Some of the frontline responders who are part of the HIV/AIDS Caregivers Oral History Project.
Some of the frontline responders who are part of the HIV/AIDS Caregivers Oral History Project.

By Myra Billund-Phibbs

Home care nurses caring for some of the first AIDS patients in Minnesota; frontline harm reduction workers developing strategies to help prevent viral transmission among people stigmatized by mainstream health systems; and community health workers’ efforts to increase awareness about HIV/AIDS among immigrant communities who would otherwise have been left out of English-only public health initiatives.

These are among the stories collected in the just-launched HIV/AIDS Caregivers Oral History Project.

This new digital resource, part of the Tretter Collection in GLBT Studies, consists of 34 recordings and transcripts of interviews with individuals who have worked to provide services to HIV+ people and people with AIDS in Minnesota. The collection tells a remarkable story about the broad-ranging work of Minnesota’s HIV/AIDS activists and caregivers — those dedicated to preventing HIV/AIDS infection, educating the public on the virus, and caring for the sick.

The project demonstrates that — in the face of a public health crisis and with an insufficient response from the powers that be — people can come together to build solutions and provide care and support for those who need it. The volunteers of the Minnesota AIDS Project did just that; Sue Purchase and the frontline harm reduction workers who formed the grassroots group Women with a Point did that; affordable housing advocates like Lee Lewis did that. As did so many others whose stories are documented within the HIV/AIDS Caregivers Project Collection.

The collection is available now thanks to the hard work of a small team of dedicated people; I’m proud to say that I was part of this team. The interviews that comprise the HIV/AIDS Caregivers Oral History Project were undertaken between 2013 and 2016 by a diverse project team of oral historians, health care workers, and scholars, including Emil Angelica, Andrea Klein Bergman, Peter Carr, Jada Hansen, and Barbara W. Sommer.

Highlighting those who confronted HIV/AIDS crisis in Minnesota

The goal of the project (which received support from the Ramsey County Historical Society and a Minnesota Historical and Cultural Heritage Grant) was to document the work of doctors, nurses, community health workers, case managers, educators, affordable housing providers, harm reduction workers, and clergy members who confronted the HIV/AIDS crisis in Minnesota from the early 1980s into the 2000s.

I joined the project after receiving Philanthrofund’s 2019 James Quinn Award. Over the course of two months, I edited and created access copies from the raw interview recordings. I also wrote and edited summaries and created standardized item-level metadata for each interview.

As soon as I began to listen to the interviews  and read the transcripts, I was struck by their breadth and by the importance of the work they documented. I became overcome with emotion as I listened to story after story of radical empathy and care for people left behind by a society that considered them an acceptable loss. I was flooded with joy and gratitude hearing of the often-thankless work of so many unsung heroes who crafted ingenious and brilliant community responses to an unprecedented health crisis. I was left enraged and embittered by tales of stigmatization, institutional homophobia and racism, and public hysteria and ignorance.

Project launches in the middle of another public health crisis

I find it significant that these interviews are being released in the midst of yet another unprecedented public health crisis. Many comparisons have been made between the current COVID-19 pandemic and the early years of the AIDS crisis in the United States.

Although I do not wish to overstate the parallels between the two crises, I think there’s some truth to this comparison. In the first two decades of the crisis, AIDS sickened and killed people considered disposable by mainstream society: gay and bisexual men, sex workers, drug users, Black women, and the disabled, among others.

In 2020, COVID is similarly sickening and killing those already disenfranchised and exploited in society: low-wage workers, prisoners, and people with complicating conditions such as diabetes and high blood pressure, many of them suffering as a result of institutional and environmental racism, intergenerational poverty, and the lack of a social safety net in this country.

Those with the luxury of avoiding the subway and the bus are safer. Those who can work from home instead of stocking shelves or bagging groceries are safer. Those who don’t have health conditions exacerbated by an unjust and racist society are safer.

Yet whatever may be lacking from top leaders, I recognize in both crises that coordinated responses led by nurses, public health workers, doctors, and researchers can save lives and create a new world. The caregiving provided by Brian Goodroad and the ministry of Sister Joanne Lucid, the community health work of Scott Bilodeau and Dr. Alvine Siaka, and the groundbreaking research pioneered by Dr. Frank Rhame (all of which are documented in this collection) were examples of this.

Collection illustrates importance of educators, activists

Indeed, this collection illustrates that — while communities may not get the support they need — an army of educators, prevention workers, and activists can work to bridge that gap. This is visible in the prevention efforts of Val Smith Brown and Juan Jackson, the critical support and organizing of Sharon Day and Nick Metcalf, and the rural organizing of Linda Brandt and Clint Lende — all of whose work is also documented in this collection.

I hope that you will have the opportunity to  engage with and learn from these incredible interviews, as I have. I believe they contain a wealth of knowledge, power, and love — the three things we need to harness most right now.

Go to the HIV/AIDS Caregivers Oral History Project Go to the project finding aid

About Myra Billund-Phibbs

Myra Billund-Phibbs is a community archivist currently working as Project Assistant to the Tretter Transgender Oral History Project. She previously worked as a volunteer and student archives assistant with the Tretter Collection in GLBT Studies, where she processed a variety of collections of Minnesota’s GLBT history. She has also worked as an oral historian, researcher, and freelance writer of the social history of the Twin Cities. She lives in Minneapolis.

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