Smithsonian National Museum of Natural History

End Stigma, End HIV: World AIDS Day 2021

Webinar – End Stigma, End HIV: World AIDS Day 2021
December 1, 2021

Sabrina Sholts:
Good evening. My name is Sabrina Sholts. I'm a biological anthropologist and a curator at the National Museum of Natural History at the Smithsonian and the curator of the Outbreak exhibit. I'm a blonde-haired woman wearing a blue v-neck sweater sitting in front of a rather cluttered background in my office at the museum in Washington DC. On the screen here in the Zoom is a photo of the AIDS Memorial Quilt of the NAMES Project Foundation displayed on the National Mall actually right outside our museum. This photo taken in 1987 along with the date and the title of today's event, End Stigma, End HIV. Thank you all so much for joining us. As people are still trickling in, I'm going to go through some standard housekeeping notes issues for those who are maybe new to our programs.

First, close captions are available by clicking the arrow next to the CC button at the bottom of the toolbar, that Zoom toolbar, either at the top or the bottom of your screen. We are going to open up for audience Q&A after our conversation with our panelists, but please feel free to submit your questions at any time in the Q&A box on the Zoom tool bar. The Q&A does go by very quickly. Trust me. So, please help us answer as many questions as possible by submitting your questions as soon as you have them. With that, I think we're going to go ahead and get started. For five years now, the Outbreak exhibit and associate programming has been educating the public about viruses that spill over from humans or two humans from other animals about pandemic threats of newly emerging diseases and how human animal and environmental health are all connected as one health. I'd like to take a moment here to say thank you to the many organizations that have supported the Outbreak exhibit including those that provided funding.

There are a number of epidemic and pandemic viruses that are featured in the Outbreak exhibit, including now SARS-CoV-2. HIV has been and remains at the center of it. Despite all of the people perspectives and experiences of HIV pandemic that we have tried to represent in the exhibit, there are far more stories than we have space to tell. That is why our programs like this one have been so important for expanding our ability to bring more voices and faces into the conversation. Today's conversation is our fifth annual program in commemoration of World AIDS Day as we all come together and raise awareness about the HIV pandemic and honor the millions of lives lost. After 40 years, since the first cases were reported in 1981, we are also here to recognize the work that still needs to be done in order to end the HIV pandemic at last.

Stigma continues to be a huge barrier to achieving that goal which is why it's the focus of the program this evening and why we are so grateful to be joined by our guests today. With that, I would like to introduce our moderator for this evenings program, Dr. Julio Cápo. Julio is a history professor and the deputy director of the Wolfsonian Public Humanities Lab at Florida International University in Miami. His first book, Welcome to Fairyland: Queer Miami Before 1940, received five awards. He is the curator of Queer Miami: A History of LGBTQ Communities as an exhibition, and a co-curator of the digital exhibition, Messages from a Pandemic: AIDS Graphic Communication. A former journalist, he regularly writes for mainstream publications, such as Time, Miami Herald, El Nuevo Día in Puerto Rico, and The Washington Post, where he also serves as an editor for its Made by History section. He has held fellowships at Yale University and the University of Sydney. Welcome, Julio.

Julio Cápo, Jr.:
Hi. Thank you so much, Sabrina. Thank you so much to the National Museum of Natural History for hosting this important conversation today. It is a great honor to be here with you all and with this distinguished panel which I'm about to introduce. I'm very, very excited for today's conversation. Today is World AIDS Day. Observed since 1988, as we all know, World AIDS Day raises awareness, knowledge, and support about HIV and AIDS worldwide reiterating the necessary messages that AIDS is not over, or as many activists on the ground have been saying for decades, that we are all living with AIDS. While the virus that causes AIDS certainly predates 1981, it was that very year, now four decades ago, that it first received national and international coverage and attention. It also resonates on so many other levels right now as we combat a number of other pandemics such as the novel coronavirus, of course, and anti-black violence. These are indeed interconnected issues and we all play a critical role in combating them for it is only through solidarity that we will, as today's presentation is titled, end the stigma and end HIV.

Today, more than 36 million people across the globe have died due to AIDS-related illness often because they lacked healthcare support or access to other lifesaving resources. Let's learn more about the important work being done on the ground to mitigate that. Let me introduce our distinguished panelist. Pastor Will Francis is lead practitioner of Lives and Souls Missional Church and founder and CEO of The HUB in Atlanta. He and his organizations focus on the social determinants of health and eliminating barriers for those in urban communities often underserved. Pastor Will was an ambassador and lead facilitator for The Black Church and HIV: Social Justice Imperative helping to train over 2100 faith leaders across the country. Pastor Will currently serves as an advisor for Gilead's Faith Coordinating Center at Wake Forest, and a board member for the National Black Leadership Commission on Health.

Dázon Dixon Diallo is an advocate in the struggle for human rights, sexual and reproductive justice, and the fight against HIV, with and on behalf of, communities of women and girls living with HIV and those affected by HIV and STI transmissions. Dázon is founder and president of SisterLove, Inc., established in 1989, the first women's HIV sexual and reproductive justice organization in the southeastern United States. Dr. Diallo holds a master's degree in public health from the University of Alabama at Birmingham and a bachelor's degree from Spelman College in Atlanta. In 2012, Dr. Diallo had the distinct honor to receive an honorary Doctorate of Humane Letters from her alma mater, Spelman College. I should note very much a reflection of the incredible work that she's doing. She's joining us live from Durban, South Africa, where we might have some issues seeing her on video, but we'll always have her audio, so thank you.

Kellan Baker, the executive director of the Whitman-Walker Institute, which is the research policy and education arm of Whitman-Walker, a federally qualified community health center in Washington DC. Kellan was a consultant on the National Academies of Sciences, Engineering and Medicine on a major 2020 report on the wellbeing of LGBTQI+ populations, and is currently an appointed member of the National Academies Committee charged with developing standard for the collection of sex, gender, and sexual orientation data for the National Institutes of Health. He holds a PhD in Health Policy and Management from the Johns Hopkins School of Public Health, an MPH and MA from the George Washington University, and a BA with High Honors from Swarthmore College. With that, please welcome this distinguished group of folks doing incredible work today. Thanks for joining us. My first question is for all of you. Let's hear a little bit about your organizations and the communities you serve. Why don't we start with you, Will?

William Francis:
Sure. First, I want to thank the organizers as well as our moderator and the panelists for this opportunity, but again, Will Francis out of Atlanta, Georgia. The HUB has been doing some work in this space now since about 2010. We have really found our niche, if you would, serving those what we call lost, last, least, left over, left out, and left behind in underserved areas. Not only they underserved areas but also undervalued. We do a lot of work with homeless, those that participate in sex work as well as substance, and extreme poverty, and hunger. We have sort of just landed there and The HUB does most of what we call the sedalic work there and then also pastor over church. I think we're probably one of the only churches that does condom distribution on Sunday as well as clean needle exchange as well.

Julio Cápo, Jr.:
Thanks so much, Will.

William Francis:
Yeah.

Julio Cápo, Jr.:
Dázon?

Dázon Dixon Diallo:
Thank you so very much, Julio. It's exciting to be here with everybody. I am happy to tell you the story of SisterLove in 30 seconds or less. 32 and a half year old sexual and reproductive justice organization that has worked at those intersections since the beginning. I think that's an important factor to raise because our primary population or people of concern are women and girls in all of our diversity, so that's women, fems, girls, transgender women, gender non-binary folks, folks who were assigned female at birth, trans masculine as well. The work that we've done has been an intersectional journey by locating HIV inside the human right framework, inside the sexual reproductive health rights and justice framework as well as addressing rape justice, and in a lot of ways, economic justice.

We provide an array of programs and services that are intersectional and interdependent, so direct services, health education, testing, counseling, linkage to care support as well as engagement from civic standpoint for our clients, leadership work with young people and LGBTQ youth and women living with HIV, all diversities. We have a very robust community research program where we are asking and answering our questions with our academic partners as our support teams [inaudible 00:12:11] the other way when we're doing community-led research. We also are very much involved specifically with adolescent girls and young women where we work in South Africa because that is a population of incredible concern in not just South Africa but in Sub-Saharan Africa. We do a lot of innovative work so we have an organization that I am proud to say we are who we serve, and that means that people's lived experiences or what I call their indigenous expertise are the data that drive what we do.

Julio Cápo, Jr.:
That's beautiful. Thank you so much, Dázon. Kellan, can you tell us about your organization and the communities you serve?

Kellan Baker:
Sure. Thank you, Julio, for the opportunity to be here, and the organizers. Very honored to be with you all this evening, Will and Dázon, in particular. My name is Kellan Baker and the executive director of the Whitman-Walker Institute. It is part of Whitman-Walker which is a federally qualified community health center that has over 45 years of experience serving people across the DC metro region. We started in 1973 as an STI clinic, and after a decade of work, became very clear what the needs were here in Washington DC and the surrounding area, and so we have been at the front lines of the response to HIV in the DC area ever since. The institute was founded in order to make it possible for more research to happen here to understand the needs of our patient population, and then also to share the learning about how to serve folks living with HIV, at risk of HIV in all different kinds of settings.

This is an effort to make sure that we're not only providing the frontline care but also connecting folks outside of our immediate circle with information about how to provide this care and how to make sure that we are really drivers of wellness in all of the different communities that we are a part of. In terms of our patient population, Whitman-Walker has about 20,000 patients. We are about half from DC and half from the surrounding area. About a third of our patients are black or African- American, about 20% are Hispanic, and contrary to, I think there's sort of a popular perspective or thought out there which I think relates to some of the conversations about stigma that we'll be having, that we are exclusively an LGBT clinic. Actually, about a third of our patients are straight, a third identifies lesbian or gay, and about a third are bisexual, and about 20% of our patient population is transgender.

As a primary point of care for people living with HIV in the DC area, the DC metro region has some of the highest rates of HIV in the United States, and that is a direct consequence of historical legacies, of redlining, of structural oppression, of racism, and of homophobia and transphobia. We have about 20% of our patients are HIV positive and about a quarter of the people living with HIV in DC get their care at Whitman-Walker. We are, first and foremost, a clinic. We are a place where people can come to get care and services, not just for HIV, but for all different kinds of health conditions, preventive care, legal services, help navigating the social determinants of health, if you will. We are also a place where we are trying to do more of the research policy and dissemination work that can help, not just Whitman-Walker serve our patients and our communities better, but help other organizations and clinics across the country do the same.

Julio Cápo, Jr.:
Thanks so much for that, Kellan. It's in some ways is you anticipated my next question which is so great. All three of you alluded to forms of disinformation or myths that have to be kind of broken out of. That is the kind of preconceived notions of what HIV is, who's at risk for HIV, and in many ways, it anticipates the idea of stigma. For my next question for all of you, if you can tell us a little bit about how the ways that the people you serve experience stigma. What does that look like on the ground and ways that we can kind of go around to combat that? If we can start with you, Dázon.

Dázon Dixon Diallo:
Sure, and thanks for the question. I first have, and I'm sure we'll get into this even a little bit more, I have a bit of a different take because I have a need for us to unpack stigma, so we can talk about that in a minute. But for the most part, I think because of we are serving predominantly women and women of African descent, black women in particular, and I think mainly the first and I think the most powerful and unfortunate stigma is the internalized stigma that happens for people when they're diagnosed with HIV especially black women in particular who live in a constant state of concern about how we wear our hair, how we cover our hair, how we talk, who we have sex with, how we get married, how we raise our children. All of that is already stigmatized.

I think ongoing [poor connection 00:18:12] of 400 years of stigma, subjugation, dehumanization about sexual activity, sexual behavior, sexual identity, sexual pleasure even when you are dealing with people who are still fairly ignorant about HIV that turns inside before because now, I am a vector. Now, I am someone who causes problems as opposed to solving problems which is where women are supposed to find our niche, our sweet spot. That's the first one, I think, is really powerful because it comes wrapped in shame. It comes wrapped in racism. It comes wrapped in vulnerabilities that we don't even know about because we might not even be asking the questions. I think there are other stigmas that are associated with that but [inaudible 00:19:12] that-

Julio Cápo, Jr.:
You're cutting off. Sorry.

Dázon Dixon Diallo:
... Will and Kellan... Sorry, can you hear me now? Is that a little better?

Julio Cápo, Jr.:
Yeah. Maybe just turn off your video so we could just hear you. I think that would work better with the bandwidth, but otherwise we're good. Perfect. Thank you.

Dázon Dixon Diallo:
Let's try that because [inaudible 00:19:33] videos on one thing and I'm on the other, but let me just finish by saying that I think at the end of the day, there is an HIV stigma but that comes wrapped with so much. The real stigma around this epidemic is sex. It is sex, it is sexuality, it is sex connected to other behaviors or other activities and other systems that impact people for whom their human rights are least protected, and that makes it easy to attack. Stigma comes when people have the power and the privilege to prefer others over someone else. It's the other ring of people living with HIV that ends up in stigma, and so it turns out [inaudible 00:20:20] drive implicit bias. It turns out to drive whether people are going to be adherent because of how they're treated or how they're accepted or how they are actually [inaudible 00:20:33] viewed.

Julio Cápo, Jr.:
Dázon, I think we lost you there.

Dázon Dixon Diallo:
I think there's actually a [inaudible 00:20:45] that comes along with as having a sickness and illness much less something that... I'm going to stop the power of stigma. It starts from within but it is certainly an external pressure that changes or affects how people engage for the [inaudible 00:21:14] half of themselves.

Julio Cápo, Jr.:
Dázon, unfortunately, I think we lost the last second there, the last few seconds there, but the message you conveyed is loud and clear. The internalization, which of course, is never internal, just also from external forces. Thank you so much for that, Dázon. Sorry about the connection. Again, as a reflection of the incredible work that Dázon is doing, she comes to us live from Durban, South Africa, so thank you. Kellan, your take.

Kellan Baker:
Yeah, there are many manifestations of stigma. Unfortunately, it's a multi-headed, multi-faced, multi-faceted beast, but regardless of what form it takes, Dázon, I really appreciated your framing, is it all comes wrapped in racism. It all comes wrapped in the ways in which, we, as a society have developed norms, policies, laws that decided whose lives matter and whose don't. Regardless of the form that it takes, stigma kills. It's not just an abstract, "Oh, well we don't like XYZ person or group or community," or what have you. It is literally a way in which these societal forces such as racism, such as homophobia or transphobia, literally kill people by exposing them to violence, by exposing them to HIV which now is more of a chronic disease than ever before but still is difficult to manage and has killed more than 36 million people around the world.

I think it's also really important when we're thinking about stigma. We tend to just use the word stigma which sounds like maybe something that happens between two people. Maybe I turn my face away or I decide not to talk to someone, but think the most dangerous and I think the form of stigma that we really need to be talking more about is structural stigma, meaning the ways in which these interpersonal attitudes, beliefs, societal norms, what have you are embedded in the systems that are determining people's opportunities, people's safety, people's access to healthcare, et cetera. The field of structural stigma really has its roots in the HIV epidemic and trying to understand what made some groups of people so disproportionately burden carrying the HIV epidemic. If you look at it, there are sort of three ways that structural stigma works.

One is domination and exploitation. Keeping people down, keeping people in poverty, keeping people away from the services that they need. Norm enforcement. Keeping people in, saying, "Oh, well, you can't be one of those people. You can't live your life like that. You have to follow a certain prescribed set of societal norms or else you'll deserve what happens to you." Finally, exclusion. Keeping people away, keeping people from accessing, again, the services and supports that they need. All of these are intimately connected with power. There's no way to talk about structural stigma without talking about power because it is the exercise of that societal power of determining who matters and who doesn't, who's going to get services and who doesn't, who is at risk of HIV and why. So, I think it's really, really important, as we're talking about stigma, to keep pulling the camera back to looking at structural stigma, how have we set up society in such a way that we are perpetuating the same burdens on the same groups of people over and over and over.

Julio Cápo, Jr.:
Thanks so much for that, Kellan. It resonates too very much so with the things that Dázon said, right? Thinking about the power structures, the way you articulated that stigma kills, and these kind of layered ways in which that... Thank you for that. Will, let's...

William Francis:
My answer's really ditto. I mean, starting with what Dázon said about internalized and self stigma, right? Then Kellan's just use of the isms, all the isms that you can come up with. We see it manifested on a ground level as trauma, and it's trauma after trauma after trauma after trauma, which really makes, and I'll never say impossible, it makes very hard to create a healing centered environment when you're experiencing so much trauma. Mom has been traumatized, the kids have been traumatized. We currently have a hotel housing program for those that were evicted. We have 137 people in hotels and it is just every day layers and layers of layers. We can't even get to what we need to get to in order to move them into adequate housing without dealing with the other stuff that has gone on for generations.

I think both of those answers, I couldn't answer it any better. I'm not going to step here and try to. That's the only way that we're going to end stigma is by having those real conversations in community and everyone really has to be around the table to have those conversations because it's coming from the community, it's coming from the healthcare systems, the HIV community at large, political, educational, all of that. It just comes from so many different areas.

Julio Cápo, Jr.:
Thanks so much for that, Will. To think about exactly in community, the way that this has to happen, not in isolation, but of course, very much in conversation with a number of different entities and organizations and folks across all parts of life. If I can, Will, I'm going to stick with you for the moment.

William Francis:
Sure.

Julio Cápo, Jr.:
As you're working with pastors, one of the questions that we were thinking about is framing here is to ask you whether you've ever encountered a form of resistance in some ways to the idea that the church should be supporting people at risk for and living with HIV. If so, where does that kind of resistance come from? Is it misconceptions about who's at risk, perhaps perceived morality conflicts? How do you overcome that resistance and work to convince church leaders that they need to be doing this work? What's the role of all this?

William Francis:
It became very frustrating. When I first started out working with Black Church and HIV: Social Justice Initiative, I was able to travel around the country and talk to faith leaders. Truth be told, many of those faith leaders that had come together for this conversation wound up leaving the room because they didn't want to face the elephant in the room, and it was really their own ignorance biblically as well as just general knowledge of what really goes on in the HIV community. You had a lot of myths that you talked about. I thought it didn't exist anymore or, "Oh, didn't Magic Johnson used to have that type stuff?", or it became a gay disease again. Those conversations, I just don't take part in. Once those folks left, there was really a heart to do the work, but it was always how do we do the work because we also had to get over the stigma and the pain that we've caused as faith leaders in messaging in the way that we've taught scriptures incorrectly different things at nature.

It wound up being very rewarding at the end of the project. I think there was a lot more that we could have done, lot more that partners that could have been bought in, collaborations that were made. That's why I was glad that after the initial contract was up that Gilead did look to continue that through Wake Forest and the faith coordinating centers. Now, we have large churches, megachurches of what we call here in the south to micro churches, churches like mine that are under 50 members or whatever that is really doing work, not only just HIV testing, but the linkage to care, doing a pastoral care and counseling using a grief counseling model. There's been a lot that has come out especially here in the south but across the country, and we're hoping that what we're doing through Gilead, Wake Forest that that really becomes a model that churches can then pick up and then teach just like they would any other Bible study.

Julio Cápo, Jr.:
Thanks so much for that, Will. It's empowering and such a source of inspiration to hear, and to people across all faiths, to hear the persistence in which we all work together to bust these myths and to do the important work, so thank you for the great work you do.

William Francis:
I noticed you had Dr. King in the background so we do a lot of framework around a lot of his principles and a lot of the pastors. Okay, they get that, so they're starting to understand HIV as a social justice issue.

Julio Cápo, Jr.:
Absolutely. Thank you for that. As a reminder to our viewers, by the way, at any time, you can please leave a question for any one of our panelists. They could be posed to all. If you want to ask someone specifically a question, be sure to identify that in your question, and we'll get to them and try to get to them as many as we can by the end of tonight's program. Kellan... Actually, Dázon, I know we were having some audio troubles, but are you back with us or you're still there?

Dázon Dixon Diallo:
Yeah. It might sound a little different but do I sound better?

Julio Cápo, Jr.:
You sound perfect.

Dázon Dixon Diallo:
Oh, perfect. I usually just aim for excellent so that's awesome.

Julio Cápo, Jr.::
Dázon, SisterLove operates in Atlanta, Georgia, and you have, of course, SisterLove International based in South Africa where you are right now. Can you tell us a little bit about how you got started in South Africa and in what ways the work you do there is different from the work or perhaps the same from the work you do in Atlanta? Are there notable similarities in the needs of women and girls in these two locations and people across gender? What does that look like?

Dázon Dixon Diallo:
Yeah, absolutely. When we got started back in the mid '80s and we knew from the get go, that's the word where I come from, we knew from the get go that AIDS at that time, and then of course HIV, were real issues of sexual and reproductive health. Not only a communicable disease that was a sexually transmitted infection but that it had absolute impact on women's destinies around their sexual and reproductive health and their rights, and there wasn't anything that we could see or look at in the United States that mirrored what we were trying to do that we could learn from. Where that work existed was in the international space and it just so happened that the timing of bringing women together from around the world to talk about reproductive health challenges that were really just starting in the late '70s, early '80s.

So, by the time we get into that global arena like at the Cairo Conference in Egypt in 1994, the International Conference on Population and Development where they created the first ever global agreement program or plan of action on how to address sexual and reproductive health and rights for women and girls around the world, and did not include anything around the HIV epidemic at that time. I met a most incredible young woman who was one of the first black women to disclose her HIV status or to tell her HIV status. I want us to move away from using this word disclose and disclosure. We can talk about that too. Tell her story in public, and she was 21 at the time, started what I think is the first Positive Women's Network in the world for women in South Africa, and she had the same frustrations.

We've just promised that one day, someday, this was way before internet and WiFi calling and all of that, so there was very little opportunity for communication in between, when we got a grant opportunity to twin the work that we were doing and share resources and share training, and share our programs and learn from each other. That's how we ended up in South Africa is because we fell in love with each other as organizations, made a promise to each other to work together, and we are still working with the Positive Women's Network to this day. What drove us in that direction though, I would say personally, I was a part of the Anti-Apartheid Movement on my college campus from day one when I arrived at the HBCU that I went to school at Spelman.

So I had this personal connection coming from the deep south so the similarities that once we started doing this work, we're finding that when you're trying to address a population of people like black women, whether in South Africa or in the US southern region, and you're still working in the face or in the recent throws of apartheid or segregation, Jim Crow, civil rights movement, people's rights, human rights, all of that, there are stories that we can find common ground even before we start talking about HIV. Discrimination, the reality of being black and female, raising children that we were worried if they would survive because of the state violence that was perpetuated against them. Those were some of the common issues along with gender inequity and inequality and pay inequality and gender-based violence.

We found all of those things, what was distinctively different, and that's where we start to learn from each other, is that because of the way that South Africa brought apartheid to its needs was, one, it was economical, but two, it was the sheer massive movement of the people that also brought apartheid to it. We, as southern genteel people, we engage and we activate in a different kind of way, right? So, we had to learn, even as I was a part of ACT UP, as a community, we had to learn different ways of how to express our anger, our demands, our frustrations, and that actually helped portend the fight that we had here in the US. The other thing that I would say is that, in South Africa, we have probably still the most progressive constitution on the planet and the that's because it's one of the newest constitutions on the planet and they chose to integrate the human rights framework into the constitution. But the protections for women, for children, for LGBTQ people, while those are laws that are on the books meant to protect them, in society, that is not the case.

In the US, we have a constitution that never was written to include us, that never intended for black men or women or children to have an equal status with the majority at that time or indigenous people, but we have probably still one of the most robust and still moving although we're losing ground democracies in the world. I think that those distinctions give us an opportunity to have really important conversations about where our solidarity lives. That's where we're doing our work is really honing in, and that's why I'm here for women now, because we're honing in for black women everywhere. Yeah, we're in South Africa, but I don't care where you go on this planet. If there are black women in that country and they don't have to be African or black American, they could be darker hue, they could come from a cast that is classified in the same way that black people might be classified as second class citizens in other places.

The bottom line is no matter where you go, where people are cast or classed as less than because of the color of their skin, we suffer the disparity of HIV no matter what our representation of the population is. If we don't get a handle on why that is everywhere, we will never end the epidemic. So, when you talk about stigma, when you talk about what's common and what's different for us, what's common is that white supremacy has its grips systemically woven throughout the world, not just in the west, not just in the north, not just in the places where majorities have had rule like during colonialism or imperialism or any of those times and things, it is still here, it is with us. For black women at the bottom of the rung of oppression, that's where we find the power to build our solidarity, to address some of these core issues.

So, gender-based violence, equity, gender equality, leadership, recognizing our contributions, valuing our contributions, all of those. I haven't talked about HIV for the last four or five minutes, but they are all directly connected to how well or how not well an individual or a community is going to be able to have the power and the agency to solve their own solutions or bring their own solutions and solve their own problems the way they need to because others get to dictate what is and isn't. That's what we've had to change for women and girls is that we have to dictate for ourselves what is and what isn't, and claim that space and claim that power to do it because ain't nobody giving it to us.

Julio Cápo, Jr.:
Thank you so much for that, Dázon. I took scrupulous notes and my paper looks like a mess just because you gave us so much goodness there. Thank you for the especially the kind of portrayal, the necessity to put black women as perspective and modes at the center at the forefront for liberation for all. This is so much that you gave us so much to think about in that perspective.

Dázon Dixon Diallo:
Yeah. I would go along with what Reverend Will is talking about, and people can be uncomfortable with this and I think they should be because anybody who's comfortable with this epidemic, they're not trying to change anything. They're quite fine. I think what we have to really be truthful, honest, transparent, and accepting of is that the end of this epidemic comes with centering blackness. When you begin to center on all of the things that impact black people and then brown people, you also begin to address those core issues that impact black and brown disparities with regard to HIV.

Julio Cápo, Jr.:
Absolutely. Thank you. By the way, your audio is perfect.

William Francis:
Perfect. Yes. You sounded good. Everything.

Julio Cápo, Jr.:
Perfectly.

Dázon Dixon Diallo:
Thank you. We keep working on it.

Julio Cápo, Jr.:
Kellan, Whitman-Walker Health has operated as a clinic since 1973 and you're the executive director for the Whitman-Walker Institute, of course, a kind of new so to speak entity in that way that has a research and education focus. Tell us a little bit about why it's so important to do the research and education work in addition to providing direct care through the clinic. We've heard a little bit about this already, but to kind of put this in context.

Kellan Baker:
Yeah. It's impossible to follow Reverend Will and Dr. Diallo, but I will do my best because really why Whitman-Walker exists as a clinic and then why we have an institute really falls in line with exactly what they were saying which is, for example, Whitman-Walker is a clinic because we had to take care of ourselves, we had to do for ourselves what the government was not doing, what major mainstream healthcare organizations weren't doing. No one wanted to work with people living with HIV. It was very easy to use racism. It was very easy to use transphobia, homophobia to just say, "That's not my problem. I don't see those people as deserving of care and treatment," and so that's where clinics like Whitman-Walker came from. There are historically a number of clinics around the country that have their roots in serving people, living with HIV when the government mainstream medicine was not doing so.

With regard to why it's so important that we do research and policy in addition to directly providing care is, again, needing to be the ones who are coming up with both the full scope of what the problem is and then also coming up with the solutions because it's impossible for some external outside entities to look at our communities, understand what we're going through, and then come up with solutions to the HIV epidemic or to HIV risk more broadly. It really comes from our own communities. That's where the expertise lives. The work of the institute, the work of Whitman-Walker as a whole is to nurture both community health and that community expertise, and to share it and to let people, whether it's government, local government, state government, national government, let those entities know that our communities need resources, need access to the platforms where we can tell our stories and say what it is that we need and get those needs filled.

With regard to what I was talking about around structural stigma, for instance, and the policy work that we do, there are still laws in 35 different US states that criminalize the transmission of HIV. These laws come from days when we didn't know that much in many cases about how HIV was spread so they're impossibly outdated. Also, they take advantage of the very forces that we've been talking about, the idea that people are not people but they are vectors of disease and they need to be controlled, they need to be stamped out, they need to be kept away. So, doing work like policy engagement to get these laws off the books and to ensure that these real manifestations of stigma... I mean, HIV criminalization laws are structural stigma on its face. They are very clearly such an example of that.

For Whitman-Walker, we think that it's really critical to be engaged in the work of trying to get rid of some of those manifestations of stigma so that people are not afraid to come to the clinic. They're not afraid to find out their status. They're not afraid to seek out prevention. They're not afraid to seek out care. If they are diagnosed with HIV, they feel like they can tell other people and get the support and care that they need. HIV criminalization and all of these other manifestations of structural stigma really try to stand between people and the care that they need, the love that they need, the community that they need. So, it is our job not just to provide care for the individual, to make sure that when they do come through the door that they can get access to the prevention or the treatment that they need, but to be out there fighting upstream to try to make it possible for folks not to need to have to come to the clinic for HIV services in the first place.

Julio Cápo, Jr.:
Thanks for that. Also, thank you especially for bringing up the criminalization laws. There's so much... Thank you all to all three of you for answering these questions. Before we shift attention to audience questions, just want to say how incredibly necessary and important it is to have this kind of programming. We could have these conversations for hours and hours and hours which only means we need to have more of them. That is the necessity of doing this work. Thank you for the great work that you all are doing. We have a question from Lada that's posed to all the panelists as whomever would like to take it amongst you. The question is are there any indicators that you have seen working in this space over the years that we are making progress and dismantling stigma and some of these underlying issues that have been mentioned? Have you seen positive progress over the years? Who wants to take it?

William Francis:
I say yes and no. I think we've made progress in some areas and we've gone backwards in other areas because I know when I first got engaged in the work in 2009, we were having a conversation about criminalization. I'm sure it existed long before that, but I can go back to 2009 and we're still having the conversation and it doesn't seem that we're moving any closer, so I think in some areas, I think we've made some advancements. In other areas, I think we have stalled, and some, we have moved back.

Julio Cápo, Jr.:
Kellan and Dázon, do you want to take a brief stab?

Kellan Baker:
Yeah. I would really agree with the mixed bag because on the one hand, yes, we do have more people entering treatment for HIV, we have more people, we have messages such as Undetectable = Untransmittable, right? So, people who are on pre-exposure prophylaxis or who are on HIV treatment medications, it's that empowering sense of you're not defined by either your risk or living with HIV. That I think has gone in a significant degree towards getting away from this message of people as passive victims of HIV and the idea that we are vectors of disease, but at the same time, Julio, you noted in your introduction that we're living through these overlapping epidemics of anti-black racism and violence, police brutality, COVID. If you look at a map of DC, and I think this is probably pretty true for pretty much any major US city, the map of where residential segregation and redlining was where segregation persists, where COVID is the highest, that's exactly the same places where HIV is the highest.

We're all, as Dr. Diallo mentioned, sex... Stigma around sex is really at the heart of a lot of stigma against HIV, but you can, if you look at the ways that these epidemics overlap, it's clearly, I mean sex shouldn't be stigmatized in the first place, but if you want to just talk about the mechanics of what's going on here, it's clearly not behavior. It's clearly the ways in which people are being targeted by these structures within which we live our lives and systematically deprived of rights, dignity, access to healthcare, the ability to live our lives safely even to walk down the street, to go to school, to get access to medical care. I just think, for better or for worse, these epidemics that we are living through now are really an illustration of the ways in which we cannot turn our backs on any of this discussion about HIV, about stigma, about racism, because these things feed off of each other, and so we are seeing right now some very scary indicators of where this country is going on a lot of those.

These overlapping epidemics, they clearly show how persistent and pervasive the problems continue to be, and so it means that we haven't put enough... There needs to be real investment from the government. There needs to be real acknowledgement by white people of what white supremacy is and what our role in dismantling it is. This is not... We were talking about our communities have had to do it for ourselves, right? It's time for all of us to get on board with the fact that sexism is real, racism is real, homophobia and transphobia are killing people, and we can see it in the numbers around COVID, we can see it in HIV, and it is more imperative now than ever for everyone to be seeing our own role in helping dismantle these structures.

Julio Cápo, Jr.:
Thanks so much for that comment. Okay, go ahead. Actually, Dázon, if I may, if I can just reframe that so it kind of suits the next question which I think is you've touched upon already a little part, so I think you could elaborate here. Our next question was about the lessons we've learned. All three of you anticipated it, no doubt, from the HIV pandemic that would help us in the COVID-19 pandemic. So, if you want to touch upon what you were talking about earlier but also thinking about this moment of COVID-19 and these overlapping pandemics.

Dázon Dixon Diallo:
Sure, absolutely. Well, the first thing I think, which is super important, what both Kellan and William have said, and that is we have this tendency... Actually, I've written about this a little bit, and I talked about how with HIV and now with COVID-19, if we would all learn from it, we're sort of sitting in this Sankofa Paradox, right? What I mean by the Sankofa Paradox, so the Sankofa symbol from the Adinkra people in West Africa, predominantly Ghana means, or the Akan people, the Adinkra symbol of the Sankofa is a bird that's facing backwards, body is facing forward, head is facing backwards, egg on the back as if they're protecting the egg in their beak. Essentially Sankofa says we have to know where we've been and learn lessons from that in order to know where we're going, and that egg in and of itself sort of connects our past to our present to give us the context.

What I mean by that is we're sitting here talking about HIV 40 years in. Stigma was real in 1981. It was real when we tried to include women in the CDC definition in 1994. It was real when we had disparate distribution of highly active antiretrovirals which is why we had a revolution in 2000 to make sure that pharmaceuticals were being more just in their sharing of patents and compulsory licensing was an issue. That is absolutely reminiscent of what we're dealing with right now with the disparate distribution of the COVID-19 vaccines across... I mean, vaccines to affect one disease, and there's like 12 different kinds that could be accessible, and we still have really, really low, not uptake, low distribution on the continent. What we have to do is think future, live present, not think past. Learn from the past but think for the future.

What the future of ending HIV looks like is, and this is how you in stigma too, is when you begin centering it in the lived experiences of the people who suffer. Ayanna Pressley says, that's the Congresswoman from Massachusetts, says the people who are closest to the pain must be the people closest to the power. That's Paulo Freire, that's Nelson Mandela, that's Martin Luther King. You name anybody who is about human rights and social justice, they understand that it has to start with the people, not the prophet, not the politics, not the politician. That a human rights based approach which understands how we dismantle the systems that drive the epidemic, that drive farmers to exclude populations from research, that drive local governments to start passing policies and laws that further criminalize black and brown bodies, that if we don't embrace, for example, the role and the value that community plays and contributes, that the lived experience is data in our science, that indigenous expertise.

We got people who have better ideas of how to cope with HIV, how to manage HIV, but nobody ever asks them how they do what they do so they're accused of being non-adherent, but somehow they're suppressed, right? There are all kinds of things in our future centering sexual health and wellbeing and pleasure instead of talking about risk. We have got to move away from burdening people with being able or being forced to assess their sexual lives as risk. That's not how people engage in their relationships, and it's not how they get out of them even when there's violence. So, we have to understand the risk of the public health imperative. It is not the human imperative. The human imperative is to have quality of life. So, how are we shifting the paradigm to talk with people about how they want their sexual health and wellbeing to have best outcomes, and then offer the best tools that we have in our big ass toolbox to respond to that? Then how, at the end of the day, do we elevate what community engagement looks like?

The first thing is you take it out of the institutions, you take it out of the academies, you take it out of the research, and you put it in community where it belongs, and you follow that with the resources and the respect for the intelligence and the information and the results that come from community. Just because it wasn't some 30,000 person phase three trial that is supposed to be generalized, doesn't mean that a community of people couldn't come up with something for their own community and deserve respect and resources for that. We could go on but I would come back the one thing I wanted to up in is I think of stigma as a Trojan horse. We got to bust open the Trojan horse and deal really head on with all of those things that both Kellan and Will and I have talked about that actually are stigma.

Stigma is a lazy way of saying we got racism, that we would rather deal with individual behaviors than deal with systemic discrimination and exploitation. Lastly, I want us to stop talking about social determinants of health and deal really honestly with determinants of health and equity. What I mean by that is that you have some determinants that people are identifying as social. They're not social. Social means you can change something because it's based on a culture, it's based on a movement, it can change a social determinant, but I'm born with a certain amount of melanin. That is fixed. You can't change that so my race is not a social determinant of health. It's a fixed determinant of health. How are you going to address that differently? Or you can pass laws and policies like restricting abortion access to the point where people have to travel five, six, 700 miles and take four and five days off of work to have access so that they are not forced into motherhood, right? That you can pass policies that also create health and inequity. That's not social. That's political.

I want us to talk about these determinants in a different way, that they are built around inequality and inequity, and that there are ways to deal with the political, there are ways to deal with the social, and there are ways to deal with those fixed determinants that we have not yet touched, and that's across the board with research, treatment prevention. Even in our advocacy circles, we're still fighting right supremacy and implicit bias with our own allies and comrades. We have work to do that goes beyond the biomedical response which is important and critical and absolutely necessary, but it is not the end all be all. I think that that has to be the other important message. What works, works, but what isn't working is what we're most afraid to address. As long as we're afraid to address it, we will be fighting this epidemic. Period.

William Francis:
Hey, Dázon, none of that is going to look good on a t-shirt though. Right?

Dázon Dixon Diallo:
You know what? I hear you. I need more than a t-shirt because [crosstalk 00:59:36].

Kellan Baker:
A mural.

William Francis:
Right.

Dázon Dixon Diallo:
We just put it in a whole bunch of pocket.

William Francis:
Yeah. End stigma was cute. That's why I've made the t-shirt, but you just hit them heavy. You hit them heavy.

Dázon Dixon Diallo:
Yeah. No, I got my favorite. One of my favorite creations who [inaudible 00:59:55] with this is I have a t-shirt that I created years ago for, I think, the AIDS 2006 conference, where on the front... You remember that Got Milk ad that they used to have? I have got justice on the front of the shirt, and on the back, there's a list of all of the injustices that need to be fixed. It's all alphabetical, so you pick it, you name it, and it's on my shirt. So, I could do that t-shirt for you, Will.

William Francis:
Yeah.

Dázon Dixon Diallo:
It's a long list on the back.

Julio Cápo, Jr.:
Beautifully said, Dázon. Thank you so much. It pains me so much to say this because I want to have this conversation for 10 more hours at least. We have time for one more question from the audience, and Will, it's for you. If we could briefly just... Another viewer wants to know how do we make people realize this notion we've been talking about in a number of different ways that we are all living with HIV and shake the complacency that that persists?

William Francis:
I have just always sort of just taught that we just got to need to focus on one's commonality and just stay away from the differences because we can go on and on and on about differences, this, that, and the other, but if we just find commonality, that one thing that we have in common or whatever, and just join around that, I think we would just be in a very different place. I've been doing this not as long as some, but there was more conversation about the differences and the different groups, and this community, LBGT community, the faith community. We're one community. I got everything in my family. You name it, I got it in my family. We are one family. I just think that that commonality piece just has to resonate with us all and stop worrying about who gets top billing.

Julio Cápo, Jr.:
Right.

William Francis:
Let's move forward. Kellan said when we're talking about COVID, COVID became its own structure. In my own opinion, and Dázon please correct me if from wrong, because HIV prevention shut down in Atlanta because everybody started focusing on COVID testing and we lost 50% of our workforce said to COVID, right? So, all of the prevention, oh and the epidemic, all the meetings, this, that, and the other, that all shut down and COVID, COVID, COVID, COVID, COVID. I think that became its own structure but I also felt that, well, it shows you what can be done if there is willpower combined with way power. I know we're not there yet, but we moved awful quick on COVID and really slow to get stuff done around HIV, so I just wanted to come back with that, with what Kellan said earlier about the structural stuff.

Julio Cápo, Jr.:
Thank you to all three of you for this incredibly generative, incredibly powerful... My heart and my soul feels very full. You've given us a roadmap in many ways to think about the steps forward. I think that this is... One of the things that kept on coming up is that we're not reinventing the wheel. The knowledge has been here. The knowledge is listen, right? Thank you for the incredible work you all do. Nothing but gratitude and appreciation for the work you all do. Dare I even say there's optimism and hope. That is I feel this conversation has made me feel in that way, so thank you. That's all the time we have for today.

To our audience, please join me in thanking today's distinguished speakers, Pastor Will Francis, Dázon Dixon Diallo, and Kellan Baker. This has been a true, true pleasure. Outbreak webinars will continue into the new year, so please check back on the museum's website for details about upcoming evening programs. Just a little note that you'll also see a link to a survey. We'll hope that you'll take a moment to respond to it. We're interested in your input. It helps us get better. It helps us respond to your needs and your issues. Thanks again and I hope to see you all next time. Take care.

Archived Webinar

This Zoom webinar with Kellan Baker, Dázon Dixon Diallo, and Pastor William Francis aired December 1, 2021, as part of the "Outbreak: Epidemics in a Connected World" series. Watch a recording in the player above.

Description

America is 40 years into the AIDS epidemic, and although the development of effective treatment has the potential to end the spread of HIV, progress is impeded by persistent stigma and discrimination. Reinforced false ideas of who is at risk and discouragement from seeking treatment keep the epidemic going. Activists and grassroots organizations, historically and today, have stepped up to educate the public, fill the void of care in their communities, and work to overcome stigma surrounding HIV and AIDS. 

During this World AIDS Day program, hear from those working tirelessly to eliminate stigma and listen in on a conversation on how to make AIDS a pandemic of the past. 

Speakers:

  • Kellan Baker, Executive Director, Whitman-Walker Institute
  • Dázon Dixon Diallo, Founder and President, SisterLove Inc.
  • Pastor William Francis, Ambassador, The Black Church and HIV

Moderator: Julio Capó Jr., Associate Professor of History and Deputy Director of the Wolfsonian Public Humanities Lab, Florida International University

Related Resources

AIDS at the Intersection of Community, Science, and Policy
(A three-part video webinar series for World AIDS Day 2020)

Resource Type
Videos and Webcasts
Topics
Life Science, Social Studies
Exhibit
Outbreak: Epidemics in a Connected World