Today, we’re talking with the founder of SisterLove and member of the LOLA Collective, Dázon Dixon Diallo. SisterLove is a community-based organization dedicated to women’s reproductive justice, with a keen focus on HIV, STIs, and overall sexual wellbeing. Dr. Dixon Diallo is a co-chair for the ActNow End AIDS National Coalition, served as a 3-term member of the NIH Office on AIDS Research Advisory Council, and served as a 2-term member of the National Women’s Health Network board. To mark Sexual Health Awareness Month this September, we’re donating a box of condoms to SisterLove for every $25 spent on mylola.com.
What led you to found SisterLove?
I was a young health worker at a local women’s reproductive health center when the AIDS epidemic landed on our doorstep. Women from all over the city started calling in to the local AIDS organization, which had no services, no education, and no clue what to tell these worried women — some of whom didn’t know they were already sick with AIDS.
After some time, the AIDS organization lost interest in supporting women’s prevention work and my organization allowed us to bring it over to continue providing education and support services. When the 1988 Democratic National Convention came to Atlanta, brigades of anti-choice demonstrations and clinic sieges followed and lasted long after the DNC left town. It didn’t take much longer for the clinic to decide that our work was unaffordable, since public funding for AIDS would be prohibited at an abortion clinic. In reality, we knew that the stigma associated with AIDS and other socioeconomic challenges that Black women faced — drug use, violence, homelessness, poverty, and lack of health insurance — was a bigger reason why the Women’s AIDS Prevention Project was not a priority. In the end, the program was sundowned.
I was angry that no one cared about the women who looked like me, and wanted to help my sisters who were suffering from a disease that affected them differently from men.The Women of Color Advisory Group that I had created with the Women’s AIDS Prevention Project supported me leaving the organization and encouraged me to start something new. I left in June of 1989 and started SisterLove the next month.
We’ve talked about sexual and reproductive justice on our blog before, but would love to hear your definition of these terms and the movement.
Through our reproductive justice work in SisterLove and SisterSong, we have developed a definition that strives to be more inclusive: “Sexual and Reproductive Justice exists when all people have the social, political and economic power and resources to make health decisions about our bodies, gender, sexuality and families for ourselves and our communities.”
The core element of the movement for sexual and reproductive justice (SRJ) is intersectionality. SRJ recognizes that the ability of any identifying woman to determine what happens to her body is directly related to what is happening in her community. Human rights protections or violations will determine an individual’s ability to exercise self-determination and we must work across multiple social justice movements to build a new movement to save our own lives and those in our families and communities.
How does SisterLove’s work aid the sexual and reproductive justice movement?
At SisterLove, we are deeply intentional about multi-directional intersectionality in the SRJ movement. We focus on intergenerational, interracial, multi-national, and diverse sexual and gender identities. We believe that the lived experience is a critical component of our understanding and expertise to create, develop, and implement programs and solutions. We see every person for all of the experiences they bring to the table. We respect and celebrate differences, while finding shared values to work on. We use a number of approaches to meet people’s needs and empower them such as service delivery, advocacy and mobilization, collaborative research, leadership among those living with or surviving oppression and building bridges across borders and barriers. We organize. We write. We train. We speak out. We show gratitude. We are intensely inclusive. We take healing, hugging, and laughing very seriously. We show up. And we sometimes turn up!
We provide services the community says they need. We hold conferences and gatherings to explore and interrogate the intersections. We write op-eds, research papers, book chapters, reports and amicus briefs, to name a few. We honor our leaders from the community. We provide multimedia spaces for dialogue and education. We take unapologetic positions that amplify the strength and the power of Black women and girls. We show love at all times.
SisterLove was the first women’s HIV/AIDS and reproductive justice organization to exist in the southeastern United States. What did reproductive health care and sexual and reproductive justice look like for marginalized groups of women living in the southeast in 1989?
There’s been some moderate progress since we began in 1989. We continue to fight for inclusion and prioritizing Black and Brown women in healthcare, health professions, leadership roles, and positions in the sexual and reproductive health and rights (SRHR) movement. Thirty-one years ago, AIDS-related illnesses in women were not included in the federal government’s response (education/prevention, treatment and care, research and treatment discovery, etc) and there was no acknowledgement that the South was uniquely neglectful and hostile to AIDS patients and the organizations that supported them.
HIV exposed the health disparities and racial/sexual injustices in public health responses. HIV-related stigma and discrimination were rampant and key culprits to preventing people from testing and treatment. Marginalized women, especially those who were homeless, battling substance abuse and mental health, domestic and sexual violence survivors, LGBTQ, Black and Brown, poor or poorly resourced, were virtually ignored for the first decade of the AIDS epidemic.
Can you tell us about the progress that’s been made since then, thanks to the work of SisterLove and similar organizations?
In 1990, SisterLove worked on a four year campaign to get the CDC’s definition of AIDS and the guidance for care and treatment changed to include women’s AIDS-related health issues (such as cervical cancer and pulmonary tuberculosis), and unique conditions affecting homeless people, drug users, and infants. This was a game changer.
We were intentional about finding partners and collaborators who saw HIV/AIDS as a SRHR issue. We became active members of the National Center for Human Rights Education to give HIV a broader context beyond disease and public health. We later joined forces with 15 women of color groups to form SisterSong and became a leader in adopting the practice of addressing key SRHR issues through the lens of intersectionality.
Since then, women of color have become leaders in the movement to achieve full sexual and reproductive autonomy with dignity. HIV/AIDS is an integral part of the SRHR movement to provide integrated services including treatment, care, education, advocacy and research. We’ve changed the research paradigm to recognize women’s roles in the discovery of drugs and devices to help curb the epidemic. Interventions for prevention and treatment have been expanded. We doubled down on the fight to achieve universal health care, including the Affordable Care Act. We have seen the adoption of SRJ as the preferred language and understanding of SRHR issues in nearly every sector of society, including media, industry, academia, literary, governmental, and social justice organizations.
Are there specific factors that drive poor health status (in particular, sexual and reproductive health) among marginalized groups of women living in America? How is SisterLove tackling these issues?
Primary factors that drive poor health status among marginalized women are racism, sexism, and classism. Many lack access to any resources or live in areas where they’re not represented in critical decision-making spaces. They also are unable to access healthcare due to costs, geography, appropriate service delivery, and sex-related stigmas that blame and shame women.
We tackle these issues by providing trustworthy information, access to resources, education, and counseling. In addition, we’re mobilizing activists and pushing for changes to legislation and institutional behaviors so we can create more safe havens for marginalized women and families.
What have the outcomes of SisterLove’s efforts been so far?
We believe that our work has contributed to a decrease in new HIV infections among women, especially African American women in the US. We’ve changed the way research is conducted by providing people with agency and informed consent and including pregnant women.
We’ve helped secure greater amounts of funding that is invested directly in our communities. There’s also been an increase in the number of women living with HIV taking on more leadership roles in SRH and HIV-related organizations. We continue to mentor and train hundreds of women and men to bring SRJ into their own careers and spaces.
In the future, we hope to complete building an integrated space for our neighborhood that will incorporate a center of excellence that applies SRHRJ to Preventive Health, STEM, communications, and creative arts fields all under one roof.
Health education and prevention (HEAP) is a core piece of SisterLove’s work. Can you tell us about that work specifically?
We provide testing, counseling and access to care for HIV, STIs and pregnancy, as well as gender-based violence. Healthy Love Party is one of the prevention programs we developed that uses an evidence-based, sex-positive, and group-friendly approach to engage the community. For women at risk for HIV, we make sure they’re knowledgeable about their health and have access to treatments like pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP). And it doesn’t stop there. We make sure to engage with these women through support groups, leadership development, and training so they are always supported.
What prompted you to make this work your primary focus when the company was just starting out?
Health education and prevention seemed to be the most reasonable and economical approach to preventing disease. In the late 80s, there was more misinformation and disinformation geared toward women and education was the only antidote. Teaching people how to prevent HIV/AIDS also helped to address most of the stigma and discrimination in sexual and reproductive healthcare and advocacy.
What did you learn from the community while doing this work, and how did it prompt you to expand your mission to meet a broader range of needs in later years?
We learned nearly everything we know from the community. We learned that the best approaches to engaging folks in their own care was storytelling and respecting the stories. It’s important to “meet people where they want to be met”, especially as a way of acknowledging their experiences and figuring out how to address their intersectional needs. The community taught us the greatest value in collaborating and partnering with other institutions to meet the diversity of needs, so we have a special appreciation for the lived experience or “indigenous expertise” of everyone we interact with.
How is your organization making sure people — particularly those in marginalized groups — have the resources they need to make informed decisions about their sexual and reproductive health?
It’s important to our work that the voices of everyone we serve is included at as many levels as possible. When we collaborate with our partner organizations, we often invite members from our support groups to represent us so people can see the impact of SRHRJ firsthand. We fight for policies that expand and increase inclusion in the social safety nets, such as Medicaid/Medicare, Ryan White Programs, the Affordable Care Act, and the Americans with Disabilities Act. For younger people, we organize and host a youth group, the Healthy Love Youth Advocates, who work on comprehensive sexual health education, HIV/STI/Pregnancy prevention, and family planning.
How can we all work toward sexual and reproductive justice right now, regardless of our background or geographic location?
One of the most important things to do is to center the SRHRJ fight on Black and Brown women. Recognize and acknowledge your privileges and use them to lift and sustain the leadership and solutions that Black and Brown women bring to the SRHRJ table. Recognize that Black women set the table. And continue conversations that shine a light on the darkest intersections, whether it’s racial injustice, sex workers’ rights, criminal justice, or police violence. Especially if they’re uncomfortable to talk about.
What are some resources you can recommend for anyone who wants to learn more and get involved?
In Our Own Voice — National Black Women’s Reproductive Justice Agenda is a partnership of 8 Black women’s reproductive justice organizations, including SisterLove: SPARK Reproductive Justice Now, Women With A Vision, the Afiya Center, New Voices for Reproductive Justice, Black Women’s Health Imperative, SisterReach, and Black Women for Wellness. I also recommend looking into SisterSong, URGE, National Latinas for Reproductive Health, National Asian Pacific American Women’s Forum, and National Advocates for Pregnant Women.
For literature, I recommend The Blueprint for Sexual and Reproductive Health, Rights, and Justice, Reproductive Justice: An Introduction by Loretta Ross and Ricki Solinger, Undivided Rights: Women of Color Organize for Reproductive Justice by Jael Silliman, et al to name a few.