Collective Action Through Solidarity: A call to HIV advocacy and disability justice movements

This year's World AIDS Day theme is Collective Action: Sustain and Accelerate HIV Progress. HIV.gov explains that the theme,

“[....] encapsulates the U.S. government’s dedication to harnessing the significant progress that has been made through global and domestic HIV programs over the last four-plus decades, working to ensure that no communities are left behind. At the same time, we continue to innovate and adapt initiatives based on new scientific advancements, implementation research, and lessons learned from programs in the field.”

While the government has its own research and policy priorities, those of us in HIV decriminalization advocacy have worked and struggled to make sure no community is left behind, especially those most affected by HIV criminalization. 

Just a year ago, on December 1, 2023, on World AIDS Day, the Department of Justice (DOJ) announced that Tennessee, the Tennessee Bureau of Investigation, and the Shelby County District Attorney’s Office violated the Americans with Disabilities Act (ADA) by subjecting individuals to enhanced criminal penalties because of their HIV status. The announcement was in response to complaints filed by CHLP in partnership with local advocates. While the law has since been reformed, at that time, people living with HIV (PLHIV) who engaged in sex work were subject to 3 to 15 years in prison, $10,000 in fines, and lifetime placement on Tennessee’s sex offense registry (SOR).

The DOJ announcement signaled a major victory in the HIV decriminalization world but highlighted gaps in the intersectionality of our movement. Why hadn’t HIV decriminalization advocacy used a disability framework before this? Why hadn’t HIV criminal laws been seen as ableist and discriminatory against a group protected under the ADA before the 2020s?

We have not addressed the exclusion and invisibility of sex workers (and their intersecting identities) who often bear the brunt of HIV criminalization and the inherent anti-Blackness of criminalization. Women made up 46% of Tennessee’s SOR HIV-related registrants and 64% of those resided in Shelby County, which is 53% Black (and where the the aggravated prostitution law was aggressively enforced). 100% of those convicted of criminal exposure to HIV were Black.

The movement’s anti-sex work bias and fear of calling these laws a racial justice issue obstructed it from using tools to lessen prosecutions and build solidarity across groups. The movement would have to admit that groups such as disabled people, sex workers, and Black people were the metaphorical canaries in the coal mine and that without acknowledging who is most at risk of criminalization, the movement would not progress.

The use of the ADA in this way is a victory in itself as it shows that the work of HIV decriminalization is inherently linked to disability justice. Looking at statistics of who faces criminalization and discrimination, it’s evident that the HIV decriminalization and disability justice movements have not reflected upon the similarities between HIV criminalization and disability justice and how they are intrinsically linked. Many sex workers report living with a disability or turning to sex work due to institutional ableism and job discrimination, and 1 in 4 Black people identify as disabled, a higher rate than their white counterparts. Using a disability justice lens would have underscored that all people living with HIV – including sex workers, people who use drugs, and Black people – are suffering under the same oppression of ableism and that respectability politics prevented many from seeing hypermarginalized groups as worthy of protection from criminalization.

Criminalization often causes isolation from community and resources both inside and outside of prison through incarceration or through denial of resources due to criminal records. Ableism also causes isolation from community, services, and resources when public spaces are not accessible or dangerous to people with disabilities. The isolation works both ways as it disables a person more and leaves them without resources which often leads to criminalization. It creates a culture of “the Other” where folks who are disabled and/or criminalized are removed from the public sphere and their community.

Both the disability justice movement and the HIV decriminalization movement are fighting against the same systemic othering. Both movements have created declarations and principles asserting personal autonomy, rights, and the centrality of human dignity, and both movements have succeeded and struggled in addressing institutional forces that rob people of their autonomy, rights, access to resources, and dignity.

Since its enactment in 1990, the ADA has covered PLHIV. However, the HIV movement often does not frame HIV discrimination in the same vein as ableism. During CHLP’s first webinar on the DOJ findings, Dr. Bianca Laureano, a radical LatiNegro sexologist, taught attendees about the history of ableism including ugly laws, the history of the disability justice movement, and the ADA. She also highlighted the gaps in the disability justice movement when it comes to race, gender, and class. While hearing this history, it reminded me so much of the modern HIV advocacy movement. Today, many major LGBTQ+ organizations see HIV as a thing of the past especially as PrEP is seen as a major victory in the fight to end HIVOn the contrary, PrEP is still not accessible to those who are most at risk of acquiring HIV, and even under the ADA people are still criminalized because of their HIV status. The inaccessibility of resources and HIV stigma is still alive today.

Just as our modern HIV advocacy and decriminalization movement has gaps in addressing institutional forces that lead to health disparities and criminalization, the ADA did not disrupt the conditions that create ableism, racism, homophobia, and classism in this country. These gaps highlight the need to address the institutional disparities that oppress people living with HIV and other disabilities through our movement work. 

The Denver Principles and the 10 Principles of Disability Justice, both lay out foundational movement guidelines. The 10 Principles of Disability Justice, as written by Sins Invalid, calls for leadership of those most impacted. That is a similar rallying point in the Denver Principles’ emphasis on forming  “caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies,” or even today’s principle of MIPA (Meaningful involvement of People living HIV/AIDS). In the HIV advocacy and decriminalization space, we try to hold true to MIPA in coalition building and legislative advocacy, but we can fall short. And while the 10 Principles of Disability Justice calls for a commitment to cross-movement organizing, historically the faces of activism behind the passage of the ADA were white men. Despite the cross-movement coalition building, privileged white men became the face of HIV activism. This contrasts with who is most impacted by ableism and criminalization. 

More than 750,000 people incarcerated in this country are disabled, 2.5 times more than the general population. State by state, Black people make up a majority of HIV criminalization cases and are diagnosed with HIV at higher rates than their white counterparts and women make up a majority of arrests relating to sex work. Disability activism and HIV advocacy are not just for white men. It must be made clear in our work that ableism, homophobia, classism, racism, sexism, and anti-sex worker bias are what we are all fighting against. We must make clear who these forces affect the most, stand true to the principles that our forebears wrote and practiced, and adjust our principles to center the most marginalized.

These -isms are deeply entrenched in our country and in our work. This World AIDS Day, we must recommit to our shared principles of collective action, to cross-movement building, and to not leaving behind those most at risk of criminalization.