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As Race and Privilege Take Center Stage in HIV Community, a Call for Listening and Allyship

June 13, 2016

Olivia G. Ford

Selfie by Olivia G. Ford, courtesy of Positively Aware/A Day With HIV

"This is not about whether or not you are our friends. You need to understand that you are living in a system that is oppressing this group of people.

As individuals, you may not buy into the fact that you are part of an oppressive system, because you do advocacy work. But you need to understand that it doesn''t matter.

We are all a part of this system, including you, and what are we as a community going to do?"

- Vanessa Johnson

The second HIV Is Not a Crime Training Academy was a many-layered opportunity for participants to practice the art of listening.

Convened on a Huntsville, Alabama, university campus over three days in May 2016, the training academy was conceived and developed entirely by and for people living with HIV and close allies. The event exists to center the voices and demands of people living with HIV, to uplift the stories of abominable injustice experienced by survivors of HIV criminalization and to galvanize and equip advocates to oppose such discriminatory uses of the criminal law in their home states, in the military, at the federal level and across the globe. The expectation was that we as participants were there not just to listen to these speakers and their stories, but to learn -- to be actively changed by what we heard and as a result to do things differently as advocates, writers and community members.

At the first HIV Is Not a Crime gathering in Grinnell, Iowa, in 2014, the sessions focused largely on unpacking the process of mounting a legislative campaign. Huntsville attendees also received training on important skills such as using data and collaborating with attorneys. The dominant theme, however, was the mandate to understand and combat HIV criminalization as a component of the system of over-policing and mass incarceration that disproportionately and unjustly impacts black people, queer folks, immigrants, drug users, sex workers, transgender individuals and those living with and without HIV at the intersections of this constellation of experiences.

These dynamics were frequently referenced at the Grinnell gathering; in Huntsville, these discussions took center stage.

On Privilege

Credit: Jennie Smith-Camejo, Positive Women's Network - USA

Multiple sessions highlighted the impacts of anti-black racism and the intersections of race, sexuality and gender on HIV criminalization, as well as lessons learned from the "war on drugs" and the sex worker and immigrant justice struggles.

Charles Stephens of the Atlanta-based Counter Narrative Project was a presenter at several training academy sessions. "The value of talking about issues like racism, patriarchy and intersectionality is that it forces us to confront our differences," Stephens said, "and to think more expansively and more courageously about our movement."

Not all participants in the training academy were ready to engage in these kinds of conversations.

"Some folks are very understanding and get that we have to do this," said Vanessa Johnson, a longtime advocate and veteran of the people living with HIV self-empowerment movement. In her presentation on the power of microaggressions, Johnson asked attendees to wear Band-Aids from a large box in the lobby to illustrate the number of times they'd experienced "ouch moments" from hurtful comments while at the training academy. The box quickly emptied.

"Other white folks were saying, 'Why do we have to talk about that?'" she recalled. "'Isn't this a conference about HIV criminalization? What does race have to do with it?'"

It's astonishing that at a training academy focused on the many facets of criminalization and how to more effectively oppose them, any attendee would come away not understanding that race has an impact on how justice is or is not carried out. However, in a society often erroneously called "post-racial," acknowledging such differences can be taboo, even if doing so is the first step toward working together to lessen the negative effects of bias.

"People do not hear the truth as it is being spoken. They hone in on one phrase and that's all they take away," stated Tiommi Luckett, an Arkansas-based advocate and member of Positively Trans and other national networks. "People with privilege don't realize the privilege that they have, and they exert it constantly because they're unaware of it."

I spoke with Luckett about a session she moderated, entitled Anti-Blackness and HIV Criminalization: Grounding Ourselves in Racial Justice. The plenary focused on the specifically racial nature of the case of Michael Johnson, a black, gay Missouri youth currently serving a more than 30-year sentence under the state's HIV criminalization statute. "[Panelists were] talking about racist white people," she explained. "White people [in the audience] were shifting their body positions because they were feeling uncomfortable." As Luckett observed, one of the few white audience members took the mic and defended their position as an ally to people of color and a non-racist.

"No one is saying that you yourself are racist -- but in this institution of America, it is undeniable that racist practices are still going on today, she said. "People with privilege can't differentiate. . . . It's all personal: 'Well, I'm not racist. I have a black friend.' Congratulations!"

Opposing racism, as detailed in a recent resource by The Well Project, is not just about individual white people treating individual people of color well; it's about disagreeing with the ways that systems in our society have historically excluded or stigmatized nonwhite people. It's also about recognizing how some people benefit from systems that are biased against others -- what is commonly known as privilege.

But in a system that privileges some to the detriment of others, people see bias not in those unequal dynamics but in efforts to point them out. Instead of working to change how these harmful dynamics exist in our lives and work, we are taught to ignore and play down difference.

"It's dangerous to elevate narratives that seek to be neutral around lines of difference around race, gender, sexuality and so forth," Stephens mused. "There are spaces even today where you can have a conversation about HIV criminalization and not talk about race or gender or economic distress, and other areas of vulnerability, when we know that these same lines of difference have implications for sentencing practices and incarceration rates."

"But I think there are some folks that are very invested in this race-neutral narrative in HIV criminalization," he concluded, "because to deal with race is also to deal with white privilege."

If we're not aware of how racism and privilege operate, we risk reproducing them in our advocacy work.

"When bills are written and you have to go before your lawmakers, people have said to me, 'Maybe we should get a white woman to go and talk first,'" said Deon Haywood, founder and executive director of Women With a Vision, in New Orleans. "It feeds into the rhetoric of racism, fear and bias. For example, if every time I come before you and I'm talking about any bill that would help someone struggling with addiction, and you only see white people [talking about needing] care and compassion and something other than jail, [then] we are never seen as people who need that.

"When you talk about anti-blackness, you're talking about that whole erasure of who we are, and never really having an opportunity to stand before people and fight for who we are. Which is why it always looks like we're not at the table -- but actually, we have been told not to go to the table so many times, as a strategy of appeasing lawmakers."

Though Haywood was not present at the training academy, she was certainly there in spirit. The work of Women With a Vision is famous throughout the community for centering the experiences of a diverse community of black cisgender and transgender women in Louisiana and securing groundbreaking legislative successes that many told her would be impossible using her organization's approach.

"Some of us who are affected are privileged as well. It's important for us to be able to share access and prepare people. . . . If you don't put the people who are directly affected in front, who's gonna do it?

"If [lawmakers] already have an idea in their head about who I am, and who people who look like me are, then I shouldn't pacify them," Haywood concluded. "I need to come before them as much as I can."

On Listening as a Person With Privilege

For Vanessa Johnson, the conversations in Huntsville about racism and sexism were some of the deepest she has witnessed in this community. "It was so visceral that you could not escape it, because people were willing to stay in it," she said. "Many people did their best to stay present and really hear what other people had to say."

That art of listening is an excellent tool for advancing justice. It is not one that is often practiced our culture, even in the HIV community. Said Luckett: "Most people do not listen. They come in with their preconceived ideas. . . . As a transgender woman, speaking to a roomful of cis women who came in with an idea that I would be a man in a dress, with that looming in their minds, they cannot hear anything that I said."

Luckett described her experience co-facilitating a session at the training academy about the impact of criminalization on transgender communities: "I showed a video in which I described being in an all-male jail for 12 days as a transgender woman and the horrors that I suffered."

An attendee asked whether it would have been better if Luckett had been placed in a women's prison.

"You missed the point! What I was saying is that, because I was trans, I was targeted. . . . Neither of those would have sufficed because I didn't belong in either. People hear what they want to hear.

"I have poured my heart out and relived trauma and triggered myself all over again," Luckett said, "and it was sometimes all for nothing."

Listening does not entail simply sitting in a room while words are being said, waiting for an opportunity to insert one's own perspective; it's a practice of taking in and being open to being changed by what we've heard. It is difficult to listen when we are speaking, or waiting for our turn to speak, or expecting dialogue when it is not the time or place. Privilege can be a significant barrier to truly listening.

On the final evening of the training academy, about two-dozen attendees, many of them black or brown, gathered to hear and share updates on Michael Johnson's case. A soft-spoken, earnest white man living with HIV spoke several times during the meeting about his desire to help out and learn. He spoke of his belief that we are all the same. His comments were not acknowledged by those gathered in the circle, who instead remained focused on learning from others how to better advocate for the freedom of an incarcerated young, black, gay man. Emotional and visibly affronted, the man got up to exit the room.

"Don't leave," people in the circle, many of them black or brown, gently but firmly stated.

The message wasn't "stay and be punished." No one was interested in punishing this man.

The message that I heard and that I hope was received by the man was: "We see you. Stay and listen. Sit with your discomfort. Not always, but often, it is a sign of internal twisting, shifting. A sign of change. A sign of learning."

On Allyship and the Model of MIPA

In the HIV community, we have a built-in, venerated template for acknowledging and challenging privilege and for reversing the historic silencing of people experiencing oppression: MIPA, or meaningful involvement of people living with HIV.

People living with HIV experience oppression based on their HIV status. People living with HIV rightly demand to be listened to as subject matter experts on HIV and not to be told what their priorities or needs are by people who do not have that experience.

Token involvement in events and decision-making processes must not be tolerated, nor will being spoken for instead of to.

Likewise, people of color are the subject matter experts on racism. Trans people are the subject matter experts on trans experience. Immigrants are the subject matter experts on immigrant experience. Sex workers are the sex worker justice experts. And so on and so on.

Well-meaning allies to people living with HIV, and to other marginalized communities, must earn that label -- not by leading with their own learning process but by first asking questions ("How might my connection with this community serve its members? What might this community need that I can provide?") and seeking out answers from multiple outlets.

Allyship is a practice, not an end point. And when allies say or do something inappropriate to the community they seek to ally with, and they are told so, the proper response is to listen, learn and do it differently next time, not to become defensive or restate their good intentions.

For example: As a black queer woman, I experience racism, sexism and homophobia based on those aspects of my identity; I'm also quite privileged due to class, U.S. citizenship and cisgender experience, just to name a few. I am also a woman who is not living with HIV, and I am engaged in a practice of allyship with respect to communities of people living with HIV.

In moments when I "mess up" as an ally -- and these moments are part of that allyship practice -- sometimes I practically have to pull my tongue out of my mouth and sit on it to keep from misguidedly over-explaining my gaffe. Mostly that comes from being desperate for people that I respect and care for to know that I am on their side. But how effectively I am able to listen, learn and do things differently the next time are what lets people know I support them -- not telling them that I am an otherwise "good" person or that I meant no harm. I did harm. The question is, how can I do less harm going forward?

And when I am on the receiving end of defensive reactions from men, white people, heterosexuals and other people who benefit from forms of privilege that I do not, I know that their individual good intentions mean nothing in the face of systemic oppressions from which they benefit, just as mine do not.

The concept of intersectionality reminds us that many parts of a person's identity impact his or her life all at once in different ways and cannot be separated; a person can experience privilege based on one aspect (such as race or gender) and oppression based on another (such as HIV status). Whatever their experiences, potential allies must first listen in order to learn what being an ally looks like to the people they wish to support.

Listening as a Step Toward Justice

There are literally zillions of resources, from simple listicles to academic papers to organizations, conferences, books and public speakers, offering sound guidance and support on becoming aware of and addressing one's own privilege. In one of these, writer and diversity consultant Jamie Utt calls listening "the root of justice":

Listening is bearing witness to the testimonies, stories, emotions, and experiences being shared.

Listening is opening ourselves with the desire to learn and understand before we look for engagement, disagreement, or dialogue.

The reality is that in dominant culture in the United States, there are certain voices that are systematically silenced, ignored, and pushed to the margins.

In turn, the very act of bearing witness to these voices is radical and transformative.

Listening is not social transformation by itself, nor is it a single event: It is an essential step and an ongoing practice. Racism, patriarchy, ableism and so on are all systems and must be addressed by organizations on a systemic level, not merely acknowledged.

"I'm very interested in figuring out ways to evaluate these kinds of conversations," Stephens commented. "Are there best practices for dismantling racism within institutions? What do we know about lessons learned? What are the blueprints? We should ask ourselves more rigorous questions."

To leaders of HIV organizations looking to challenge privilege, Luckett suggested: "Your board must actually reflect the people who are impacted by the epidemic -- regardless of how uncomfortable it is. You just need that raw truth in your faces before you even come to places like [the training academy].

"And you have to come educated," she added. "I am always reading, and I'm always being informed about what's going on in different communities and how they're being impacted. I've learned so much about the Latina trans community from the Latina trans community."

Education is key, and while it is not the primary role of people of color or trans folks or sex workers or queer people or people living with HIV to be the teachers of white people, cisgender people, non-sex workers, heterosexuals, negative folks, etc., the fact that our identities have been historically silenced and marginalized does indicate that there's a big learning curve for those who have been taught to think that listening to us didn't matter.

Where to start in the HIV community? For Kari Hartel -- a member of the multiracial coalition led by women living with HIV that recently changed their state's HIV-specific laws -- it's helpful to create a container for these challenging conversations up front. "We continually assume that people in our community, people living with HIV, are enlightened about privilege, or trans identity or even sexuality, and they're not.

"A few ground rules or disclaimers [about whose voices or knowledge will be centered in a given discussion] -- or even an explanation at the beginning can oftentimes alleviate that. Then when you have those visceral, 'Oh my God, sit down!' responses [to audience comments], at least you laid out the ground work and it's not all of a sudden this thing coming up that they were completely unaware of."

Johnson put it plainly: "We need to give [people with privilege] an avenue to express themselves, whether that is: 'Here's a piece of paper and a pen. When we're talking, you can write down everything you want to write down that you would like to say.' Then we drop them in a hat and we pull some of them out and we discuss them."

"If the issue is that they're always talking, then don't have them talk," she said, "but give them another way of communicating about what might be going on with them."

On the New Life Stage of Our Community

One of the vital skills we cultivate in our organizations and advocacy coalitions has got to be deep listening across difference -- specifically, listening by people with privilege to historically marginalized voices. The invisibility and silencing that marginalization creates must be challenged at every turn; it will not just go away by itself. This deep listening practice directly combats the silencing and invisibility.

It is not easy.

Just as systems are not erased by the good intentions of individuals who benefit from them, systems cannot be dismantled by interpersonal conversations and bridges of understanding. But this is labor well suited to the extraordinarily diverse HIV community and those deeply committed to HIV work. Our task is to shift systems in countless ways by building power among marginalized groups and by organizing to demand changes to institutions, policies and practices that maintain the harmful, violent, stigmatizing status quo.

"We're becoming mature as a community," said Johnson. "In the beginning of the epidemic it was about staying alive. Then it moved to how are we going to get services, care, treatment. We were dealing with symptoms of a system that separates people.

"Now that we are living, we're now at the stage of, 'so how are we going to live together?' Now we are beginning to look at the system itself and that is making people uncomfortable.

"That's the dynamic that came into the conference, and that's where we are as a community: How far do we push?"

Olivia G. Ford is a contributing editor for and

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