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Black HerStory Month: Celebrating 20 HIV Movement Mothers

Updated: Feb 22, 2022

Black women have always been the backbone of the HIV movement, fighting battles on multiple fronts despite being underpaid, systemically undervalued, and invisibilized. It is long past time for Black women to be given their flowers for all they’ve done.

This year, as part of our Celebrate and Honor Black Women in the HIV Movement campaign, we’re honoring 20 Movement Mothers whose shoulders we stand on, who paved the way for us to do what we do today. These 20 Black Movement Mothers struggled, kicked through doors, and showed us the way. All the while they created spaces of radical love, refuge, and healing to uplift other Black women – especially women living with HIV.

We ask our accomplices, partners, and supporters to show their love, respect, and honor for Black women by committing to take meaningful action for the Black women in their organizations and in our movement.

Dee Dee Chamblee

Dee Dee Chamblee is the founder and executive director of La Gender Inc., a non-profit organization led by African-American transgender women to empower transgender women of color in the metro Atlanta area. Dee Dee is a long-time survivor of HIV and has a long list of accomplishments that include being the first Black trans woman to be honored by President Barack Obama, being selected as a “Champion of Change” during the commemoration of the 30th anniversary of the HIV and the first transgender woman to be inducted into SisterLove’s 2020 Leading Women's Society “I was tired of being disrespected. I was tired of people spitting on the sidewalk when they saw me. I was tired of people not acknowledging that I was a human being.” – DeeDee Ngozi Chamblee.

Dázon Dixon Diallo

Dázon Dixon Diallo is a visionary leader and pioneer, who founded and serves as President of Sisterlove, Inc, an HIV/Reproductive Justice organization that has been leading the way in innovating programs, services, research interventions, and policy responses that center Black women’s HIV prevention and care needs. Dazon’s accomplishments are too numerous to name – among them, she helped found the 30 for 30 Campaign, contributes to In Our Own Voice: The National Black Women’s Reproductive Justice Agenda, and helped establish a transitional housing program for women and children impacted by HIV in the South. Dázon’s work spans the diaspora, and she does it all with the hugest heart, fierce love, and a radiant presence. We cannot thank Dázon enough for everything she has done to uplift Black women’s priorities in the HIV epidemic.

Deloris Dockery

Deloris Dockrey (1959 – 2020) was a true champion and leader for women living with HIV, mentoring countless advocates and working tirelessly for gender justice and human rights. Her radiant smile, ferocious spirit, and warm energy instantly inspired us and put newer advocates at ease. Deloris was an expert in HIV policy, especially in the nuances of the Ryan White Program, and was fiercely dedicated to meaningful involvement of people living with HIV (PLHIV), helping to break down complex policy and budget proposals, legislative language implications and more, to ensure PLHIV were well prepared to be part of any solutions. Deloris participated in and helped lead numerous national and global advocacy spaces, helping to nurture the U.S. People Living with HIV Caucus in its inception, chairing the Global Network of People Living with HIV/AIDS, serving in leadership roles within PWN-USA, and representing North America on the International Steering Committee of the International Community of Women Living with HIV/AIDS. We miss you deeply, Deloris, and will strive to continue your legacy.

Frances Ashe Goins

Frances Ashe Goins is a champion who needs no introduction to those who have been working on women and HIV issues around DC for the last couple of decades. She is a nurse, a professor, and public health expert who has been focused on elevating the federal government’s focus on HIV, especially as it impacts women. During her tenure as Acting Director for the US Department of Health and Human Services Office on Women’s Health, Frances addressed issues at the intersections of HIV and violence against women. In 2005, she developed and launched the first-ever National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) to bring attention to the need for women-specific approaches to HIV prevention, awareness, and care. Since that time, NWGHAAD has been used to demand a focus on policies, programs, and structural solutions for women in the HIV epidemic.

Katrina Haslip

Katrina Haslip was diagnosed with AIDS while incarcerated at Bedford Hills Correctional Facility in the late 1980s. Appalled by the discrimination and mistreatment of her fellow inmates living with HIV/AIDS, she and several other inmates founded AIDS Counseling and Education to support women inside and outside of the prison system. Once released, Katrina worked for a number of AIDS organizations and fought against stigma and discrimination by mobilizing to end women’s invisibility because their symptoms were not included in the CDC definition of HIV. She was a defendant in the ground-breaking lawsuit against the Federal Government challenging women’s exclusion. She continued her activism until she died in 1992, just weeks before the CDC definition changed to include women with HIV which provided women access to lifesaving treatment and support. “I am, and have been, a woman with AIDS, despite the CDC not wishing to count me,” – Katrina Haslip.

Deon Haywood

Deon Haywood is a human rights defender and advocate for Black women, working-class and low-income women, and LGBTQ communities in the Deep South. Deon is the co-founder and executive director of Women with a Vision (WWAV), founded to improve the lives of marginalized women and communities by addressing the social conditions that impede their health and well-being. Following the aftermath of Hurricane Katrina, Deon led WWAV in successfully changing the “crime against nature” statute used to criminalize street-based sex work, thereby securing the removal of more than 800 people from the Louisiana sex offender registry. Through her relentless advocacy, she has grown WWAV into a leading voice on Black women and criminalization in the South, advancing community-led policy solutions. Deon is a proud native of New Orlean and has received countless awards in recognition of her leadership at the intersection of HIV/AIDS, harm reduction, LGBTQ rights, reproductive justice, anti-criminalization, and ending mass incarceration.

Janetta Johnson

Janetta Louise Johnson is a transgender and human rights activist and prison abolitionist. She is the founder and executive director of Transgender Gender-Variant & Intersex Justice Project, an organization that provides political education and leadership development to transgender, gender variant and intersex leaders inside and outside of prisons, jails and other locked facilities. Janetta also founded Transgender Advocates for Justice and Accountability (TAJA) coalition to stop the genocide of trans-women of color in San Francisco. Janetta works to reduce the recidivism rate of the transgender community by providing leadership development and job opportunities to those being released from custody and through legislative campaigns like the Name and Dignity Act, which enables people held in California prisons to change their legal name and gender, while also fighting for the abolition of prisons at large.

Vanessa Johnson

Vanessa Johnson has been a behind-the-scenes mentor and champion to many women living with HIV and her legacy has already impacted thousands of women living with HIV. A co-founder of PWN-USA, she is a lawyer by training and has been busy founding and leading organizations to save lives, humanity, and dignity of Black people impacted by HIV since the 1990s. Just a few of the organizations that she created or co-created, in addition to PWN, include the U.S. People Living with HIV Caucus, Capital District African American Coalition on AIDS (CDAACA), Catch a Rising Star, Saving our Sisters, National Women and AIDS Collective, the 30 for 30 Campaign, the Ribbon Consulting Group, the innovative, CDC-recognized Common Threads microenterprise program for women living with and affected by HIV, and Butterfly-Rising, an evaluated trauma-informed intervention for women with HIV. Vanessa has also steered other essential spaces fighting for the rights of people living with HIV as the National Association of People Living with AIDS (NAPWA) and trained hundreds of women living with and affected by HIV to help us thrive with dignity. Vanessa helped author PWN’s seminal sexual and reproductive justice report for women with HIV, published in 2013: Unspoken: Sexual, Romance and Reproductive Freedom for Women Living with HIV. She has guided PWN-USA since our inception with a firm hand, warm heart, and clear vision for justice, liberation, and healing for Black women.

Marsha Jones

Marsha Jones is co-founder and executive director of The Afiya Center, the only reproductive justice organization in North Texas founded and directed by Black women. Marsha is a national grassroots organizer, community mobilizer, professional speaker, and health educator with a commitment to transforming women and girls’ live to advocate and teach others what reproductive justice looks like in real life. Marsha co-founded The Afiya Center to challenge harmful systemic and political constructs to advance the economic, health, and safety of women and girls. Marsha is known throughout Texas and the US as a die-hard advocate for reproductive justice and rights when it was not fashionable or popular to stand up for abortion in the deep south and in 2018 endured harmful backlash over a billboard that said “Black women take care of their families by taking care of themselves. Abortion is self-care.” According to Marsha, every issue facing Black women is a reproductive issue! Marsha is a frequent visitor to Austin meeting with legislators and others to make sure lawmakers understand the needs of Black women. The Afiya Center is known for its cutting edge programs like birth justice like “End with Red” an economic enrichment campaign aimed at developing micro-enterprising projects focused on creating wealth for women of color living with HIV/AIDS for over 10 years. Marsha Jones is a true movement mother and we celebrate and honor you today and everyday.

Loren Jones

Loren Jones (1952 – 2021) was a true revolutionary who inspired us and was unapologetic about demanding accountability to Black people, low-income people, and women. She consistently foregrounded issues of race, class, and gender throughout her decades of analysis and advocacy. A founding member of PWN-USA and a Black woman living openly with HIV, Loren also served in leadership roles on multiple Bay Area organizations focused on sex worker rights, dignity, and services for incarcerated and system-involved people, and for unhoused communities. She passionately fought to elevate a focus on Black people in the HIV epidemic and to increase accountability to women in clinical trials research. Loren is responsible for much of PWN’s economic justice framing and analysis – she consistently pushed us to be better and do better. She had a great sense of humor and her wickedly raucous laugh could be heard across a crowded plenary room. We miss you Loren.

Barbara Joseph

Barbara Joseph (1944 – 2021), legendary activist and long-time survivor of HIV, embodies the true spirit of a “Movement Mother.” Barbara contracted HIV in 1984 and was diagnosed with HIV in 1990 during a time when there were not many Black women going public with their HIV status and there were few resources and services for Black people living with HIV. Barbara went public with her story with hopes that “If you can save one life [by sharing your status], then you’ve done what God wants you to do.” Barbara’s activism spanned three decades. She was the co-founder and chair of the National Black Women’s HIV/AIDS Network and founded Positive Effort to provide HIV education about risk reduction for those most vulnerable to HIV in her hometown of Houston, Texas. Barbara always spoke her mind and was known for her fiery wit and unwavering commitment to ensure that the needs of Black women living with HIV were met.

Congresswoman Barbara Lee

Oakland’s own Congresswoman Barbara Lee is one of our fiercest champions in Congress. A fierce and unapologetic progressive, Representative Lee has authored or co-authored every major piece of legislation on HIV/AIDS since beginning her tenure in the House of Representatives, including authoring the Global AIDS and Tuberculosis Relief Act of 2000, drafting the President’s Emergency Plan for AIDS Relief (PEPFAR), leading the lift of the discriminatory HIV travel ban to the United States, and more recently, authoring multiple versions of the REPEAL HIV/AIDS Discrimination Act. She founded and co-chairs the Congressional HIV/AIDS Caucus and led the United Nations Global Commission on HIV and the Law in producing a report spotlighting human rights atrocities in the global HIV epidemic, including HIV criminalization. A stalwart advocate for racial justice, healthcare access, and women’s rights, Representative Lee supports Medicare for All, abortion rights, and more. Barbara Lee speaks for us and we could not be more grateful for her leadership!

Prudence Mabele

Prudence Mabele (1971 – 2017) was the founder of the South Africa Positive Women’s Network in 1996, a key leader in the Treatment Action Campaign, and was the inspiration to create PWN-USA. She was bold, brave, and courageous – one of the first Black South African women to come out publicly about her HIV status, in 1992, and about being a lesbian. Prudence was a fighter for justice and liberation; relentless in pushing the needle on gender-based violence, gender equity, rights of women and girls, and for women living with HIV, when few would talk about these issues openly and during a period of AIDS denialism by the South African government. She consequently faced stigma, harassment, discrimination, and violence. Prudence had a clear understanding of power, working in grassroots spaces and also collaborating with UNAIDS, serving in leadership roles on the Society for Women and AIDS in Africa, helping to convene Women Now! carrying the Olympic flame in 2004, and her activism helped literally millions successfully access HIV care and treatment. We remember Prudence also for her warm embraces, her generous mentorship, late nights of passionate conversation over food and drinks, her iridescent smile, and irresistible laugh.

LaTrischa Miles

LaTrischa Miles has been a steady and critical part of PWN’s journey since the beginning. As a steering committee member, one of the original founders, and now as the Board co-chair, LaTrischa has been instrumental in PWN’s growth and success. LaTrischa is an advocate, national speaker, and trainer with years of expertise in developing nationally renowned peer-based programming and strategies for retention in care and stigma reduction for people living with HIV. Over the last few years, LaTrischa has championed HIV decriminalization efforts including providing testimony to Missouri’s state legislature, and was part of the coalition responsible for modernizing Missouri’s criminalization law in 2021. Latrischa is the manager of the peer treatment adherence program with Kansas City Free Health Clinic and has received numerous awards for her work including the Elaine Aber Humanitarian Award, which was created by the Empower Missouri State Board in honor of Elaine Aber’s long-time work in social justice in 2019.

Patricia Nalls

Patricia Nalls is a global activist, founder and executive director of The Women’s Collective (TWC), an organization dedicated to meeting the needs of women and girls. Pat was diagnosed with AIDS in 1986 following the death of her husband and daughter to the virus. At a time when most of the HIV services were designed for white gay men and there was not many women openly living with HIV, Pat was forced to find ways to connect with other women living with HIV/AIDS for support. What started as a secret phone line evolved into a support group called The Coffee House, and in 1995, became what we know today as TWC. Pat has been recognized for her heroism, strength, and determination and works globally and nationally with others to replicate the TWC’s peer-based, woman-focused, model of care and to ensure that providers and others are fully informed about the comprehensive health and social services needs of women and girls at risk for HIV/AIDS and other health disparities.

Sharmus Outlaw

Sharmus Outlaw (1966 – 2016) was an out-sex worker, a Black transgender woman, and a brilliant and indomitable policy advocate, working at the intersection of sex worker rights, trans liberation, and rights for people living with HIV. She was a co-founder of Different Avenues, a grassroots organization focused on protecting the health, safety, rights, and dignity of people working in alternative economies, and played a leadership role in multiple other organizations including the Desiree Alliance, the Best Practices Policy Project, the Red Umbrella Fund, and others. Sharmus helped lead and author pivotal community-based research and policy recommendations including Move Along: Policing Sex Work in Washington, D.C. and Nothing About Us, Without Us: HIV/AIDS-Related Community and Policy Organizing by U.S. Sex Workers, which addressed, among other issues, serious gaps for sex workers and transgender rights in the 2010 and 2015 National HIV/AIDS Strategies. Her leadership was seminal in demanding US and global north accountability to sex worker rights, including the International AIDS Society’s ongoing failure to address sex worker exclusion from global HIV spaces.

Linda Scruggs

Linda Scruggs is the founding director of Ribbon Consulting Group, one of the few consulting firms led by Black women living with HIV in the country, where she provides organizational consulting services to community-based organizations, health departments, and hospitals to increase their ability to support and promote healthy communities. Linda is a national speaker, leader, trainer, and visionary who has been empowering and developing the leadership of women living with HIV and others for over 20 years. She is a founding member of the Positive Women’s Network-USA and the National Black Woman HIV Network, one of the first organizations dedicated solely to advocating for Black women. Linda has served on numerous committees and boards, both nationally and internationally, and received numerous awards and honors for her work to ensure that communities and individuals have the tools they need to live a healthy and positive life. Linda’s work has led her to present before former President Bill Clinton and President Barack Obama described Linda as an outstanding member of the HIV/AIDS community during a speech to commemorate the release of the National HIV/AIDS strategy in 2010.

Waheedah Shabazz-El

Waheedah Shabazz-El is known as “The Legend” for a simple reason: she is legendary. One of PWN’s 28 founding members, Waheedah has also helped guide the vision for the HIV Prevention Justice Alliance, the formation of the Black United Leadership Institute, the U.S. People Living with HIV Caucus, and currently serves as Director of Community Engagement at The Reunion Project, where she leads an HIV Long-Term Survivor Alliance. However, this description barely scratches the surface of Waheedah’s incredible achievements. Waheedah founded PWN-USA’s first chapter, PWN-Philly, in 2009, and went on to become our first Regional Organizing Coordinator and then our Organizing Director. Under her leadership and guidance, PWN chapters around the U.S. were birthed and hundreds of women living with HIV were mentored and personally coached by Waheedah to increase their effectiveness as leaders and to work in alignment with an intersectional, values-based human rights framework to uplift dignity for all communities impacted by the HIV epidemic. PWN would not be here in its current form without Waheedah’s fierce, brilliant, visionary leadership. She continues to inspire us and we are grateful to be in community and movement with Waheedah.

Maxine Waters

Congresswoman Maxine Waters is considered one of the most powerful women in politics today and is a fearless and outspoken advocate for women, children, people of color, and the poor. Throughout her more than 40 years of public service, Maxine Waters has been on the cutting edge, tackling difficult and often controversial issues. She has combined her strong legislative and public policy acumen and high visibility in Democratic Party activities with an unusual ability to do grassroots organizing. Prior to her election to the House of Representatives in 1991, Maxine was already known for her no-nonsense, no-holds-barred style of politics. During her 14 years in the California State Assembly, she rose to the powerful position of Democratic Caucus Chair. In 2017, during a House financial services committee hearing, Maxine’s famous line “reclaiming my time,” quickly went viral as symbolic of the fatigue that so many feel about mansplaining, white fragility, and attempts at silencing us. Maxine has been a strong ally and champion to the HIV community since the 1980s. As a Member of the Congress and past chair of the Congressional Black Caucus, she co-led efforts to establish the Minority AIDS Initiative which has significantly expanded HIV/AIDS prevention, screening, and treatment efforts among racial and ethnic minorities. In 2018, she was named by Time magazine as one of the 100 most influential people.

Juanita Williams

Juanita Williams (1956 – 2021) was a founding member of PWN-USA and a trainer, facilitator, and master crafter who led us to an expansive understanding of human rights, reproductive justice, and intersectionality. Juanita helped to co-found the reproductive justice movement and was heavily involved in SisterSong Women of Color Reproductive Justice Collective, Sisterlove, Inc, and global HIV and women’s rights movement spaces, including those focused on women in the African diaspora. She brought art, beauty, storytelling, and healing to movement spaces, leading the visioning, creation, and stitching of PWN’s quilt, and finding new ways to give women with HIV voice and agency through her creation of crafting spaces and leadership as a trainer in the Common Threads microenterprise program founded by Vanessa Johnson. Juanita served as an advisor on PWN’s seminal sexual health and reproductive justice report for women with HIV Unspoken: Sexual, Romance and Reproductive Freedom for Women Living with HIV. With Juanita’s influence, PWN has an expansive lens on reproductive justice and economic justice as core values that guide our work. Her legacy lives on in our spaces and many other movement spaces.


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