blog

Collective Liberation and Uniting to End HIV

Over the past year, I’ve had the opportunity to collaborate with the United we Rise Coalition on a mission to embody collective liberation — both for the well-being of people living with HIV and for the improvement of the physical and mental health of all our communities. 

As that work continues to expand and generate new ideas, I find myself in a space of reflection on what has been and what is to come. The five key focus areas (Intersectionality, Sexual and Gender Identity, Policy, Community Engagement, Leadership + Organizations) of United we Rise are phases of my journey, flowing in and out of memories, and forming my understanding of this work. Putting those moments and core areas into focus forms a clear path in the direction of liberation for Every(Black)Body.

 

Intersectionality

 December 1st was World AIDS Day, marking the 32nd anniversary of the global event memorializing people who died and celebrating people living with HIV. The first time I’d heard about AIDS I was a senior in high school. It was 1983 and my mom worked at the phone company in Hollywood, one of the country’s first equal opportunity employers. That was pretty significant then because it meant that my mom’s coworkers were overwhelmingly BIPOC and many were queer. Over the years they formed a tight-knit family, choosing each other’s love and acceptance after being rejected by their families of origin.

Our small apartment in Echo Park became a temporary home to friends who had nowhere to go after a breakup or were just trying to save up for a place of their own. Our home was the place Linda found a bit of safety and support to stop smoking crack for a while. Johnny needed a place to crash after moving to LA from Michigan. Gina, Jeff, and Sharron often came over to pre-game while my mom got dressed to go to the Black Feather, a little dive bar over in K-town. They were generous with their drugs — I remember doing my first bump with Jeff and then being chastised by Gina while she teased my hair.  I didn’t realize it then, but Gina and my mom were the matriarchs of this extended family. Little did any of us know in less than a decade they’d all be gone.

 

Sexual and Gender Identity

Gina took my breath away. She was a tall Afro-Latin@ with caramel skin and big 80s hair. Born and raised in El Paso, at fourteen Gina’s mother took her to a psychologist to begin the process of gender reassignment. This was in the 1950s, in Texas, when gender reassignment was pretty unusual, even more so in Latinx and Black communities. Like my mother, Gina’s home was a sanctuary for her trans sisters who weren’t so fortunate. My sister and I would go to cookouts at Gina’s to chill with her and the girls. Lisa Lisa, SOS Band, and Exposé played in the background while we ate,  talked shit, and danced in our cut off sweatshirts and jellies (if you know, you know). We were family.

When Gina died in ‘95 I was already living in Massachusetts and working in a needle exchange program as an HIV counselor. I didn’t have the money to go home for her memorial. My mom said it there she learned why Gina died. She’d gotten HIV from her husband who used to shoot dope and was diagnosed far too late for antiretroviral therapy to be effective. She never told my mother–out of all the secrets they knew about each other, this was the one she couldn’t share. Stigma and trauma stood as barriers to unconditional love and compassionate care.

 

Leadership and Organizations

So much has changed since she died. While I struggle with my own survivor’s guilt,  I am grateful to be on this side of the epidemic, where HIV is now a manageable, chronic illness and the sting of stigma is slowly fading. Where HIV advocates have created one of the most powerful “special interest” groups of the last 50 years, influencing public policy, public opinion, and, of course, budgetary appropriations. We’ve learned the game and built a well-funded network of AIDS Service Organizations (ASOs) offering competitive salaries, robust 401k programs, and impeccably designed offices and lobbies. Let’s celebrate how far we’ve come—we earned that shit! 

Celebrate every time you see a commercial about HIV medication featuring healthy, fabulous, fearless HIV positive folks! Celebrate the HIV community’s impact on language and culture! Celebrate the leadership of this community, who demanded intersectional public health approaches before Kimberlé Crenshaw coined the phrase! Celebrate every badass BIPOC queer and femme advocate who did not and will not remain silent! Nothing about us without all of us—am I right?! 

Every(Black)Body is our opportunity to celebrate — COVID be damned. If COVID’s done anything positive it’s given us access to each other in ways we’d only imagined. A virtual convening like Every(Black)Body sounded like something unlikely and far away. But the future is here. 

 

Community Engagement

Indeed, Black leadership in HIV has defined the trajectory of the movement. Building on the visionary brilliance of Black feminists and Black gay men activists in the 70s, the radical fierceness of the Panthers, the strategic preservation center of the civil rights movement leaders, and the legacy of risk-taking of ancestor Harriet, Black leadership in HIV demanded our seat at the table. Every(Black)Body is the natural next step in our evolution, where Black folks aren’t just sitting at a table in a cold white boardroom. Every(Black)Body looks more like the family cookout. I’m talkin’ bout an unapologetically Black table at the cookout. Where we dance, kiki, clown on our cousins, hug our aunties, and plot and plan. But Black HIV leaders, I need to ask you: did Gina, Linda, and Johnny get an invitation to the cookout?

What Black person hasn’t been touched by the war on drugs, intergenerational trauma, and poverty? Whose Black family escaped the unrelenting structural violence of capitalism and white supremacy? Do Black people who use drugs in our families see themselves reflected in HIV programs, policies, and workforce?  As a Black leader in HIV–do you embody the core tenets of harm reduction accepting that for better or worse drug use is a normal and significant part of our culture. Ignoring drug use = erasing people who use drugs. Harm to one is harm to us all am I right?

As COVID death rates skyrocket so are the rates of fatal overdoses–it’s the epidemic within the pandemic. And it should come as no surprise to Black leadership in the HIV community that the largest increase of overdose fatalities is among Black folks. Provisional mortality data collected by the New York Times shows rising drug-related deaths well into 2020. Your local harm reduction program is working overtime trying to get naloxone into the hands of people who need it or locate a treatment program or shelter with an open bed, but COVID ain’t making it any easier. Syringe service programs are stretching their meager budgets as far as they can go: many have converted into food banks, day programs, and COVID testing sites. I was recently on a Zoom call with a number of leaders of harm reduction programs when one of them said that harm reduction programs can keep people alive long enough to get COVID. 

Damn.

Harm reductionists are scrappy. The founders of harm reduction in the U.S. were BIPOC, queer, trans, and people who use drugs. They were the outsiders within the HIV movement, shouldering the fight against the double stigma of being HIV positive and a drug user. Over the years, we figured out ways to support our work, whether through all-volunteer programs or the generosity of individual donors—friends, families, or good samaritans trying to make a difference. Or through generous, steady allies like the Comer Foundation, Elton John AIDS Foundation, Open Society Foundation, and AIDS United. Time and trauma have made harm reductionists a pretty insular group, sort of extended family providing the kind of mutual aid that saves lives and builds community. 

 

Policy

Since the first World AIDS Day event, the spotlight on HIV has receded, largely due to powerful advocacy that led to substantial, sustained funding and breakthroughs in treatment technology. But I believe Black people who use drugs and drug users in general aren’t fully reflected in the successes we’ve achieved. In the early 2010s, harm reduction advocates were already sounding the alarm about the growing rates of overdoses and HIV incidence among people who use drugs. During the same time, dozens of AIDS Service Organizations figured out how to bill for Medicaid reimbursement, tap into 340b drug pricing programs, or transform themselves into federally qualified health centers, but drug users and the programs serving them were left behind. There wasn’t a corresponding funding increase for syringe service programs at that time, and in some cases, transforming from an ASO to an FQHC resulted in closing their pre-existing needle exchange if they didn’t have sustainable grant support because we can’t use federal dollars to support syringe service programs. And Black people who use drugs bear the brunt of those decisions.

Black folks know far too well the collective impact of traumatic experiences on entire groups of people, communities, and society itself. These days trauma feels like the familiar constant in this new reality.  COVID is teaching people who’ve never understood what it means to be deprived of basic privileges they take for granted. We’re beginning to see how collective trauma can change societal norms and how it functions. If history is any gauge, the opioid crisis and COVID-19 will completely transform society, not unlike HIV and the collective trauma we lived through during the height of the epidemic. Not unlike slavery and genocide.

Harm reductionists are overwhelmed with individual and collective trauma as watch helplessly the rising numbers of overdoses compounded and likely caused by COVID. We are running out of resources, patience, energy, and hope. We need the full support of Black leadership in the HIV community to change this trajectory. 

Many people use drugs trying to overcome a lifetime of individual and collective trauma made all the more insurmountable by structural violence. Everyone deserves to have a sense of purpose and belonging. My mom and Gina unknowingly modeled harm reduction by showing their love and acceptance of people no matter who they are or what they do. Harm reduction is about building positive connections with people who use drugs and don’t judge them for their behavior because human connection is the foundation of community. 

The emergence of the harm reduction movement was in direct response to the lack of attention and political will to address the raging HIV/AIDS epidemic among PWUD in the 80s. The founders of harm reduction in the US were a group of radical badasses — activists, community organizers, researchers, social workers, PWUD, queer folks, Black and indigenous people of color — all of whom made the bold decision to care about PWUD who were dying from AIDS.

To all my badass friends and colleagues who are HIV Advocates: let’s get that ban lifted once and for all! And let’s advocate for a National Harm Reduction Strategy and centers Black and Brown people who use drugs. We’ve done it before and it’s working. Until then, keep each other safe, unite, mobilize, and let’s keep working towards ending HIV for Every(Black)Body. 

   

Power to the people

-Monique