Racial Justice, an Indispensable Part of Ending the HIV Epidemic

Today is Juneteenth, the celebration of the end of legal slavery in the United States.

While 155 years have passed since that day, slavery is not ancient history. Many formerly enslaved people were still alive when my father was born, and a few were even still alive when I was born.

Matilda McCrear died in January 1940. She was the final person to die who had been brought to the United States from Africa in a slave ship. My father, the Rev. Dr. Jesse Milan, a civil rights leader in Kansas who died earlier this year, was 11 years old when McCrear died. And my father was 44 in September 1972 when Peter Mills died. Mills was the last person known to have been born into legal slavery.

Not only that, legal slavery in the United States did not end on the first Juneteenth, June 19, 1865. Slavery continued in Kentucky and Delaware until December 1865, when the 13th Amendment was finally ratified. But even that amendment had a loophole; slavery was allowed to continue as a punishment for crime.

Many states and counties created slavery programs, wherein slavery was used as a punishment for minor offenses. These laws were selectively enforced against Black people, and many people were not even guilty of the crime they were accused of having committed. Guilty or not, the punishment was not time in prison. Instead, these legislators created leasing programs so that people served these “sentences” on plantations and in businesses as forced labor. All of this meant many Black people were back in slavery, just under a different legal structure.

The last of these slavery programs ended in 1941. My father was 13.

To this day, several states continue to force incarcerated people to work. While some are paid for their labors (though typically amounting to less than $1 per hour), incarcerated people in Alabama, Arkansas, Georgia, and Texas are still forced to work for free.

While legislators were busy making laws whose punishment was slavery, they also got to work passing Jim Crow laws, segregating Black people and removing any socioeconomic and political gains made by Black communities after slavery.

Jim Crow laws and the doctrine of separate but equal were upheld by the U.S. Supreme Court in 1896. It was nearly 60 years later in 1954 when the court reversed that decision in Brown v. Board of Education of Topeka.

That same year, about 30 miles away from Topeka, in Lawrence, Kan., my father, who had just received his master’s degree in education from the University of Kansas, was hired by the Lawrence public school system as its first Black teacher. My father was 26.

President George W. Bush honored the 50th anniversary of the Brown decision in 2004. Bush appointed my father to the commission commemorating the decision. But even then, the promises of the Brown decision had not yet been fully realized. It was not until 2016 that the last segregated school closed. By then, my father was 88 years old.

None of this is ancient history. Nor is it exclusively the domain of history. The vestiges of slavery and systemic racism are a present reality.

Many people view history as a series of major events. That is how we are taught history. But the way history is lived is in the daily moments between those major events. We can trace a line all the way from slavery through Jim Crow laws, and directly to the modern disenfranchisement of Black people in the form of voter suppression laws, redlining of Black communities and the cradle to prison pipeline, to name just three.

It is from these historic and contemporary indignities that arise health disparities.

There is nothing unique about Black bodies that make us more susceptible to HIV, and yet, according to the Kaiser Family Foundation, Black people in the United States account for an estimated 42 percent of people living with HIV, 43 percent of new HIV diagnoses and 44 percent of HIV-related deaths.

The disproportionate impact the HIV epidemic has on Black people is a direct result of U.S. systems being ingrained with white supremacy.

Notice I said systems. Certainly, personal bias is a problem, but it is not enough to explain the myriad ways racial disparities show up in wealth, health care, and criminal justice, again just to name three. What’s more, by making the conversation all about individual actors, we abdicate our responsibility for addressing the systems that are rigged against Black people and other people of color.

We must change the systems if we hope to change the outcomes. Racial justice is an indispensable part of the work to end the HIV epidemic. Indeed, we have no hope of ever ending the HIV epidemic without working to dismantle white supremacist systems all around us.

The inequities in housing, transportation, jobs, and access to health care are the social determinants of health that lead predictably to racial health disparities, including HIV. This is why immigration reform is an HIV issue. This is why voting rights are an HIV issue. This is why criminal justice reform is an HIV issue.

But many of these systems are outside the direct control of HIV service and advocacy organizations. And yet, we do have control over how white supremacist systems are replicated within our organizations and community. As we work to change the system externally, we must change our systems internally. This is particularly true when we look at who has power in our organizations.

Changing these internal systems will require more than just giving a Black person a seat at the table.

As a Black gay man living with HIV, I have spent my life being the only person like me at the table. There has never been a time when I did not think I should be there. My presence has been important and necessary. But, as others have said, this is at times exhausting. And at times frightening. And always challenging. My father experienced this in his work, and it is my work now. 

But we need more than just one — or even a few — seats at the table. We need many seats. And we need to be seated at the head of the table.

That is part of why AIDS United — in collaboration with the 56 organizations of AIDS United’s Public Policy Council and the Black AIDS Institute — is creating the Racial Justice Index. The index is in development, and when complete, it will assess how the HIV sector reflects the racial makeup of the HIV epidemic in this country. It will also include a series of resources and objective tools that HIV organizations can use to assess hiring practices, leadership, talent retention and decision-making processes, all with an eye toward racial justice. These tools will help identify, remedy and dismantle the white supremacy ingrained in our own organizations.

Juneteenth is a celebration of liberation. But it is also a reminder that liberation did not arrive all at once, nor has health equity and racial equality been fully realized. We have much work left to do.

Jesse Milan Jr. is the president and CEO of AIDS United. Milan has been living with HIV for nearly four decades and is a recognized leader in the HIV community. A lawyer by background, Milan has served on many boards and federal advisory committees, given hundreds of presentations and workshops, and has received numerous honors for his tireless advocacy.