Queer and Feminist Influences on Public Health in the Age of AIDS
In the 1980's, a new demand for access to healthcare emerged with the HIV/AIDS pandemic. LGBTQ+ individuals were disproportionately affected by the illness and a government that was deadlocked in the prejudices held against the queer community neglected to provide adequte resources for those affected. Healthcare systems faced similar barriers that gave way to incomplete methods of care. The combination of the two negligent institutions yielded devastating results for the people who were diagnosed with HIV and AIDS.
This research was conducted with the intention of understanding the community responses to the HIV/AIDS pandemic and the effect of those responses on public health. To do so, I utilized the Archives and Special Collections within the University Library System to study alternative press. Feminist and queer publications from this time period were communication hubs of resources and activism that fostered communities of care for all individuals who were impacted by this illness.
With the intention to increase accessibility to healthcare while decreasing the transmission of HIV, groups such as ACT UP and Gran Fury organized the community in protest of the devastation that was instigated by neglectful institutions. Feminist practices of accessing the healthcare system were adapted and disbursed through alternative press publications such as Newsline: People With AIDS Coalition of New York and On Our Backs: Entertainment for the Adventurous Lesbian. These activist publications and groups impacted both government and healthcare so much so that the effects of their actions are still felt today, from the required inclusion of women in clinical trials to the presence of designated patient advocates in the healthcare system.
Newsline: People With AIDS Coalition of New York was a crucial part of making the healthcare system navigable to people with HIV/AIDS (PWA). Within this publication, PWAs were able to find doctors and specialists as well as support groups and other information about the healthcare system.
While the population of PWA was incredibly diverse, many subgroups of this population faced barriers in seeking treatment for their illness. Women in particular had to figure out new ways to navigate the healthcare system while living with HIV/AIDS becuase it took more than a decade for women to be included in the diagnosis of AIDS. This was rooted in the diagnostic criteria being especially male facing, as AIDS was first seen as an illness that only impacted gay men.
Newsline helped to spread information about what women with HIV/AIDS would experience differently than men. The publication also had editions that were exclusive to women or LGBTQ+ people, and caregivers. Every edition that I had the oppurtunity to study has had columns within that were specific to even smaller subgroups, such as survivors of sexual violence, hemophiliacs, or pregnant women/new mothers. The document to the right is a directory of resources that was found in the back of each edition of the periodical, with support groups and volunteer programs that were availiable to PWAs that were living in New York.
This publication also worked hand in hand with organizations such as ACT UP to arrange protests that would ultimately push the Food and Drug Administration and the National Institute of Health to adapt their practices to meet the needs created the AIDS pandemic.
The above image is a postcard from the ephemera collections preserved by the National Endowment for the Arts and the New York State Council for the Arts. It documents the bus stop posters that were present in New York City from January-April 1990, stating "Women Don't Get AIDS, They Just Die From It." These posters, displayed in both English and Spanish, were one of the many protest installations created by Gran Fury, a group that emerged from ACT UP. This protest was created to call attention to the fact that women were not yet able to be diagnosed with AIDS in 1990. This was due to women not being included in diagnostic criteria that led to an AIDS diagnosis.
As a result, there were legal battles about whether or not a woman could take medical leave from her job, receive disability benefits from social security, or be included in trials to test new treatments for HIV/AIDS. These legal battles led to the National Institute of Health Revitalization Act of 1993, which required women to be equally represented in sample populations from any government funded medical research. They also led to changes in policy for the distribution of disability benefits to women with AIDS.
Other installations and protests led by ACT UP led to the FDA changing policies that would allow for clinical trials to be greenlit faster, making it possible to get drugs in bodies. The Drugs in Bodies campaign had occupied the FDA offices in Washington DC, protesters dumped the ashes of their dead lovers on the White House lawn, demanding retribution for the inaction of the government officals that were complacent in their deaths.
Protests also emerged from the article on the left, which was written by Robert E. Gould and published in a 1988 edition of Cosmopolitan magazine. The article states that women who are engaging in heterosexual, missionary style sex were not at risk for contracting HIV. The article was rife with other medical misinformation that perpetuated the stigmas surrounding the queer community and put women at risk. Follwing this article's publication, ACT UP organized an occupation of the Cosmopolitan offices in New York City. Alternative press publications produced op-eds with titles like "Don't Go to Bed With Cosmo" that dispelled the medical misinformation put out by Gould. Following this publication, there was an additional piece in Newsline that elaborated on the importance of women continuing to use barrier methods with all their intimate partners, regardless of either partners' sexual orientation.
Communities that were created by activist worldbuilding within alternative press publications were instrumental in supporting those who spoke out against Gould as they occupied the offices of the magazine that gave him a platform to speak from. This was a profound example of the organization, protest, and coverage methodolgy created by the connection of community and press.
Publications that weren't explicitly health information sources also took part in building communities and creating relationships between PWAs and alternative press. On Our Backs: Entertainment for the Adventurous Lesbian is a noteworthy example because it was a lesbian erotica magazine that created pornography that was health concious while also engaging with the community in destigmatized discussions about sex, pleasure, and queer life in the age of AIDS.
Debbi Sundahl, one of the original creators of the magazine and the editor in chief during the publication's adolescence, wrote the piece on the right to elaborate on what it as like to produce a queer facing magazine during a time in which AIDS was furthering the stigmas that already caused harm for the LGBTQ+ community.
From an archival standpoint, this publication also raised significant concerns with regard to the ethical considerations of digitizing and storing the publication. Because this research was conducted remotely via digital archives and collections, we had to excercise particular care for the subjects within the publication. My archivist mentor and I chose to digitize select parts of the run based off of what information I wanted to study, then the article scans were collected and uploaded to a virtual box that is not accessible to the public. While a digital archive would create a great deal of access to the content and broaden the audience that the magazine could meet, it would also open the women and individuals within the magazine to the public eye. While anyone could have gone and bought the magazine when it still lived on the shelves, there was a sense of community found within those who sought it out. With that community came an ethics of care, even while presenting criticisms.
If you are interested in reading more about the ethical considerations that impacted this research, you can read a blog post about the methodology that was utilized here.
About the Creator
Emily Kelly (they/she) is a student at the University of Pittsburgh majoring in Neuroscience and Gender, Sexuality, and Women's studies with a minor in chemistry and a certificate in the conceptual foundations of medicine. They plan to attend medical school and pursue a career in healthcare.
Acknowlegements
Emily would like to extend their deepest thanks to their archivist mentor, Megan Massenelli and their faculty mentor, Dr. Julie Beaulieu for their expert advice, encouragement, and the devotion of their Monday mornings to supporting this project.
They would also like to extend their gratitude and appreciation to Laura Nelson, Patrick Mullen, Jeanann Croft, Gesina Phillips, Robin Kear, Helena VonVille, and staff of the University Library System for their support throughout the semester.
Special thanks to their dog, Stink, for listening to the many excited ramblings that emerged from this research and providing feedback that was probably just a plea for more treats.