Kneeshe Parkinson loves people—and people love Kneeshe Parkinson. In the hour we spent sitting outside, she made friends with a young man whose hair was dyed all the colors of the rainbow, and we ran into one of Parkinson’s doctors. When she told the young man that she was going to dye her hair to look like his, he was flattered and encouraged her to do it. When Parkinson introduced me to her doctor, sharing all the work the doctor had done to help her, the doctor demurred. On both occasions, Parkinson was bursting with joy, excited to make connections.
For almost 20 years, since her own diagnosis, Parkinson has been sharing her story as a Black woman living with HIV to improve care, keep women living with HIV connected to treatment, and provide an example of a woman thriving with the virus. She is a member of Positive Women’s Network-USA (PWN-USA), is on staff at Washington University’s HIV clinic, and is also the founder of Kneeshe Speaks STL, an enterprise she started in order to share her story and help others. In addition to her work, she raises a daughter, who, on the day we met, was out looking for a dress to wear for an upcoming beauty pageant, representing Missouri as a finalist.
Unknown to some people is the fact that Parkinson is a second-generation AIDS activist. Her aunt, Helena Hatch, is a towering figure in the HIV landscape of St. Louis, as the first Black woman in the city to be out about her status. This was a game-changer in the 1990s, when people still were fighting the misrepresentation of HIV as only being a gay white male disease. Hatch, along with her mother, the Rev. Frances Cleveland, an African Methodist Episcopal pastor, spoke out in public, working with doctors, officials, the church, and the public to help destigmatize the illness and get women in care. The Helena Hatch Special Care Center for Women at Washington University School of Medicine was named in her honor.
In the following conversation, Parkinson speaks more about her aunt, the work of empowering women living with HIV, and the importance of telling stories, including the story of Robert Rayford.
Theodore Kerr: How did you get your start in this work?
Kneeshe Parkinson: It really begins with my aunt, Helena Hatch. She was a legend in St. Louis when it comes to women and HIV. She was the first Black woman to be out about her positive status in the city. Her motto was “Women Need to Know.” It was a really big deal, not just for Black women, but women in general, to be tested. Since then, our family has worked very hard to live by her legacy.
TK: Would you say your aunt helped you with your own diagnosis?
KP: Yes, she helped me see there was women before me, who could guide me. I gathered a lot of strength from her when she was alive. However, other women around me have also influenced my relationship to my diagnosis. I am thinking specifically of Jessica Forsyth. I was her first client, and she was my first case manager. We were learning together. Jessica guided me in a special way to provide hope and love that influenced my drive to learn how to fight back and be more responsible and in control of myself.
TK: Women have played a big role in your HIV story.
KP: But not only! Outside of the women who guided me, it was the white gay males that embraced me, and that was monumental for me. It was no women in the community that reflected my diagnosis. It was somewhat sad. I met women while receiving my care at the Helena Hatch Center.
TK: What would you have wanted from a community of women?
KP: We should have been able to provide ourselves a little more hope, strength, and love, but we did not have a torch to grab hold to. It was not until later that more women started coming forward and saying, “I’m newly diagnosed,” or, “I don’t even know if I can accept this.”
TK: What do you think changed that allowed women to start sharing?
KP: A lot of it was my aunt. In addition, there was a video that came out called Women Need to Know, featuring local women, like Tiny, Heidi, Stephanie, Joy, and a few other women. It provided an opening for women to see other women living with HIV. It provided us with a vision, a response a common reaction: “OK, I just got this diagnosis, what do I do with it?”
TK: That sounds like an amazing video.
KP: It was—it made a difference, but also the generosity of the Helena Hatch staff was vital in getting women to share their stories. The staff was tireless in their work. It was not just a 9 to 5 job for them.
TK: That was a lot of pressure for caretakers.
KP: Yes, and they were learning. Remember, medications were not readily available then.
TK: Even in ’97?
KP: In ’97, they still had AZT, and then I think that was the year I received my first regimen of Combivir and Viramune. However, we still did not know what that was going to do then.
TK: Were you scared?
KP: Hell yeah, I was scared. Was I going to die? And if I didn’t die, how would I be accepted? At that time, a lot of my family was not in my life. My sister was around, and she did the best that she could. However, I was coming into adulthood, and I had to think about the future. I had graduated high school and was figuring out how to get a job, while managing medical visits and things like that. This is where Jessica comes in. Having a good case manager mattered. She would call me out on my mean and suicidal thoughts and get me to do stuff. Part of what made her so effective with me is that I never felt rushed.
TK: You have been doing HIV work ever since.
KP: I have. Actually, my first job was working with an organization called Women’s Job Connection, started by Deborah Keenan. She received a five-year pilot grant to help women re-enter the workforce who had a diagnosis of HIV. She hired me as one of two certified job developers. We learned how to be certified employment specialists. It went well for five years, but we were not re-funded in Saint Louis, Missouri. Then I started to work as a peer/family advocate with Project ARK at Washington University, on a grant they received to provide medical access to women. It was there and then I learned how important it was to have Black women in the room, to share a needed point of view. I knew what to think about when it was time to deliver services and conducting outreach.
TK: You have really witnessed the impact of systems on someone living with HIV.
KP: Absolutely. It has been crazy. It is interesting to think about how people’s lives are impacted by funding that is available, halted, or waiting to be reauthorized. It can be hard to keep an eye on the fact that we are all human; this is something I have had to teach. People living with HIV are not just dollar signs, or case numbers. Like, how do we have meaning behind numbers?
TK: A key to the work you do seems to be speaking from experience. St. Louis is not a city where many people are out about their status. What makes you share your story?
KP: If there is no face available, more people would die, more people would not be in care, and more people would struggle.
TK: Does whose face is being shown matter?
KP: Yes! People want to relate to someone that looks like them, it makes relatable moments possible. It helps people ask specific questions: Can I be in a discordant relationship? Can I have a baby? Can I go to school? Can I finish school? If we as women do not see someone who looks like us doing these things, we assume those milestones are for other people. That is why I do what I do, so people can see a young woman living in the community, with HIV, that has a high school diploma, that went back to school, that has a daughter. It is about empowerment and influence.
TK: Is that where social media comes in?
KP: Social media plays a big part. This interview today will be shared on Facebook and Instagram, and I think it will be profound for women reading it. They will feel welcome to be themselves, and they would be like, “Damn, Kneeshe was interviewed by TheBody.” Along with having a platform that was developed called Kneeshe Speaks STL, allowing people from all over the world to benefit from my energy, to be able to talk with each other and receive joy and inspiration daily.
TK: What do you hope women reading this take away from the interview?
KP: Health. Healing. Triumph. If your health matters, your healing is going to matter, and your triumph then damn sure matters.
TK: Can you say more about triumph?
KP: Triumph can be anything that you want that enables you to manifest in your own being. Therefore, for example, stigma is real, and that is a beast that we’re fighting every day. However, within that, I know I just want to be happy, so whatever makes me happy, I am going to go for it. It is not easy. Stigma might get in my way, but my journey to being happy is not going to end because of stigma. That is triumph.
TK: How do people do that?
KP: To start: Tell your story, tell it to yourself, and go from there.
TK: Pivoting a bit, what about Robert Rayford’s story, when did you first hear it?
KP: Probably my second or third support group, maybe. It was at a church, and I remember a man talking about him, and it made me think about how Robert was one person in this huge city, and I wondered where the rest are? What other families are not telling their stories about HIV, not putting their names into the structure of the story we need to tell about HIV?
TK: People knew who Robert was?
KP: Yah, it was just like, “You know, there was a guy that died, and his name was Robert Rayford.” These guys mentioning him were much older than I was. It was really mind-boggling, not in a bad way, though. It’s empowering, because I still think a lot of people don’t know of him.
TK: It seems like there have been periods where there was information about Robert circulating, and then not. I wonder if you have any idea why more people do not know about him currently?
KP: I guess over a period of time, awareness has to filter back out for other people to understand that there was even a story once, and then people have to do it all over again—talk about where he came from, what his upbringing was, and how and why the story is so powerful and impactful.
TK: Is there value in telling his story?
KP: It depends. I think moving forward, we should cultivate stories about the histories we are living in now. Like, who is telling Mary Bowman’s story? I can tell you—she was a poet, songwriter, and performer who tackled HIV for so many. She fought stigma, just as I am doing today, using my voice and my face to reach people hurting due to stigma. Stigma kills. We need to talk about her life. I think her legacy should be brought forward. In fact, we need to bring many stories forward, like from our heterosexual women and men, along with trans women. We need to break the barriers of silence.
TK: That is why your work is important.
KP: Telling my story is key. I am part of this community called HerStory Global Empowerment, [which] will provide a platform for women around the world to speak. My mentor Gertrude Mastche has provided meaning behind my voice and cultivated my journey. I am also very proud to be a member of PWN-USA, a national leadership body for women. Part of our work at PWN is telling our stories, taking it to legislators, and helping connect our lives to their votes. For me, this work is grounded in phrases I like to share with people.
TK: What are they?
KP: Hope! Humanity. Opportunities. Perseverance. And being as exceptional as you can be.
Even as the person who came up with this phrase, I can tell you, it is not easy. However, there is a light at the end of the tunnel, and on our way, there is health, healing, and triumph. Remember to live your life bold and full of joy and laughter each and every day!!!
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