News Center for Community Health Partnership & Research Center for Dissemination & Implementation Sexual Health

Community advocate works to amplify voices of people living with HIV/AIDS

Fast-Track Cities St. Louis just celebrated its first anniversary as one of 300+ cities around the world working to end HIV/AIDS by the year 2030. One year ago, on “World AIDS Day” (12/1), Institute for Public Health leaders joined St. Louis city and county officials to sign a proclamation that commits St. Louis to achieve a set of programmatic targets aimed at significantly reducing new HIV infections and ending AIDS-related deaths. Read more about the effort.

One of the unsung heroes working to amplify the Fast-Track Cities St. Louis initiative and to engage area People of Color who are living with HIV, is Kneeshe Parkinson, an activist and Fast-Track Cities St. Louis “Community Engager”, also works as a Community Outreach Representative at Washington University School of Medicine.

Kneeshe Parkinson

Regarding her role with Fast-Track Cities, Parkinson says, “I wanted to be at the table as not only an unapologetic black woman living with HIV, but as a voice of our community that includes LGBTQ, cis-gender (heterosexual), men who have sex with men, and other community members. Engagement means community involvement, not just riling people up and walking away.”

Dr. Elvin Geng of the Institute for Public Health and professor in the Division of Infectious Diseases at the School of Medicine, and his colleague, Dr. Mati Hlatshwayo, co-chair of Fast-Track Cities St. Louis, both interviewed Parkinson to be a part of the new initiative and gain her insight into community outreach.

“Kneeshe’s role in Fast Track Cities St. Louis is so important,” says Dr. Hlatshwayo. “Her leadership around HIV advocacy for the city and region brings a much-needed anchoring voice that represents the people we aim to serve.”

Having contracted HIV at age 17, Parkinson says it was only through the support of her social worker, Jessica Forsythe, that she was able to work through the trauma and anger associated with being HIV positive. Parkinson was introduced to programs that helped elevate her self-esteem, rid her of substance abuse, “bury old wounds, and heal.”

Watch a video produced by the organization, Greater Than AIDS, about Parkinson’s thoughts on living with HIV.

Parkinson got involved with the National Minority AIDS Council, a national grassroots organization consisting of a coalition of 3,000 faith- and community-based and HIV service organizations, which advocate and deliver HIV services in communities of color nationwide. Their mission it is to lead with race to fight for health equity and racial justice to end the HIV epidemic in America. She was awarded an “HIV 50+” grant for her project, “Level Up-Women and Men FORUM/Healthy and Strong”. The project is intended to enhance, educate, and empower the lives of those with HIV to eradicate stigma and improve quality of life with meaningful impact. In addition, the program seeks to educate allies in the community so that they can have meaningful involvement in the Fast-Track Cities St. Louis Initiative.

As a participant with the national organization, Positive Women’s Network USA, a nationwide community of women living with HIV, Parkinson is committed to the mission of preparing and involving all women living with HIV, in their diversity including gender identity and sexual expression, in all levels of policy and decision-making. PWN-USA inspires, informs, and mobilizes women living with HIV to advocate for changes that improve women’s lives and uphold their rights. Parkinson believes in the organization’s philosophy of taking action: “whether it is picking up the phone, sending an email, meeting with legislators, or talking to people on the street, there is a place for everyone in advocacy.”

Parkinson is also co-chair of the International Community of Women Living with HIV, North America (ICWNA), an organization that “envisions a world where all women living with HIV live free of gender oppression, realizing and claiming our full rights inclusive of sexual, reproductive, legal, social, economic and health rights.”

Parkinson says her goals with Fast-Track Cities St. Louis and as an advocate for those living with HIV/AIDS in St. Louis, include helping people understand the importance of being cautious of their own sexual practices and fully mindful of their health status. She says this starts at the local level with access to care.

“We can help eradicate health disparities by making politicians aware of what’s working and what isn’t and what we need moving forward,” she says. “Make them understand what we walk through daily: we need healthcare and access to insurance. We need to stop the red tape!”

Parkinson also suggests creating safe spaces for young people ages 12 and up: creating places for them to gather and engage in activities such as music, art, graphic design, and creating moments relatable to their age group. Parkinson says “being at their level and creating activities that THEY want to do, not what we adults want them to do” is vital to creating viable, healthy communities.

Her colleagues could not agree more and will continue to count on Parkinson to advocate for people living with HIV and help create solutions toward a healthier St. Louis.

“Kneeshe is truly dedicated to the fight to make our communities healthier and happier,” says Dr. Elvin Geng. “She has dedicated many years of her life to it and really is an inspiration to us all. Her advocacy helps to keep public health response focused the whole person – with individual experiences and challenges – in order to meet their needs.”