How do institutions impact women living with HIV/AIDS?

Institutions—whether in the form of physical buildings like hospitals and schools, or governmental practices like Jim Crow racism and mass incarceration—are the mechanisms through which the state impacts the lives of its citizens. For most of the women involved in this project, state institutions have long been more harmful than helpful. Schools—meant to educate—did not always treat the young women as students, while prisons—meant to rehabilitate—were actually traumatizing places from which the women struggled to recover. The failure of institutions to see these women as deserving of care is at the core of their memories, even as some women recall moments where institutions helped them. One particular institution, the Women’s Interagency HIV Study (WIHS), is uniformly praised as an entity that supports and heals women living with HIV.

Schooling

School is one of the many public institutions that shaped the narrators’ experiences in good and bad ways. They shared stories about excelling in grade and middle school, dropping out of high school due to pregnancy, and attending schools that felt more like prisons. Given the various ways that racial segregation and systemic racism have affected public schooling in the United States, their narratives tell us a great deal about what it means to name structural violence as a cause of the HIV/AIDS epidemic.

Education accompanied incarceration for high school girls at the Audy Home,1968. (Chicago Tribune archive photo)
Schooling

School is one of the many public institutions that shaped the narrators’ experiences in good and bad ways. They shared stories about excelling in grade and middle school, dropping out of high school due to pregnancy, and attending schools that felt more like prisons. Given the various ways that racial segregation and systemic racism have affected public schooling in the United States, their narratives tell us a great deal about what it means to name structural violence as a cause of the HIV/AIDS epidemic.

Education accompanied incarceration for high school girls at the Audy Home,1968. (Chicago Tribune archive photo)
Schooling

School is one of the many public institutions that shaped the narrators’ experiences in good and bad ways. They shared stories about excelling in grade and middle school, dropping out of high school due to pregnancy, and attending schools that felt more like prisons. Given the various ways that racial segregation and systemic racism have affected public schooling in the United States, their narratives tell us a great deal about what it means to name structural violence as a cause of the HIV/AIDS epidemic.

Education accompanied incarceration for high school girls at the Audy Home,1968. (Chicago Tribune archive photo)
Nowhere to go

At numerous points, the women narrators named the fact and the feeling that they had nowhere to go. This meant they faced bouts of houselessness or lacked access to treatment facilities that could care for them as women and mothers with children. Throughout their struggles, the women worked to stay focused on spaces that could be emotional refuges for them, even as affordable and stable housing, and comprehensive care, have long been scarce nationally, especially for women living with HIV/AIDS.

Demolition of Rockwell Gardens, c. 2006 (Photograph by Paul Goyette, Flickr)
Nowhere to go

At numerous points, the women narrators named the fact and the feeling that they had nowhere to go. This meant they faced bouts of houselessness or lacked access to treatment facilities that could care for them as women and mothers with children. Throughout their struggles, the women worked to stay focused on spaces that could be emotional refuges for them, even as affordable and stable housing, and comprehensive care, have long been scarce nationally, especially for women living with HIV/AIDS.

Demolition of Rockwell Gardens, c. 2006 (Photograph by Paul Goyette, Flickr)
Nowhere to go

At numerous points, the women narrators named the fact and the feeling that they had nowhere to go. This meant they faced bouts of houselessness or lacked access to treatment facilities that could care for them as women and mothers with children. Throughout their struggles, the women worked to stay focused on spaces that could be emotional refuges for them, even as affordable and stable housing, and comprehensive care, have long been scarce nationally, especially for women living with HIV/AIDS.

Demolition of Rockwell Gardens, c. 2006 (Photograph by Paul Goyette, Flickr)
Incarceration

Over the course of the 20th century, the United States has criminalized almost all aspects of the lives of the women in this project. Some were directly caught in the crossfire of the War on Drugs, especially as it disproportionately policed the use of crack cocaine by Black Americans. Others had family members who were locked up. Women discussed how jails and prisons interrupted their wellbeing as well as the fact that prison was sometimes the first place they received any healthcare.

Rikers Island, 2004 (satanslaundry, Flickr)
Incarceration

Over the course of the 20th century, the United States has criminalized almost all aspects of the lives of the women in this project. Some were directly caught in the crossfire of the War on Drugs, especially as it disproportionately policed the use of crack cocaine by Black Americans. Others had family members who were locked up. Women discussed how jails and prisons interrupted their wellbeing as well as the fact that prison was sometimes the first place they received any healthcare.

Rikers Island, 2004 (satanslaundry, Flickr)
Incarceration

Over the course of the 20th century, the United States has criminalized almost all aspects of the lives of the women in this project. Some were directly caught in the crossfire of the War on Drugs, especially as it disproportionately policed the use of crack cocaine by Black Americans. Others had family members who were locked up. Women discussed how jails and prisons interrupted their wellbeing as well as the fact that prison was sometimes the first place they received any healthcare.

Rikers Island, 2004 (satanslaundry, Flickr)
Surveillance

In all three locations, the public health system, both in terms of its systems of surveillance and its mission to make people and communities healthy, failed to make the women narrators feel cared for when they received their diagnoses. Instead they felt exposed and lacking the sense that their health mattered.

Surveillance

In all three locations, the public health system, both in terms of its systems of surveillance and its mission to make people and communities healthy, failed to make the women narrators feel cared for when they received their diagnoses. Instead they felt exposed and lacking the sense that their health mattered.

Surveillance

In all three locations, the public health system, both in terms of its systems of surveillance and its mission to make people and communities healthy, failed to make the women narrators feel cared for when they received their diagnoses. Instead they felt exposed and lacking the sense that their health mattered.

Women's Interagency HIV Study

Most of the narrators came to this project from their connection to the Women’s Interagency HIV Study (WIHS, pronounced wise). WIHS is funded by the US government and seeks to document the natural history of HIV in women. It began in 1994 and has branches across the country, including in New York City, Chicago, and Raleigh-Durham. WIHS is one of too few health care entities that focuses directly on the needs and experiences of women living with HIV/AIDS. WIHS provides women with camaraderie and connection, a stark contrast to the judgement they often face from people they know and don’t know. In this way, WIHS as an institution, is one the most important ways that the women narrators can keep themselves, their families and their communities healthy.

Women’s Interagency HIV Study newsletter, Summer 1997
Women's Interagency HIV Study

Most of the narrators came to this project from their connection to the Women’s Interagency HIV Study (WIHS, pronounced wise). WIHS is funded by the US government and seeks to document the natural history of HIV in women. It began in 1994 and has branches across the country, including in New York City, Chicago, and Raleigh-Durham. WIHS is one of too few health care entities that focuses directly on the needs and experiences of women living with HIV/AIDS. WIHS provides women with camaraderie and connection, a stark contrast to the judgement they often face from people they know and don’t know. In this way, WIHS as an institution, is one the most important ways that the women narrators can keep themselves, their families and their communities healthy.

Women’s Interagency HIV Study newsletter, Summer 1997
Women's Interagency HIV Study

Most of the narrators came to this project from their connection to the Women’s Interagency HIV Study (WIHS, pronounced wise). WIHS is funded by the US government and seeks to document the natural history of HIV in women. It began in 1994 and has branches across the country, including in New York City, Chicago, and Raleigh-Durham. WIHS is one of too few health care entities that focuses directly on the needs and experiences of women living with HIV/AIDS. WIHS provides women with camaraderie and connection, a stark contrast to the judgement they often face from people they know and don’t know. In this way, WIHS as an institution, is one the most important ways that the women narrators can keep themselves, their families and their communities healthy.

Women’s Interagency HIV Study newsletter, Summer 1997

The state, made up of all the institutions named here and many more that are not, has had an extraordinary impact on all of the women narrators featured in this project. On the one hand, it has produced the conditions that have harmed women, while on the other hand it has seen some institutions, often led by women, provide and help create networks of care.

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