Missouri HIV Justice Coalition holds advocacy day to #EndTheStigma 

Imagine your next door neighbor calls to invite you to a dinner party. The date and time work for you, and you enjoy your neighbor’s company, so you say yes. As the neighbor ends the call, she says, “Oh, I’m going to seat Jack next to you. He has coronavirus. Is that okay?”

What would you feel? How would you reply?

Presently we hear something about coronavirus just about any time we turn on the news. There’s debate about how serious the danger is and what steps we should take to protect ourselves. At this point, I would be nervous about sitting next to Jack at that party!

A similar period of confusion and panic occurred as deaths due to a mysterious virus began to be widely reported in the early 1980’s (although the first death due to an AIDS-related illness is now thought to be Robert Rayford, an African American teenager from St. Louis in 1969). In 1982, the label “Gay Related Immune Deficiency” (GRID) was used by some, creating a mistaken public perception that only the gay community was in danger from what came to be known as the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). Stigma about same sex relationships increased hysteria about HIV/AIDS, and many states, including Missouri, passed misguided laws that did not reduce transmission of the virus, but did criminalize some people living with HIV (PLHIV).

Much has changed in our understanding and the treatment of HIV and AIDS since the 1980’s. An HIV diagnosis is not a death sentence, but many do not realize that because the last information they received about HIV came from a made-for-television drama like “An Early Frost” that they saw long ago.

A further complication is racial disparities in HIV diagnosis, with the CDC in 2011 citing an almost eight times higher rate of HIV infections in Blacks than that observed in Whites. Further research shows that this is not about Blacks and Latinos practicing more risky behaviors than Whites, but the virulent racism of U.S. society that adds yet another scoop of stigma to being HIV-positive. We would do well to instead examine how structural inequality impacts access to prevention, diagnosis and treatment. 

Missouri needs to update our laws to reflect advances in medical science and to approach public health concerns with health care access and harm reduction in mind, rather than incarceration. Yet it is hard to change a cruel and medically inaccurate law when deep-seated prejudices like racism, transphobia, and homophobia are involved.

What works when so many biases are involved in bad public policy? On the Missouri HIV Justice Coalition Advocacy Day on January 22, I had a first-hand opportunity to observe what works. I had the honor of being a member of an advocacy team on which I was the only HIV-negative person. My main job was to introduce three PLHIV to legislators with whom I had some degree of relationship. Then I watched in amazement as they shared stories from their lives that illustrated the problems with Missouri’s current laws. They were warm. They were funny. They told stories about their family members that touched the hearts of legislators with whom we met. Bless them for the amazing work they did that day!

As my friend Gary Hirschberg told me at a Dismantling Racism event sponsored by the National Conference for Community and Justice in 1996, “The most effective way to break down prejudice is through repeated positive interactions with the object of your prejudice.” I have found this to be true in my own life, and I have seen it demonstrated repeatedly as Empower Missouri has worked to change other laws that involve bias.

Let us not minimize the high cost that is paid by personally impacted people who tell their stories. Not only do they give of their time and talents, they often are met by rude questions and hostile stares. Like a tiny seed that sends down roots that can break concrete open, the work of PLHIV through the Missouri HIV Justice Coalition is overcoming decades of stigma and misinformation and shattering barriers.

Won’t you join us in working to support House Bills 1691 and 1692 to change Missouri’s outdated and scientifically inaccurate HIV-specific criminal codes? Fill out the form at this page to receive regular updates from the coalition. Let’s make 2020 the year to end the stigma and change the law.

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