“It’s your story too:” reconsidering feminism, HIV/AIDS, and the digital divide
Let me tell you a story about my dear friend Ruth…
By Margaret Rhee with Kate Monico Klein, Isela González, and Allyse Gray
In the hot San Francisco summer of 2010, Isela González and I met weekly at her Forensic AIDS Project office. Established in 1983, the Forensic AIDS Project (FAP) was the first HIV service provider in a California jail/prison. Located a few blocks away from the San Francisco Civic Center, the walk from the BART station to FAP is a relatively easy one. But I remember it was a sweltering summer. The heat bathed every concrete sidewalk square with deep and abiding sunlight. And my backpack always heavy on my sweaty skin by the time I arrived. Yet, it was heat, but a heat of urgency that propelled us to meet, organize, and hope every week for From the Center’s implementation—even when resources and possibility seemed dire. As feminists of color working in HIV/AIDS participatory education and research, we knew statistics for women of color, incarceration, and HIV/AIDS was rising even as funding for women was getting cut. That summer, we hoped to implement From the Center, a feminist HIV/AIDS digital storytelling initiative for incarcerated women. At the time, From the Center was only proposal, our feminist dream.
In 2006, FAP began implementing feminist participatory programming to address and center the needs of incarcerated women and HIV/AIDS. Realizing traditional and hierarchical teacher-student education was limiting, FAP focused on feminist collaborations with academics, FAP staff, and incarcerated women. “Jailed Women and HIV Education: A Collaborative Investigation” (JWHE) and From the Center are among FAP’s collaborative and feminist projects. Co-led by principal investigators Isela González (MPA) and Jessica Fields (Ph.D.), JWHE re-imagines education, research, and advocacy through participatory action methods. I worked as project manager for JWHE from 2006 – 2008. JWHE provided our political foundation for From the Center’s conceptualization in 2009. However, in From the Center, we emphasize how technology, creativity, and storytelling may facilitate empowerment and alternative pedagogical methods on HIV/AIDS prevention. In particular, we focus on constructionist learning—learning through creating. Our project aims to provide digital media access and education for women inside and outside the jail setting as authors, directors, and storytellers of their own lives. We believe incarcerated and formerly incarcerated women are experts, educators, and storytellers on pressing social issues of HIV/AIDS, the prison industrial complex, and gender equality.
JWHE provided the foundation for From the Center’s feminist praxis in centering collaboration when working in a setting of imprisonment. Prisons and jails are often extremely oppressive institutions shaped and populated by structural forces of racism, capitalism, and gender inequality. Ruth Wilson Gilmore’s Golden Gulag, Angela Davis Is the Prison Obsolete, and Compelled to Crime by Beth Richie provide vital scholarship on gender, race, and the prison industrial complex. Shaped by this body of activist scholarship, JWHE believed women should be active agents and leaders within research and education in the jail setting. Instead of research subjects, incarcerated women of color trained in qualitative sociological research methods to conduct research. Incarcerated women participated in multiple roles such as “researcher, research assistant, participant, interviewer, teacher, student, expert.”[i] Our article on JWHE’s process and “lessons learned” was published in the journal of Sexuality Research and Social Policy. The “JWHE” project focused on providing resources for women to stay out of jail. Upon release from jail, women had the option to work as paid research assistants. One participant of JWHE, Allyse Gray, began working as an outside researcher and helped run formative phases of JWHE. Currently, Allyse co-leads our digital storytelling project From the Center. After completing her degree at community college, Allyse is in the process of transferring to a four-year university and plans to double major in Sociology and Women’s Studies.
From the Center is a continuation of my seven-year partnership Allyse Gray, Kate Monico Klein, Isela González and the Forensic AIDS Project and. As “JWHE” finalized in 2008, Isela and I wondered how digital technologies, creativity, and learning could be incorporated into our feminist advocacy work. In From the Center, we prioritized to stay close to the participatory framework of JWHE. For example, prior to our implementation meetings in the 2010 summer, Isela and I facilitated feedback workshops with women in the San Francisco Jail on the interest of a digital storytelling program. We would not implement a program without consultation from women inside the jail. We learned valuable information from our feedback session. We learned that many incarcerated women were not only excited to learn digital storytelling skills, but had intimate relationships and knowledge on HIV/AIDS. We learned firsthand they all had powerful stories they desired to share and teach the community.
I begin this story with one of those warm San Francisco summer days of 2010 as it illuminates the social and political urgency of our hope to implement From the Center. While we had affirming feedback from incarcerated women, pedagogical models for a digital education project like From the Center largely did not exist. Implementation seemed a lofty dream. However the rising statistics of imprisonment, HIV/AIDS infections, and untimely deaths signaled the necessity to seek feminist strategies and alternative stories of HIV/AIDS. It is our belief that the feminist story of science, technology, and new media also needs to recognize and center issues surrounding HIV/AIDS and incarceration as well. This is a story of many stories—but for now—we offer three.
“…we’ve been very successful at keeping HIV/AIDS incidence low for some populations. If you are a white heterosexual woman, like me, your chances of being infected by HIV and AIDS are very low, 1 in 50,000. But if you’re a black female, who is also an injection drug user, your chances of being infected are more than a thousand time higher than mine, 1 in 35.” (NHAS,WH.gov) —Kathleen Sebelius[i]
On July 13, 2010, Isela and I paused from our weekly meeting to watch the announcement of the Obama administration’s first national comprehensive HIV/AIDS campaign. The formal announcement live streamed online. We watched the formal announcement unfold on my laptop screen. The White House National HIV/AIDS Strategy announcement included testimony from officials including Secretary Kathleen Sebelius. Secretary Sebelius’ powerful epigraph above points out racial and gendered inequalities of HIV/AIDS statistics. Secretary Sebelius’ epigraph offers a particular story.
“Communicable diseases are a part of life; they will continue to emerge and circulate, and people will suffer and die. Yet suffering and death should not be accepted as inevitable in one place and unthinkable in another…The emerging stories can exacerbate or begin to address the inequities. They can make a difference. It is not only possible but time to change the stories and the world they imagine.” – Priscilla Wald, Contagious: Cultures, Carriers, and The Outbreak Narrative[i]
Secretary Seblibus’ statistics demonstrates how HIV/AIDS is “inevitable in one place and unthinkable in another” as literary and science studies scholar Priscilla Wald writes above. In other words, the statistics tell a story of HIV/AIDS as “inevitable” for black women who are “injection drug users” and “unthinkable” for white heterosexual women. However, as Wald argues, “suffering and death should not be accepted” in these stark binaries of life and death; black and white; user and non-user. Stories, Wald argues, can “address” or “exacerbate” inequities especially in the emergence of a communicable disease epidemic such as typhoid in 1907 to HIV in our contemporary day.
In her monograph, Contagious: Cultures, Carriers, and The Outbreak Narrative, Wald argues that communicable disease epidemics are characterized by “outbreak narratives” which are formulaic plots of identifying an emerging infection, follows it through global networks it travels, and ends with its containment through epidemiological work.[i] These narratives have consequences as they “shape attitudes toward disease emergence” and those living with the communicable disease.[ii] Wald points out in her analysis that while the human immunodeficiency virus was a “new” virus, the epidemic inherited conventional narratives of virus and contagion. Wald demonstrates the importance of addressing “outbreak narratives” which shape public, scientific, and medical accounts of HIV as well. Wald’s insightful and rigorous analysis in Contagious demonstrates the power of stories and provided an intellectual and political lens for conceptualization of From the Center. Why do stories matter? What is the story that Secretary Sebelius tells? Who is speaking in these stories of statistics?
Stories have power. As Wald writes, “It is not only possible but time to change the stories and the world they imagine.”[iii]We hoped through implementing From the Center, we would have different stories to imagine otherwise.
“Ruth’s story is one of them. This is Ruth’s story. Which is my story. And your story too.” – Miracle
Wald’s narrative on communicable disease epidemic inspires the need to place in conversation intersectional stories from seemingly juxtaposed sources—Secretary Sebelius’ speech on HIV/AIDS statistics and Miracle, a digital story created by From the Center Storyteller Helen Hall. Secretary Sebelius provides a formative story of statistic and disparity, however Helen Hall’s Miracle offers a different story. We hold these stories as interlocking, intersectional, and interconnected. Although Secretary Sebelius’ story provides vital statistics and accountability of racial privilege, the story behind the mentioned “black female drug user” is not included. How do we begin to care? From the Center digital stories attempts to humanize the statistic and provide an opportunity to learn HIV/AIDS prevention from incarcerated women. Utilizing the accessible form of the digital story From the Center storytellers’ shed light on HIV/AIDS. Through their stories, From the Center storytellers address inequality and teach us by humanizing the statistic.
Moreover, From the Center was an attempt to utilize digital technologies and feminist participatory action methods to create alternative stories on HIV/AIDS and intervene in the digital divide. In The Future of Learning Institutions in a Digital Age David Theo Goldberg and Cathy N. Davidson demonstrate, “In the United States, incarceration correlates with poverty and digital access correlates with educational opportunity and wealth.”[i] While incarceration is often viewed with a correlation with poverty, and digital access correlates with education and wealth, Davidson and Goldberg point out how the digital divide identifies populations vulnerable to rates of incarceration and other issues of marginality. Davidson and Goldberg illuminate incarceration, poverty, HIV/AIDS, education and digital access are intersectional. No longer can we consider the digital divide “the systematic disparities in access to computers and the Internet” without negotiating technologies of the prison industrial complex or HIV/AIDS.[ii] In our digital age, it is vital to reconsider how digital technologies can be utilized to address issues of imprisonment and HIV/AIDS. We can no longer see issues separately in an increasingly complicated world of untimely deaths and suffering. We can no longer see learning as hierarchical. We need to reimagine learning as creative and agentic particularly in our digital age.
With From the Center’s implantation in the winter of 2010, we hoped to address and demonstrate intersectional social issues through alternative stories on HIV/AIDS. We end with Helen Hall’s poignant and powerful digital story Miracle. Hall’s digital story demonstrates the urgency of addressing the prison-industrial complex, rising rates of HIV/AIDS for Black women, and the racial inequalities of the foster care system. Moreover, Miracle raises the importance of stories: “Let me tell you a story about my dear friend Ruth…” she begins.
In the From the Center workshop, Helen took on her role as an educator, storyteller, and advocate along with other participants. Helen actively engaged in the creative process by writing her own script, remixing and collaging traditional HIV/AIDS pamphlets, directing the image sequence in the editing process, supporting her fellow storytellers, and singing her own extraordinary song. From the Center storytellers participated in a sequence of three workshops: traditional HIV/AIDS prevention education by FAP staff, creative writing with Black feminist performance artist Vanessa Lewis/Jezebel Delilah X, and digital storytelling with Andrea Spagat of the Center of Digital Storytelling. However as evidenced by Miracle, Helen Hall and all From the Center storytellers’ creative processes took on unique and individual expressions. They all desired to create stories to share, educate, and reduce stigma on HIV/AIDS: “Because I want to help women know that it is okay to go through things like that, this life,” she writes on her inspiration for Miracle.
Helen Hall’s Miracle provides a powerful story of Ruth, a young woman in San Francisco who experiences hardship when growing up. At 11, Ruth was taking care of her younger siblings because her mother was using drugs and “always” in jail. The narrator of Miracle acknowledges the difficulty Ruth had in comparison to her own childhood: “I know when I was eleven years old, I was not taking care of kids, I was busy living my own childhood.”[i] The digital story continues to recount how Ruth became a mother with two children at 16 and began using drugs through a man named “Timothy.” At 18, Ruth became pregnant, her “HIV test was positive, and Timothy was no where to be found.” Yet, Miracle takes on another turn. As the narrator recounts, Ruth gave birth to a HIV- baby girl and names her Miracle. In the story, Ruth becomes an HIV educator to support other women and their health. Through collages and remixes of HIV/AIDS public health pamphlets, magazine images, and creative drawings, Miracle embodies an intersectional story. Issues such as drug use, HIV/AIDS, poverty, and the jail system are not disconnected but are intersectional as they shape the life experiences and struggles of Ruth’s story. Moreover, digital storyteller Helen Hall shares how the statistic, “a black female, who is also an injection drug user” in Secretary Sebelius’ HIV/AIDS story, has a name.
Poignantly, Helen began Miracle with “Let me tell you a story about my dear friend Ruth…” The conclusion ends with acknowledging the disparity of HIV/AIDS statistics in San Francisco and an urgency to empathize with the statistic as “Ruth’s story is one of them.” Moreover, Miracle urges not only empathy but claims Ruth’s story as one’s own: “This is Ruth’s Story. Which is my story. And your story too.” By claiming Ruth’s story, the narrator takes on accountability of the “inevitability” of HIV/AIDS in women’s lives and in doing so, challenges this “inevitability.” As viewers of the digital story, we are urged to take on accountability of the disparity in HIV/AIDS statistics. Ruth’s story isn’t only Ruth’s or the narrator’s, but it’s “your story too.” As Priscilla Wald argued and it bears repeating: “It is not only possible but time to change the stories and the world they imagine.” Miracle prompts many important questions and actions for feminists working in new media and science and technology studies. Firstly, Miracle urges Ruth’s story “is your story too.”
Thank you: Allyse Gray, Kate Monico Klein, Isela González, Evelyn Nakano Glenn, Kimberly Sawchuk, Carole Stabile, Victoria Robinson, Breeyana Singletary, Catherine White, Michele Pinkerton, and Helen Hall for their support on this short article and From the Center as a whole.
[i] Kathleen Sebelius, “The National HIV/AIDS Strategy” (Presentation, The National HIV/AIDS Strategy, Washington D.C., July 13, 2010).
[i] Jessica Fields, Isela González, Kathleen Hentz, Margaret Rhee, Catherin White, “Learning From and With Incarcerated Women: Emerging Lessons from a Participatory Action Study of Sexuality Education.” Sexuality Research and Social Policy 5 (Berkeley: University of California Press, 2008): 77
[i] Kathleen Sebelius, “The National HIV/AIDS Strategy” (Presentation, The National HIV/AIDS Strategy, Washington D.C., July 13, 2010).
[i] Priscilla Wald, Contagious: Cultures, Carriers, and The Outbreak Narrative (Durham: Duke University Press, 2010): 270.
[ii] Wald, 2
[iii] Wald, 3
[i] Wald, 270
[ii] Davidson, Cathy and David Theo Goldberg, The Future of Learning Institutions in a Digital Age (Cambridge: The MIT Press, 2009): 55
[i] Mossberger, Karen, Caroline J. Tolbert, and Ramona S. McNeal. Digital Citizenship: The Internet, Society, and Participation, Cambridge: The MIT Press, 2008.: 8.