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Cynthia Carey-Grant: “The key to resilience is demonstrated through another word — buoyancy — as a definition of lightness of being”

To me, the key to resilience is demonstrated through another word — buoyancy — as a definition of lightness of being. And that is the best way to describe the incomparable Nilda Rodriguez, quintessential WORLD leader and HIV activist extraordinaire. Nilda never gives up. She keeps on trucking, always with a smile and twinkle in her eye. Time and […]

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To me, the key to resilience is demonstrated through another word — buoyancy — as a definition of lightness of being. And that is the best way to describe the incomparable Nilda Rodriguez, quintessential WORLD leader and HIV activist extraordinaire. Nilda never gives up. She keeps on trucking, always with a smile and twinkle in her eye. Time and time again I have witnessed Nilda rise up from deep turbulent waters that would sink anyone else. Nilda has risen above addiction, stigma, discrimination and life trauma that would sink someone of lesser spirit. Nilda is not one to stay in the pits of despair — not even HIV could keep her down. When a catastrophic car accident put Nilda in the hospital for several months, many thought she would have to slow down. However, her desire to get back to the WORLD, along with her strong dedication to supporting the HIV community, compelled her to get in her wheelchair and continue to show up. Resilience means showing up. Black women are the most resilient creatures on the planet. The rest of the world can learn a lot from women living with HIV about resilience.


I had the pleasure of interviewing Monica Gandhi MD, MPH and Cynthia-Carey Grant. Monica and Cynthia are local co-chairs of the 23rd International AIDS Conference (AIDS 2020), which is the largest conference on HIV and AIDS. Monica is a UCSF professor of medicine in the Division of HIV, Infectious Disease, and Global Medicine and Medical Director of Ward 86, which played a historic role in the treatment and prevention of HIV/AIDS. Cynthia is the former executive director of Women Organized to Respond to Life-threatening Diseases (WORLD), an Oakland-based agency serving women with HIV/AIDS.


Thank you for joining us Cynthia! Can you share with us the most interesting story from your career? Can you tell us what lessons or ‘takeaways’ you learned from that?

I started my tenure as Executive Director (ED) of WORLD at a time when there was a significant decrease in HIV funding across the board, resulting in a serious negative impact on the nonprofit sector and communities of color. The need for safety-net services had greatly increased, but restrictions on Ryan White grants decreased the funding for direct services. Many of the foundations that supported WORLD changed their focus areas or had major leadership transitions, which resulted in different priorities. Within three months of starting my role at WORLD, I had to lay off several staff members. I was devastated, but I was also determined not to have the organization close under my watch. Those first three years were traumatic, coupled with the controversial spin-off of Positive Women’s Network, a major WORLD project, causing more financial deficit.

During a retreat in December 2012, WORLD leadership concluded that if we were to survive, we needed to scale up gender-focused HIV services. This strategic planning addressed capacity, organization, mission, and funding. After much deliberation, the WORLD Board made a historic and visionary decision to affiliate with the AIDS Healthcare Foundation (AHF) to ensure the future sustainability of the WORLD’s mission, services, and legacy. And while the decision was right for the long-term sustainability of WORLD, the impact of such major change was felt across the organization. Steering WORLD through this transition was the hardest thing I have ever done, but it has also been the most rewarding. I am very proud of the WORLD family for making this bold decision. Our community has lost many service providers due to the above-mentioned funding decreases. WORLD has not only survived but has been able to grow and expand services. Shortly after the affiliation, WORLD moved offices into a house and opened a women’s clinic. The actualization of this long-cherished dream inspired the entire organization and set me on the path to the legacy role as the first African American woman International AIDS Conference (IAC) Co-Chair that I hold today.

None of us are able to achieve success without some help along the way. Is there a particular person you are grateful toward who helped get you to where you are? Can you share a story?

All my accomplishments, every achievement I have obtained in my professional career, have been made possible because of the support, guidance and inspiration of women who were able to “see” me and believed in my potential, even when I didn’t. I received my first Executive Director (ED) job at California Abortion and Reproductive Rights Action League 25 years ago, because the outgoing ED, Jamienne Studley, mentored me and encouraged me to apply. Dr. Rhoda Nussbaum took a risk and promoted me as Manager of Women’s Health at Kaiser Permanente, even though I did not have all the credentials. My sister and friend, Gloria Lockett, took me under her wing as the first woman of color ED of WORLD and introduced me to the key players in the Bay Area HIV community, including my spiritual guide Jacqueline Coleman. All of my professional development, growth, and opportunities have been the result of deep and abiding partnerships with women of shared values and an uncommon vision. Together, we did extraordinary social change work and remain the best of friends to this day. These are examples of only a few of a family of women who has lifted me up while keeping me firmly grounded in the collective power and sisterhood. I have been highly favored in my work to share leadership with dedicated women activists and board members who showered me with love, respect, and inspiration that renewed my spirit when I needed a boost.

When you think of resilience within the context of HIV and AIDS advocacy, which person(s) comes to mind? Can you explain why you chose that person(s)?

To me, the key to resilience is demonstrated through another word — buoyancy — as a definition of lightness of being. And that is the best way to describe the incomparable Nilda Rodriguez, quintessential WORLD leader and HIV activist extraordinaire. Nilda never gives up. She keeps on trucking, always with a smile and twinkle in her eye. Time and time again I have witnessed Nilda rise up from deep turbulent waters that would sink anyone else. Nilda has risen above addiction, stigma, discrimination and life trauma that would sink someone of lesser spirit. Nilda is not one to stay in the pits of despair — not even HIV could keep her down. When a catastrophic car accident put Nilda in the hospital for several months, many thought she would have to slow down. However, her desire to get back to the WORLD, along with her strong dedication to supporting the HIV community, compelled her to get in her wheelchair and continue to show up. Resilience means showing up. Black women are the most resilient creatures on the planet. The rest of the world can learn a lot from women living with HIV about resilience.

Has there ever been a time working within the HIV and AIDS community that someone told you something was impossible but you did it anyway? Can you share the story with us?

On September 12, 2016, I joined a small group of women and one man to brainstorm how to increase public awareness of the impact HIV was having on African American/Black women in the U.S. We called ourselves the Sankofa Collaborative and decided to host a national conference. Many told us that we would not succeed. We did it anyway.

On November 2–3, 2017, the Sankofa Collaborative sponsored the Paradigm Shift National Conference at the renowned Morehouse School of Medicine in Atlanta. The conference grew out of an urgent call from Black women coming together and saying, “Enough is enough — we must do this for ourselves.”

The two-day event, titled “A Paradigm Shift: The Impact of HIV/AIDS on African American Women and Families,” provided a unique opportunity to spotlight an imminent and emerging need to address the devastating impact of HIV/AIDS on Black/African American cis and transgender women and their families, as well as the inadequate level of funding, research and policies to combat these issues at the local, state and federal levels. More than 400 people participated in the first conference. With the outpouring of support, we organized a follow-up Summit, “Paradigm Shift 2.0: Black Women Confronting HIV, Health and Social Justice,” in observance of National Black HIV/AIDS Awareness Day, February 6–7, 2020, at the Loudermilk Conference Center in Atlanta.

Did you have a time in your life where you had one of your greatest setbacks, but you bounced back from it stronger than ever? Can you share that story with us?

Early in my work career, it was almost impossible to find paid work that allowed me to fulfill my social justice values, so I began to live a double life — working in the capitalist business for pay and volunteering in community-based non-profits for inspiration. It was often a schizophrenic existence because the core values and principles of profit-driven organizations and mission-driven organizations were incompatible. This issue finally came to a head after I received what I thought was a dream job that would meet both my needs. I went to work for a local television station as the Community Affairs Director at a supposedly progressive media conglomerate noted for its affirmative action policies. I became the first person of color (once again) on the Executive Management team. The corporate executives loved me in the role, but their enthusiasm didn’t transfer to the local support staff. I was assigned an administrative assistant who had been at the station for over 20 years. Saying she did not like reporting to me would be an understatement. She refused to directly touch me, often placing items on the desk rather than in my outstretched hand. After many confrontations, she finally told me to “make your own damn copies” and filed a harassment grievance. The irony was almost too much for me to bear. I was the face of a reputed progressive and fair television station but did not even have authority over my support staff. Discrimination suits hurt the bottom line so eventually, I was encouraged to explore options elsewhere. As a final act of justice, I placed every PSA from Black and women’s community organizations into the rotation for airing, many of which had never gotten approval because they were “too radical.” My favorite was the safe sex ads from the local Planned Parenthood. They ran for weeks before they were pulled because I scheduled them to run after midnight. My next job was as a Political Director of a reproductive justice organization.

Did you have any experiences growing up that have contributed to building your resiliency? Can you share a story?

My mother was the primary agent of my resiliency. She nurtured me to believe there was no such thing as “can’t” and that I could accomplish anything I was willing to work hard to achieve. Family values that emphasized faith, hard work and the power of each individual to overcome adversity helped me develop a positive vision for the future, which ultimately served as a life preserver when I became a mother at 15. My mother had a saying, “It’s not the changes in life that are important, but it’s how you react to them that makes a difference.” I would play my mother’s words over and over in my head as a young girl struggling to understand my role in a Black and white world that did not value little girls of color. My skin was tan, and I had “good” hair that wouldn’t kink into an Afro. I inherited these characteristics from my multi-ethnic DNA. I was smart. I spoke English well and I loved to read like everyone else at home. I also wrote poetry. These things made me different. They were a reason to declare me not Black enough and to be accused of trying to be white. This was the worst possible sin in the “hood,” and yet this difference did not serve as a passport into white society. As a result, there were many efforts at informal social control aimed at me as a child growing up. I became a target for bullying. To survive, I learned how to negotiate and when to fight back. I have been “different” all my life. I was different in high school as a teen mom. I was different as an unapologetic Black woman feminist advocating for reproductive justice. I was different from an African American woman leader advocating for gender equity within the HIV community. However, being different has provided a lesson in perseverance, personal empowerment, and tenacity, that along with my mother’s words, will remain with me for the rest of my life.

Resilience is like a muscle that can be strengthened. In your opinion, what are 3 to 5 steps that someone can take to become more resilient? Please share a brief story or an example for each.

Radiate possibility!
Practice the golden rule: with kindness, compassion, and forgiveness. 
Celebrate accomplishments and legacy.
Play, sing, dance and laugh as often as possible.
Remember the WORLD motto, “You are not alone.”

If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.

I would resurrect the Black Women’s Resource Center, founded by Linda Burnham in Oakland almost 30 years ago, and create chapters all around the world. The purpose of the centers would be for the development and empowerment of Black women’s leadership. The centers would be a safe place for healing and respite, provide advocacy and support for Black women recovering from gender and racial bias, discrimination and violence, and sponsor leadership development and sustainability retreats. Black women are the most resilient creatures on the planet and now more than ever, the planet needs Black women’s leadership.

We are blessed that some very prominent leaders read this column. Is there a person in the world, or in the U.S. with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them.

I would love to have lunch with Megan Markle and Melinda Gates. These two women need to join forces to leverage their tremendous platforms on behalf of the empowerment of women on a global scale. Megan is brave, charismatic and unapologetically a feminist of color. Melinda is thoughtful, creative and a leader in the philanthropic community. Together they could have a tsunami effect for positive change. I would love to brainstorm with them how this could happen and introduce them to some extraordinary women with lived experiences to add integrity to their efforts.

Here is another story to consider.

I am a child of the sixties, shaped by the revolutionary political and social changes that defined that era, coming of age in a time of social change in the U.S. I witnessed the civil rights movement, the women’s movement, the peace movement, the sexual revolution, hippies, Black Panthers, and Black Nationalism. There were many iconic symbols representing various social change movements, but the symbol that has remained forever etched in my conscience as a defining representation of my cultural heritage is the raised black fist representing Black power. I was 15 years old when medal winners John Carlos and Tommie Smith gave the raised fist salute during the American national anthem at the 1968 Summer Olympics in Mexico City. This was done as a sign of Black power and as a protest on behalf of the Olympic Project for Human Rights. I’ll never forget the excitement and awe that resonated throughout the Black community that day. It was as if with that one act, hundreds of years of oppression were thrown to the ground and we could stand up straight with pride. That same year, James Brown recorded what would become the Black Nationalist anthem, “Say it loud, I’m Black and I’m Proud.” The song and the raised fist became intrinsically linked as the symbols of the black liberation movement.

The raised fist said it was a new day in America. Black people would no longer bow our heads, shuffle our feet or cower in the corner shaking in our boots from the presence of white people. The raised fist said that we were citizens too, that this country was built on our blood sweat and tears and that entitled us to the same rights as everyone else. The raised fist said that we were powerful and that we would have justice and equity by whatever means necessary. The raised fist was a demand for respect and freedom. But most of all, the raised fist was an act of unprecedented defiance and courage that reverberated across the country inspiring a chain reaction that fueled the passion of a new generation of African Americans demanding equality.

This was all heady stuff for an impressionable teenager just beginning to understand the realities of being Black and female in America. Little did I know at the time, how the power of that image would shape my vision of the world and influence subsequent actions for decades into the future. It meant something important to me then and still does today.

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