Addressing Black Lives Matter Fatigue in the U.S. HIV Community

“Diversity is being invited to the party. Inclusion is being asked to dance.” —Vernā Myers

After the killing of George Floyd, some of my white friends contacted me. They said they didn’t understand what it means to be Black in the U.S. “This is not the America I knew,” one told me with frustration.

I won’t speak for other Black people, because Black people come in all shapes and shades: I am speaking for myself. Before I migrated to the U.S., I had traveled all over the world. However, I had never been conscious that I was Black. The rest of the world does not necessarily classify people into Black and white. In the U.S., I became a Black immigrant woman living with HIV, and recently I became a mother of two Black boys.

I did not lay out the beams of U.S. structural racism. But here I am, as Black as anyone can be: I live in the house, and collectively we must fix our house. There is no room for my non-Black allies to throw excuses like, “My ancestors did not own slaves,” or, “My parents are immigrants too.”

The community of people affected by HIV is diverse. We have a tendency of assuming that we are all on the same page when it comes to Black Lives Matter. There is no reference on how to become a Black Lives Matter ally; thus, every non-Black member in our community considers themself an ally. This brings us to a question: What does a Black Lives Matter ally in AIDS activism look like?

I appreciate allies who show up with signs and T-shirts saying, “Black Lives Matter,” and march by my side. It means the whole world to me. I appreciate when, as my allies, you stand by me and show the whole world your outrage by filling your social media timelines with Black Lives Matter hashtags.

Numbers do not lie. There is a problem in our own community: HIV and AIDS disproportionately affect Black people.

According to the Centers for Disease Control and Prevention, Black people constitute 13% of the general U.S. population, yet they accounted for 42% of new HIV diagnoses in 2018. Black people represented 43% of all deaths of people with HIV that year.

Some of my non-Black allies have started to express a “Black Lives Matter fatigue” on social media, complaining that they want the spotlight back to them. Buckle up, we are in the BLM advocacy for a long run. Until we address the burden that HIV has on the Black community, there will be BLM advocacy. This is what I need from you.

On a Personal Level

I need you to listen. For so long, my non-Black allies have unconsciously silenced Black people by assuming that they have all the answers. They show up in a meeting room and say, “This is the problem, we must do this…” and then eventually give people like me the turn to speak. Too late! And whenever I raise my voice, I come across as “the ungrateful, angry Black woman.”

When it comes to Black Lives Matter, just listen and learn; you won’t lead everything.

Some non-Black allies often think that the fact that we are all affected by HIV makes our differences unimportant, adding a layer of sympathizing with me by explaining how they are related to non-white people and this removes the privileges they enjoy and makes Black Lives Matter outdated. I love you, as you are as my allies. You do not need to relate to my Blackness to be my ally.

Have My Back, Literally

Black people in the U.S. are the most hit by COVID-19. My hometown, Detroit, one of the cities with the highest Black population, has lost almost 2,000 lives and counting, the majority of whom were Black people. Detroit has created a living memorial to those who have passed due to COVID-19, to let the whole world see what the virus is doing to our city. This is a hard time of grief for my Detroit Black community. It makes me relapse in my pain when some of my allies’ social media reads like, “Thanks to COVID-19, I slowed down. I spend more time with my family; I can relax and meditate.”

Where I come from, someone cannot beat drums when their neighbor’s house is on fire. Even when people do not feel like it, they literally have their neighbor’s back. Some communities cry for days after the passing of a neighbor to show compassion. Since you chose to be my ally, do not be thankful for COVID-19. It is taking my people. Have my back, question the structural racisms that create health disparities, reach out to have my back, mourn with me. This is a critical time, and I need you.

Vote With Me

As a citizen, your vote for U.S. Congress, Senate, and the president define my destiny. If Black lives matter to you, vote for policies that advance Black lives. Vote out racist, misogynist, homophobic, and xenophobic leaders. Look at this upcoming election through Black Lives Matter lenses, show up, and cast your vote.

Speak Up for Me

When the demonstrations are over, you have the privilege of putting down your signs and T-shirt, but I am Black every day of my life. When your family and friends are making jokes or using racial slurs, do not go along, do not join in, and do not keep quiet either. Speak up for me—I expect you to be my representative everywhere.

At the Organization Level

According to Funders Concerned About AIDS, in 2018, only 15% of HIV donors focused on Black, indigenous, and people of color (BIPOC) communities.

Donors know that Black people disproportionally carry the HIV/AIDS burden, but they are not allocating enough resources to address the issues. If Black Livers Matter in the people affected by HIV community, now is the time to renew commitments to funding Black people.

Diversity is who we are, and inclusion is what we do.

When it comes to HIV projects and their implementation, I am not a number, a consumer, a data point, or token. I am a human face, a partner and leader in the fight. AIDS organizations must resist the urge to stand on my shoulders to access funding and then drop me.

Let Black people living with HIV teach you at the conferences about how resourceful we have become because of our lived experiences. For instance, I have lived with HIV all my life. Let us have Black Lives Matter plenary sessions, workshops, and presentations at each HIV/AIDS conference.

Include Black people throughout project conception, development, implementation reporting, monitoring, and evaluation. Use the BLM lenses all the time at each stage of your projects, in all your practices, from hiring to firing.

Also, ask me how you should describe me. I am not a person of color, I am Black and proud.

Compensate People Living With HIV

Black people constitute the largest number of people living with HIV. It has been an acceptable custom to have people living with HIV spend time on boards and planning councils as volunteers next to people making gazillions of dollars. There are endless phone calls, webinars, surveys, and Zoom meetings, and Black people living with HIV are meant to feel grateful that they are even invited. If Black lives matter, AIDS organizations have to put in place policies on compensating people living with HIV for their time. We have the resources; all we need is to set up policies to compensate for the time and dedication people living with HIV—mostly Black—put into activism.

Reflect the Demographic of the People You Serve

Hire Black people. If Black lives matter, HIV and AIDS organizations from boards of directors to staff have to look like the AIDS epidemic and the people they serve. People living with HIV’s lived experiences have to be valued. In a July article from TheBody, a white leader of an organization in Michigan insists that they do not have Black people and non-white people in leadership and other meaningful positions because Black people don’t have the required degrees. Yet the organization serves Black people.

This kind of practice is rampant in our community of people affected by HIV. Disqualifying Black people living with HIV’s experiences is a macro offense fueled by structural racism.

Fund Black-Led Organizations

Funding agencies can take the lead by ensuring that Black-led organizations and organizations serving Black people have the resources they need to serve Black communities. As far as HIV and AIDS is considered, if Black Lives Matter, Black people should be meaningfully engaged, host the party, and invite others to dance.

Change takes time. I do not expect you to have all the answers, and that’s OK. We are a work in progress. It comforts me to know that as my allies, you are listening to me, and we are in all this together.