of educating can’t be overstated.”

 

Politicized immediately

Batza, who is in her 12th year at KU, said this generation of college students know what a pandemic looks like after experiencing COVID-19. But many students have shared their dismay at hostility directed at people suffering HIV or AIDS, she said.

It can be difficult to contemplate that men and women with such a debilitating disease were abandoned by their families and friends or that hospital personnel were afraid to touch them or deliver food to them.

“It’s really a big ask for them to grasp the full scope of the early HIV-AIDS crisis,” she said. “They did not comprehend the extent of the stigma and the fact that people could get kicked out of their jobs and houses.”

In hindsight, it was inevitable HIV and AIDS would be political dynamite.

“An epidemic of any kind becomes politicized almost immediately,” she said. “Deploying shame as a political tactic … was pretty helpful for some people who were in politics at the time. But as a public health strategy, obviously, it’s proven to have failed several times over, because in ostracizing people, you’re not willing to talk about how transmission happens, how to prevent it from spreading to more people.”