I’m Still Surviving is a living women’s history of HIV/AIDS. Here you will find hundreds of excerpts from 39 women’s oral history narratives, each of whom comes from cities and towns in one of three states: New York, Illinois and North Carolina. Their lives share similarities and differences that can be tracked in minute detail, even as the connections among them can go in infinite directions. We invite you to engage and participate in this material, all of which when taken together raises a set of surprising issues and experiences about what health means and how we can live in a world that centers wellness in direct response to systemic violence and racism. We have built a set of historical frames that can be viewed in the SEE section, and listened to in the HEAR section.
The women of this living history of HIV/AIDS are monumental: they wield power even when societal expectations and structures make them vulnerable and try to cause their demise. They will often tell you that HIV/AIDS does not singularly define them at the same time that they will frankly relay how they came to be living with HIV/AIDS. None of these women consider HIV/AIDS a sufficient descriptor of who they are or hope to be. They inhabit their present reality with pride. And they are future thinkers, who regularly speculate about how they want the world to look for themselves and those around them.
In making this project, the women took part in a participatory model for collecting, interpreting, framing, and designing public facing narratives in different media. Significant details emerged from this process and became the basis for design elements. While the women’s words resonate with meaning and tone, so too do colors and graphic forms. For example, a color code for the different locations these women present emerged from their discussions of meaningful objects and events. At a workshop in Chicago, nearly every woman in attendance had a Cook County Hospital “orange card” with her. These cards, distributed by the county hospital system as the way to access any medical treatment, including people living with HIV/AIDS, read “always bring this card with you.” And so the women did. When asked what they had in their possession that represented their time at Cook County, they pulled the orange cards out of their wallets or purses. In Brooklyn, one woman explained that the borough’s bright red emergency call boxes had saved her life, twice, when she was pregnant and went into labor with no access to OB care. And, during a break at a workshop in North Carolina, some of the women exchanged stories about their experiences eating clay as children. Thus, in this exhibition, the color orange has become symbolic for Chicago, red for Brooklyn, and clay for North Carolina.
What you will encounter here are the real heartfelt stories and experiences of a group of extraordinary women who live with HIV/AIDS inside their bodies, many of them for more than three decades. They are long term survivors who have outlived illnesses, violence, and loss, alongside experiencing incredible joy and success. Should it be too difficult for you to engage with these stories or you find yourself unable to withstand their more painful aspects, we encourage you to take care to move away, and come back when you feel ready. We know that for some visitors, these stories might resemble those of people you know, while for others it might bring up your own painful memories. We recognize that some of you may not be able to come back at all. Take comfort in the fact that no matter your decision, the women whose stories are included here have affirmed the need to create a space for themselves and offer their stories up to be encountered by people they do not know and who do not know them.
These women have had a profound impact on all the people working on this project. We hope that you, too, will have a meaningful experience with the histories presented here.
Brooklyn, NY, Chicago, IL, and Raleigh-Durham, NC are the locations featured in this exhibition. We have chosen these places because each in its own right is important to the women’s history of HIV/AIDS in the United States. Each location has an office that runs the Women’s Interagency HIV Study (WIHS, pronounced "wise"). WIHS, sponsored by the National Institutes of Health, is the longest running longitudinal study of the natural history of HIV in women and those assigned female at birth. Brooklyn’s study is based at SUNY-Downstate, and Chicago’s was initially at Cook County Hospital and now has in own offices in Chicago’s medical district. Both were among the original sites of the study and started their work in 1994. North Carolina’s WIHS is based at UNC, and joined the national program in 2013, when the study expanded to four new sites in the southern US to keep track with the changing epidemiology of HIV/AIDS.
The Brooklyn described and pictured here is a complicated and contradictory place. With a long history of racial and economic segregation and waves of gentrifications, Brooklyn is now considered one of America’s hippest places. Most of the women who have shared their stories in the pages that follow have lived in Brooklyn all their lives, in neighborhoods like East New York, Bushwick, Brownsville, which have only recently begun to experience the beginnings of gentrification. A majority of residents in these neighborhoods are and have long been people of color. There is higher concentration of people living poverty there than in other parts of the city. The health implications of this structural inequality mean that certain zip codes hold the greatest concentration of people living with HIV/AIDS in Brooklyn. Meet the women from Brooklyn below.
The Chicago you will see and hear in this exhibition is both a city of neighborhoods and one of the most racially segregated cities in the United States. It has long been a landing place for migrants: a central point in the Great Black Migration from south to north over the course of the 20th century, as well as the migrations of Mexican and Puerto Rican families and white Appalachians. While always a diverse city, Chicagoans have rarely experienced interracial connection. White Chicago residents were not encouraged to cross neighborhood lines, while Black and Latino residents were often kept from doing so by policies of redlining, disinvestment and policing. This bifurcated urban space structured the world that all the women interviewed, across race, grew up in. Meet the women from Chicago below.
The Piedmont and Eastern regions of North Carolina are at the center of this part of the project. The WIHS clinics are located in Raleigh and Durham, an area that is home to the nation’s largest research and development park (Research Triangle Park) and three major research universities – commonly referred to as the Triangle. The women represented here live both in urban centers and in smaller cities and towns within a 100-mile radius of the Triangle. Whether in bigger cities or small towns, most of the locations have long histories of racial segregation, especially in housing and employment. The women from outside the Triangle travel long distances to receive health care and connect with the WIHS. This is a function of less access to health care in rural areas. Over the last decade it has become harder and harder for poor women to receive the care they need. Meet the women from North Carolina below.
History Moves is a public history project that works to transform historical subjects into history makers. We do this by providing a set of tools that enable people to move from telling their individual stories to thinking about historical connections and linkages. History Moves partners with community-based organizations to produce untold narratives about how communities come to look as they do. Through a series of participatory workshops on oral history and interviewing, History Moves encourages people to record stories of their lives in conversation with one another. In the process they imagine, interpret, and map their collective pasts. The interviews are professionally transcribed, giving new form to the participants’ spoken words and concretizing their historical experience on paper. To supplement and enliven the oral histories, and to foster historical thinking and memory, History Moves asks all participants to share historical ephemera, especially images, with the assembled group. We then supplement the personal images with images from historical research done after listening to and reading the interviews. We combine all we have collected — the sound, text and images — to produce a multimedia archive and public presentation of the collective history. For this online exhibition we have decided not to share women's personal images so as to maintain some of their privacy.
The History Moves team began when a historian and a graphic designer came together to think about how to the put the public at the center of public history. Starting from the idea that HISTORY + DESIGN produces more engaged and informed knowledge about the past, we have created incredible teams of scholars, students, community members, and digital creators technologists to collect, curate and display our living women's history of HIV/AIDS.