The AIDS Epidemic: Then and Now

Episode 11

“Inequality directly affected the scope of the epidemic.” Historian Jennifer Brier and CAARAC founder Shakita Jones discuss the history and structural discrimination surrounding AIDS, and how to approach these difficult conversations in the classroom.

 

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Shakita Brooks Jones

Jennifer Brier

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John D’Emilio: It was Friday morning, July 3rd, 1981. As I got out of bed, I began imagining the fun I would have over the Fourth of July weekend. I fixed a pot of coffee for myself and the two close friends I lived with. As it was brewing, I went to my apartment door to bring in my copy of the New York Times. As we usually did, Tony, David and I sat in our living room, sipping our coffee, quickly skimming different sections of the Times and talking about our plans for the day. But that morning, in the middle of our casual chatter, Tony stopped us and called our attention to a very unusual article in the paper.

There, on page 20, was a headline, “Rare Cancer Seen in 41 Homosexuals.” The article went on to describe how doctors in New York and San Francisco had identified 41 gay men as suffering from Kaposi’s Sarcoma, a very unusual form of cancer, and how their immune systems seemed to have collapsed so that they were unable to respond to treatment. Was this just another form of homophobia? we wondered. Were doctors and journalists treat[ing] gayness as a form of disease?

Although homophobia did figure into how the press reported on the story, as it turned out, we were reading the first news article on what proved to be one of the greatest public health crises of the 20th century. This was a report on a new medical condition that would come to be labeled Acquired Immune Deficiency Syndrome, commonly referred to as AIDS. Researchers would eventually identify the cause of the condition as a retrovirus, HIV, which destroyed the ability of a human body to fight off infections.

New York City, where I then lived, was one of the first places where AIDS surfaced, and in the months following that first news report, my roommates and I learned of friends and acquaintances and friends of friends who succumbed to HIV infection and passed away. In those first years, the number of cases that were diagnosed and the number of deaths reported were doubling at an alarming speed. While most cases initially seemed to be in cities known to have large gay communities like New York, San Francisco and Los Angeles, with every passing year, the reach of the epidemic spread geographically, until soon, there were cases in every state and every large metropolitan area.

Healthcare professionals were completely unable to help in any way. In almost every case, a diagnosis of AIDS seemed to be a death sentence in the 1980s and early 1990s. As I and other members of the LGBT community from those years remember, one of the most enraging features of the epidemic was the way that, for several years, it was underreported in the news and largely ignored by political leaders. Ronald Reagan, who became president the same year as the first reported cases of AIDS, did not even mention the epidemic for the first five years of his presidency.

More Americans died of AIDS during the 1980s than died fighting in Vietnam in the 1960s and 1970s. Can you imagine teaching the history of the U.S. in the 1960s and the presidency of Lyndon Johnson without teaching about the war in Southeast Asia? Yet, most histories that I have read about the 1980s and the presidency of Ronald Reagan barely mention the AIDS epidemic. AIDS can certainly be a difficult subject to lecture about and discuss in the classroom, yet it’s as important a topic as one can find, not only in LGBTQ history, but in U.S. history in the late 20th century.

More than half a million Americans have died of AIDS, regardless of orientation, gender, ethnicity or class. Today, there are still 50,000 or so new infections per year. The AIDS epidemic is a story of oppression, the shameful neglect by the government and the fearmongering of the press about homosexuals and the dangers they pose to the rest of the population. But it is also a story of resistance and resilience. The AIDS epidemic provoked the LGBT community to organize in powerful ways.

More people came out of the closet than ever before. Activists built organizations to educate the community and to provide care and assistance to those who were sick. Groups like ACT UP, the AIDS Coalition to Unleash Power, fought back against the government, the media and the healthcare industry by engaging in militant, angry, disruptive protests. By the 1990s, all of this led to the LGBT community becoming, for the first time, a constituency in national politics.

It is a sad commentary on the depths of homophobia and oppression that it took a devastating epidemic to finally bring widespread recognition to the LGBT community. Teaching about the epidemic and its place in late 20th-century history can be an effective tool for raising issues, not only about LGBTQ history, but also about the politics and the inequalities of these decades. I’m John D’Emilio, and this is Queer America, a special series from Teaching Tolerance, a project of the Southern Poverty Law Center.

LGBTQ history has been largely neglected in the classroom, but it’s necessary to give students a fuller history of the United States and to help them understand how that history shaped the society they live in. This podcast provides a detailed look at how to incorporate important cultural touchstones, notable figures and political debates into an inclusive U.S. history curriculum. In each episode, we explore a different topic, walking you through historical concepts, suggesting useful source material and offering practical classroom exercises.

Talking with students about sexual and gender identity can be emotional and complex. This podcast is a resource for navigating those challenges, so teachers and students can discover the history and comprehend the legacy of queer America. In this episode, historian Jennifer Brier talks with Shakita Jones, the founder of the Central Alabama Alliance, Resource & Advocacy Center, about the history, myths and structural inequalities surrounding HIV/AIDS. Together, they describe how you can approach these difficult conversations in the classroom. Here are Jennifer Brier and Shakita Jones.

Jennifer Brier: I’m Jenny Brier. I’m a historian, and I teach at the University of Illinois at Chicago, where I am also the director of Gender and Women’s Studies. I published a book about the history of AIDS called Infectious Ideas in 2009, so it’s the 10th anniversary of that, and I have spent the last 10 years or so really thinking about how AIDS can be included in different kinds of classrooms, different kinds of public history venues, and I'm excited to be in conversation with you today, Shakita.

Shakita Jones: Thank you, Jenny. My name is Shakita Jones, and I am a social worker, and I have worked in the HIV/AIDS field for about 20 years as a social worker. I am the founder and executive director of Central Alabama Alliance, Resource & Advocacy Center, where we work on issues directly related to people living with HIV.

One of the things that we really like to focus on is stigma as it relates to HIV and to help the community understand the issues directly related to people, the impact, and how we can all make solutions to better serve and love each other. Thank you very much for being in conversation with me this morning. I am so excited to have this conversation with you and to also gain more knowledge about your work and the history of AIDS.

Jennifer Brier: Let’s do this. Let’s start with today. Let’s start with you, Shakita, telling us a little bit about the state of the HIV/AIDS epidemic currently. I think one thing that is important to know is, that AIDS is still a crisis. It’s a set of crises. Can you tell us a little bit about what you see on the ground in Alabama right now?

Shakita Jones: Fifty-two percent, according to CDC, 52 percent of the new HIV diagnoses are in the South. That’s high. That’s ridiculously high. Right now, in Alabama, we still are not in a position where we openly talk about HIV and AIDS and the behavior related to contracting HIV. We still have issues within our school system, within just the culture of the state as it relates to educating people about HIV.

What I hear a lot on the ground, as I go into communities and I talk about HIV, most people say, “Is that still a thing? Is that still happening?” It’s because the messages aren’t really getting out there, and funding is always an issue. There are barriers to places that we can go and talk about these messages. We are very restricted on how we can educate about HIV, and we have a high rate of African American women who are being infected.

That’s a strong indication that the resources and the messages are not getting to or being limited as it relates to talking about it. This, I think, is directly related to stigma. Yes. We do have high rates here, definitely. With 52 percent of new diagnoses in the South, I mean, it’s just overwhelming, and it’s alarming, and it seems like, definitely, in our corner of the world, that people need to be worried about that. We have challenges here.

We have challenges, but there are good advocates like myself who are just going to persevere, and we’re going to continue to do the work.

Jennifer Brier: Just to call out a text that people could look at, Linda Villarosa had a cover story in The New York Times Magazine called “America’s Hidden HIV Epidemic” in June of 2017. She has extensive research in the piece, as well as the stories of many black and gay men and men who have sex with men in the South. She cites the statistic that the South is home to 21 of the 25 metropolitan areas with the highest HIV prevalence among gay and bisexual men, including places like Jackson, Mississippi.

She talks about what it means to understand, to Shakita’s point, really, that the AIDS epidemic in the United States today is a Southern epidemic. It is an epidemic that affects black and African-American people, particularly gay men and men who have sex with men as well as women. There are a set of reasons, long-standing historical reasons, that the South is experiencing this prevalence of HIV, that might be best found by going back in time.

Shakita Jones: I really do thank you for lifting up that article. Jenny, let’s talk about how we got here. We have to understand the conditions of pre-1981. Let’s talk a little bit about the conditions.

Jennifer Brier: Okay. There’s really this sense, that 1981 is the start of the AIDS epidemic, because in 1981, the first cases of the disease that would become HIV/AIDS was reported on in The New York Times and the Morbidity and Mortality Weekly Reports from the Centers for Disease Control, that something is affecting, at the time, the texts claim, that it’s affecting gay men. What we now know is, that the disease that would become known as HIV/AIDS—first, AIDS, then later, HIV/AIDS—exists in various populations throughout the 1970s.

In fact, probably in the 1970s, it’s endemic. It’s not yet epidemic. It’s the conditions throughout the 1970s that get us to the point, where something happens to a group of people who should, and this is the phrase that they use, “Are otherwise supposed to be healthy.” The first reports of this immune-compromised status, sometimes referred to as GRID, gay-related immunodeficiency, in the early 1980s, there was this assumption that these white gay men should not be sick.

They are healthy. They are young. They are vibrant, and so there’s this assumption that once they start to get sick, something new is happening. I guess the question is, “How new was it?” What we know is that it wasn’t so new, as I’ve just explained, but also that the structural changes going on in the political economy of the 1970s really produces the conditions under which HIV will spread in the 1980s and become an epidemic.

Here, I’m talking specifically about the United States. Some of the conditions that I think are important to name and understand are a profound growth of inequality between the haves and have-nots over the course of the 1970s and the early 1980s. That’s caused by stagflation in the 1970s, by major changes to the political economy of the United States. It’s caused by the oil crisis. It’s caused by the fact that we have incredible inflation that makes poor people poorer and rich people richer, makes it harder to pay back a little bit of money, even as it makes it easier to accumulate money for some.

There’s also major changes going on in the way the blood-products industry is functioning. For the first time, in the 1970s, it becomes a practice that companies will buy blood from anyone basically to produce the different kinds of blood products that are used for people with hemophilia and other blood conditions. Before, it was that blood couldn’t be pooled together, plasma couldn’t be pooled together to make certain kinds of blood products for people who had blood disorders, and by the 1970s, the blood industry begins to do that, and the people who are most interested in selling blood are people who have the least access to resources, and so it becomes…

Many people have written about and thought about what it means to have to sell your blood to survive. That’s another thing that’s happened. The other thing that happens in the 1970s, 1972 to be specific, is the Tuskegee Syphilis Study is finally shut down in 1972. That is only nine years before those first reported cases of AIDS, and I think it’s important to understand what the Tuskegee example says about how African Americans understood the public health infrastructure of this country, how scientific experiments could be practiced on African Americans, the way that racism made it possible to justify scientific experiments on African-American men around what we now today call sexually transmitted infections then might’ve been called STDs in the case of syphilis.

There’s also widespread travel, and the processes of globalization are coming into the fore over the course of the 1970s, whether it is through individual travel between places or the sort of increased push to have, especially the United States government, take part in development efforts across the globe. The distance between places is shrinking. Or the ability to move between places is becoming easier.

There is also, and I think this is important to name, the sexual liberation of the 1970s that affected and liberated all sorts of people to think about sex apart from reproduction. So whether that is gay and lesbian liberation, which is a particular sexual liberation free from heterosexual reproduction or the use of the pill over the course of the 1960s and ’70s to make it possible for heterosexual women to have sex without necessarily fear of pregnancy. Roe v. Wade, 1973, changes the relationship between making abortion legal, changes the relationship again between heterosexual sex and reproduction.

Those changes have a major impact on all of the communities that are first understood as the communities that are affected by AIDS. I think it’s important to recognize that lots of different communities are affected by AIDS before 1981. It’s pretty clear that this virus that we now call HIV, Human Immunodeficiency Virus, was traveling in different communities in the 1970s. It was clearly among people using IV drugs, so there were reports of something called “junkie pneumonia,” but what’s important about that is, that, in fact, those people are not understood as, one, necessarily deserving of healthcare or of attending to their health needs.

Two, the conditions of people who use drugs being sick; it’s a key piece of how we understand drug use. “Drugs make you sick, and using illegal drugs makes you sick. It makes you addicted. It breaks you. It destroys you.” At the same time, I want to be careful, careful to make it clear that this is not about blaming any particular people for causing AIDS. I think that that’s a really important thing to say out loud and to say consistently throughout this conversation.

Laying out this historical framing is really about understanding the structural conditions, the larger conditions that make it possible for this virus to spread across categories of people at a particular time when the state or the government is not necessarily protecting all people in the same way, is not necessarily providing for all of its citizens in the same way, and to also recognize that it is a set of behaviors within that larger structure that make AIDS or HIV spread.

That, we understand, that those two things are very much related, and that no one should be blamed for being HIV-positive, and no one community should ever be blamed for what’s happened. I think that’s just a really important thing to say out loud, especially in this period, where blame became one of the most powerful and constant pieces of the AIDS epidemic:  blaming who was first, trying to figure out whose fault it was, that we were in this situation, saying that some people were innocent victims, implying that other people were guilty, or that what they had done, that they brought this on themselves.

I just want to say, that naming these social conditions is a way of walking us back from that, and I think that’s an important thing to think about in your classrooms.

Shakita Jones: Right. I really thank you for pointing that out. I think you’re absolutely correct, that it could be any chain of events—

Jennifer Brier: Right.

Shakita Jones: … that happened for someone to be impacted by this. I also think, that when you run up the Tuskegee study, especially being in Alabama and working with people with HIV—

Jennifer Brier: Yes.

Shakita Jones: … that the challenge, especially in Montgomery being just 45 minutes away from Tuskegee, where there wasn’t a clinic at the time, back then, when I started practicing social work, the challenge would be, with people who were from that area, was trusting us enough to take the medicine—

Jennifer Brier: Right.

Shakita Jones: … trusting us enough to get treatment. I think that that is very important, how you made the connection of how that particular study impacted the nation and actually the world and helped to look at medicine and treatment a lot differently as it relates to trust and especially in the African American community at times.

John D’Emilio: This is Queer America, and I’m your host, John D’Emilio. You can learn even more about how to teach AIDS in a U.S. history survey in a valuable collection of essays called Understanding and Teaching U.S. Lesbian, Gay, Bisexual, and Transgender History. This podcast is produced in partnership with the University of Wisconsin Press, publishers of this anthology, which was edited by Susan K. Freeman and my cohost, Leila Rupp.

It is the first book designed for high school and university teachers who want to integrate queer history into their standard curriculum. You’ll find the link to purchase the book at tolerance.org/podcasts. Here is Shakita Jones,

Shakita Jones: Jenny, let’s talk about how the epidemic unfolded in the ’80s and ’90s.

Jennifer Brier: There’s a long history of associating people who have same-sex desire or are gender nonconforming or are gay or lesbian or bisexual or transgender as sick. “They’re not normal. They’re not interested in making children.” I mean, all of the horrible and homophobic things, but really an association between illness and gayness pervades the 20th century in the United States. When this epidemic emerges in the 1980s, it’s on the heels of a kind of liberation from some of that.

There’s really an attempt to say that it’s homophobia that’s making you sick, not homosexuality that’s making you sick. That’s an important distinction that activists throughout the 1970s are making. It’s also very clear that there is widespread sexually transmitted infections among various communities throughout the 1970s, whether it’s syphilis or gonorrhea, chlamydia, and that the confluence of things make it, so that AIDS becomes a magnified version of all of those things, right?

It is like, not only is gayness associated with illness, but now gayness is associated with death—so it’s not just being sick. It’s actually something that you can die from; in fact, that it’s something that you will die from. It will be a painful and horrible death.

I think it’s important to name that part of what people living with AIDS do over the course of the 1980s as they fuel and become leaders in a social movement that is organized to fight AIDS, whether it’s in terms of demanding that we develop different treatment, or we think seriously about what it means to prevent the spread of HIV, or even to just love and care for people who are dying is that people with AIDS must be at the center of that work.

That they are not to be pariahs. That they are not to be treated as guilty of something and therefore dying. That they are not to be understood as the problem, but actually that they have within them based partially on their experiences, but also their commitment and their activism, their thinking—they are, and need to be, central to the solutions that we create.

The idea that gayness and illness are associated is long-standing as is the refusal of that argument, as is the argument that homophobia is the illness, not homosexuality. They exist hand in hand. You need to understand both of those things to figure out how we get to where we are today.

Shakita Jones: I did want to point out, that in the book, on page 283, you did mention that AIDS activists refused to allow AIDS to be defined as a gay disease by insisting that AIDS-prevention strategies focus on the kinds of behaviors, so I operate it in sex and sharing needles, rather than identities of homosexuals and drug users. Then, the first activists made a case for understanding how the disease actually spread. They acknowledged that racial and economic inequality directly affected the scope of the epidemic in the U.S., even though solutions that addressed the underlying racism and classism did not necessarily follow. I think it’s interesting to–

Jennifer Brier: Right.

Shakita Jones: … acknowledge, that the initial activists wanted to disconnect it from being a gay disease. They really wanted to focus on the behaviors of the people that were ultimately getting infected by the virus. At the same time, we understand that the racial-economic components of it were acknowledged, but it was maybe not addressed as some feel like it should’ve been. What are your thoughts on that?

Jennifer Brier: I think that’s important to understand. Initially, the way public health entities or public health officials talked about AIDS was that it affected certain “risk groups,” and those risk groups were based on particular identities. One of the ways that they were talked about is, they were called the four H’s:  “homosexuals, hemophiliacs, Haitians and heroin IV drug users.”

There was a fifth H that sometimes got thrown in there, which was “hookers,” which was a very ’80s version of sex workers, and those were often and almost exclusively understood as women, because women, in the early ’80s, were understood as vectors for disease, not as people who were, themselves, affected by AIDS. Even though we know that women are among the first cases reported in almost all of the first articles in the MMWR, there are at least a handful of women among those cases.

This group of four H’s, they’re based on an identity, not on a behavior. Part of what activists did over the course of the early 1980s is that they insisted that the focus shift from risk groups based on identity, to behaviors. You hear about different kinds of risk behaviors. That’s the underlying reason why we have something called “safer sex.” It’s because it’s an idea: that you intervene in behavior, and you’ll more likely stop the transmission of the epidemic than you will if you focus your attention on a group of people who you call “gay men.” 

Because guess what? What if you don’t call yourself a gay man, but you have sex with other men? You don’t see any of the material produced that talks about wearing condoms. You don’t think that it affects you. You are able to push it out of sight, out of mind. What safer sex activists do, and early AIDS activists, is they insist that we have to not only change behaviors. We have to try to make sure that people use condoms. In the case of people using intravenous drugs, that they use clean needles; they don’t share needles with one another.

They really make a concerted effort to address the behaviors that are causing the spread of HIV. That comes out of gay and lesbian, LGBT communities. It doesn’t come from the other direction. It comes from the bottom-up, and I think that’s one important piece of it. What doesn’t happen until later—and this gets back to the question about the racial and economic inequality that is inherent to the AIDS epidemic in the United States—is, it’s not until the late 1980s or early 1990s that people make the argument, that, in fact, housing is one of the things that people need to prevent the spread of HIV.

It’s one thing to say, “Wear a condom.” It’s another thing to say, “We need to have supportive and sufficient and reasonable housing for people, so that they are able to either access healthcare or not have to engage in exchange sex, not have to use, sell their bodies for survival.”

I think that part of what starts to become clear over the course of the 1980s is that the realities of racial and economic inequality, whether it’s the way the drug war is dealt with, whether it’s the realities of the increase of the prison nation, whether it’s a rapidly shrinking welfare state, either in the form of lack of housing, changes to welfare, changes to all sorts of state and federal provisions, that those conditions too spread HIV—not just as much, but alongside the reality, that a condom can stop the passing of HIV from one person to another.

I think there is clarity over the course of the 1980s and 1990s that there are lots of different causes, and we have to start to grapple with them even if they are at these different levels of individual behavior, as well as these, what I might call, and what other scholars like Paul Farmer have called, more structural violence that makes people unwell.

Shakita Jones: I remember people asking me, “Aren’t you afraid to work with people with HIV?” I just said, “No. Fear was not on my mind.” We do understand that there was a period of time where there was fear associated with people living with HIV, and I think it’s important that as we think about our memories, we also think about the stigma that was around it as well, so we could be able to bring that to light and understand where that was coming from.

Jennifer Brier: On this front, it’s really important to sort of name some of the profound—I would say, before stigma, even—the profound abandonment of people dying from AIDS in the early 1980s. We read example after example after example of largely men dying from AIDS who were abandoned at ERs because no one would take care of them, or of ambulances refusing to drive somebody to the hospital, or once someone was at the hospital, of staff refusing to bring food in, so their food would sit outside in hospital corridors because no one would bring it in because people were afraid.

Then you see all of these posters of people saying, “You can’t catch AIDS from sharing a water glass, hugging someone, using the same bathroom as them, using the same water fountain, using the same pool.” There is profound fear about how AIDS spreads and so just to mark the timeline of things, we start using the term Acquired Immunodeficiency Syndrome sometime around 1982. From about 1982 to 1985, maybe 1986, it’s referred to as the AIDS epidemic.

It’s not until 1985 that the term, the acronym, HIV, comes into use; it’s even coined. We know, somewhere in 1983, 1984, that AIDS is likely caused by this virus. What it’s named is controversial. There is a battle between French scientists and U.S. scientists, and suffice it to say, that it comes to be called HIV, Human Immunodeficiency Virus.

Then, it’s later in the 1980s, where we used the acronym HIV/AIDS to talk about what we’re talking about.

During that early- to mid-1980s period, where there are no drugs that treat this, there’s profound physical complications and visible illness on people’s bodies who have AIDS—whether it’s KS, Kaposi’s Sarcoma, which are the purple splotches that can appear on people’s bodies, or wasting, so they become very thin and their cheeks become very hollowed out. There was profound fear of anybody who was sick. There was this sense that anybody could be next and that you could be infected in lots of different ways.

There’s even some wrongheaded and problematic discussions of the fact that it might be airborne, or it might be communicable through daily household activities, and so there was profound fear that touching somebody with AIDS would mean that you were at risk of contracting AIDS. I think, before there was even stigma, there was this fear of what it meant to be near people with AIDS, and so one of the other important things that happens over the course of the 1980s in relationship to this point about stigma is that there's the formation of an organization called the People with AIDS Coalition.

They write a document that I talk about in the article called “The Denver Principles” in 1983, and they make the case that people with AIDS should not be called victims. They should not be understood as somehow pitiful but that they should be understood as people living with AIDS who are worthy of care and deserving of respect. There’s a constant battle and it continues to be a constant battle over the course of the last 40 years to really figure out how to treat people with respect and to provide them with care at the same time that we recognize the profound stigma that comes along with this deadly disease.

Shakita Jones: I really appreciate you bringing up just how people at the time were alienated. I remember being a social worker at the time and someone being in the end stages and their family not wanting to take them in, and nursing homes in the area not taking them. We were concerned about if it was legal.

Jennifer Brier: Exactly.

Shakita Jones: A lot of times, we would either have to send people to Georgia or Florida to go into an end-stage living facility. It’s very important to bring that out:  how people were treated and just the loss of the dignity or respect of the person. Thank you for sharing that. In the book, you mentioned for communities that experience historical disenfranchisement and structural inequality, AIDS service needed to include healthcare, housing and economic empowerment.

Then also, you mentioned, by the end of the ’80s, activists have fundamentally changed the conversation about AIDS from being one about a virus that functioned as a death sentence to one about how inequality spreads disease and how the U.S. government failed to address some of the largest public health crisis in the post-war era.

As we think about the things that I just mentioned, how can you use the AIDS epidemic to talk about public policy and why public policy matters and why disparities matter? How can we use the AIDS epidemic to talk about the connection, in the classroom?

Jennifer Brier: Inequality is what produces health disparities when it comes to AIDS, and I think it’s important to sort of name that out loud. There are different moments in the history of AIDS, particularly with a document like C. Everett Koop’s report that is sent to every household in the United States in 1986. This idea that anybody can be affected by AIDS.

And it’s true; that meant that heterosexuals were also at risk. There have been different moments in the 1980s where people have talked about what it means for AIDS to affect heterosexuals and often when people were talking about heterosexuals, in that case, they were talking about white heterosexuals. They were not talking about people of color.

They were talking about white people, and so I think it’s really important to hold in your mind particularly as you think about teaching this, that race and sexuality and gender are always intersecting with one another and that how you approach the subject of HIV/AIDS in history or social studies really requires that you grapple with the intersections of both identity categories but also the intersections of these large systems of inequality or oppression.

Understanding how homophobia and racism relate to one another and fuel the way the AIDS epidemic looks and the racial and gender disparities that are part of the AIDS epidemic so that when we say that inequality fuels the disparities or I think I wrote in this essay that AIDS follows along the lines of inequality. It’s, in fact, fueled by it.

That’s, in fact, what we’re talking about:  Not that any particular kind of person is more susceptible to AIDS, so it’s not something biological. It’s not like one body is more susceptible than another body. It’s, in fact, that the social conditions make the disparities grow. So inequality fuels that.

That gets stitched into how various federal or municipal or governmental agencies produce public policy in relation to that, whether it’s in terms of healthcare or in terms of drug discovery and drug distribution of antiretroviral drugs or whether it’s in terms of housing or drug treatment or education, what happens in schools, what the Department of Education says you should and should not talk about in schools.

What local school councils say you should and should not talk about in schools— public grade schools or middle schools or high schools. All of that is in this witches’ brew of the relationship between inequality, disparity and policy. I’ve alluded to it before, the idea that people living with AIDS are at the forefront of the kinds of solutions that get imagined over the course of the 1980s and 1990s.

That is certainly true in the case of the direct action social movements of the 1980s and 1990s. I think the one people will be most familiar with is ACT UP, the AIDS Coalition to Unleash Power, which starts in New York but rapidly spreads across the country and the world as a direct-action organization that engages in civil disobedience, that produces protests, that tries to shut down the Food and Drug Administration, that storms the National Institutes of Health. That really fundamentally changes the way AIDS is understood.

There’s a famous poster, “Kissing Doesn’t Kill:  Greed and Indifference Do,” so they really target both the federal government and its various healthcare entities to activate them to insist, to demand that they produce systems for caring with people with AIDS for developing treatments, for thinking about prevention.

They also fight and struggle with and then ultimately engage in processes with a big pharmaceutical company, so activists who are in ACT UP learn about how the pharmaceutical industry works, how drug development happens, and they are at the table in conversations about drug development and trials around drug development.

They force the federal government to change the way it tests drugs and in the process, it’s not just pharmaceutical companies that develop ultimately, antiretroviral treatment that happens in 1996 that is now one of the best ways to treat HIV/AIDS.

But it’s actually AIDS activists and people living with AIDS who put their bodies on the line to become test subjects for different combinations of drugs at different levels in different orders and different sequences that really get us to a place where there’s something called a cocktail where you take different combinations of drugs.

That happens because people living with AIDS are willing to sacrifice themselves to find and develop these treatments. AIDS activism is a powerful story of social movements. It’s a way of answering many of the historical arguments about the end of the social movements of the 1960s and 1970s and really returning to questions of how ordinary people engage in extraordinary actions to produce social change.

I would say that that’s another way of talking about AIDS without necessarily talking about sex, so you can talk about the social movements back to this question of, “How do you talk about AIDS in a space where you’re talking about abstinence?” You can talk about the activism of the late 1980s and early 1990s and the ways they really tried to make demands about healthcare being a right, about housing being a right.

Using the slogan “Get drugs into bodies” as a way to treat and care for people living with HIV/AIDS.

John D’Emilio: You’re listening to Queer America. I’m your host, John D’Emilio. Teaching Tolerance has learned a lot about what LGBTQ students need to thrive, how even small policy adjustments and curriculum changes can make a big difference in the lives of queer and non-binary students. We also know that LGBTQ-inclusive schools benefit all students.

Our new LGBTQ Best Practices Guide can help educators and school leaders ensure that all students feel safe, seen and capable of success. By creating a curriculum as complete and representative as possible and cultivating a school climate that fosters open and respectful dialogue among all students and staff, you are preparing your students to engage and thrive within our diverse democracy.

You can find it at tolerance.org/podcasts. Again, here are Jennifer Brier and Shakita Jones.

Shakita Jones: As you were talking, I’m thinking about how teachers should approach this in the classroom but as we talked about before, not assigning blame to anyone for the virus. How can they approach this without saying, “This person is poor so they have a greater chance of contracting HIV.” I want to be careful not to just say, “Because of this circumstance, this person has a higher risk.”

How can a teacher be able to present this information and make those connections where it’s not coming off that way, especially when we’re looking at the middle and high school students?

Jennifer Brier: That’s such a great question. I think a couple ways to think about it come to me from the history of health, not necessarily the history of HIV/AIDS, which is—“How do we want to talk about what wellness means? Do we want to talk about health and wellness as more than the absence of disease?” If that’s the case, if we can have a conversation with the young people in our classrooms about what it means to be well, what it means to be healthy.

What are the conditions that need to be met? What are the kinds of services or practices or resources that need to be in place to define yourself as healthy? That might include, in today’s day and age, a conversation about the relationship between mental health and physical health. That may include a conversation about access to adequate and healthy food.

That may include growing up in a place that doesn’t have pollution. That may include adequate, as I said earlier, adequate housing and shelter. It may include love and care from the family members around you, as well as the absence of disease and what it means to have someone care for you when you’re sick.

What it means to have access to medicine, what it means to have access to preventative things like exercise or clean water. I think one of the ways to talk about it is to really name what it means to be healthy and that then becomes part of a larger conversation about the things that make young people—whether they’re middle school or high school, teenagers—What makes them healthy?

What produces the conditions that they can thrive in? I think that’s a way to do it and then, HIV/AIDS isn’t exceptional. Because that’s part of the other thing. It’s like there’s a way in which right now we understand AIDS as a chronic condition and I don’t want to suggest that we don’t treat it as a deadly epidemic; that we don’t treat it as something profoundly serious that requires constant work.

But that it fits within a larger context of what makes people ill and unwell and also the kinds of things that people have access to that will allow them to survive a range of conditions that HIV may or may not be part of. Meaning, if you are housing insecure and you are food insecure, HIV fits in a very different place in terms of your own sense of your survival than if you have access to a range of resources.

Then HIV functions in a different way in your life, in the way you think about what would keep you well. It’s a really hard question to answer. Yeah.

Shakita Jones: It is. And also, how can we make that connection to behavior where we’re not demonizing any kinds of behavior or we’re not saying that this is wrong; that we’re just strictly just saying, “This is the behavior that can lead to this,” as well as understanding that we are dealing with human behavior? What that means, and allowing for that normal human empathy of, “How do we respect each other as humans as we think about the social inequalities?”

How do we understand that we are more alike than we are different? How does someone teach this to a child? Not to be afraid and to be able to understand the conditions that someone is facing. Before and after they contract this, how can a teacher put this in a lesson plan, I guess, to understand this?

Jennifer Brier: Well, I do think it goes back—for me, it always goes back to people who I write about every chance I get to—this pair of friends and writers, Richard Berkowitz and Michael Callen, who were among the first people to come up with the idea of safer sex. Michael Callen died in the ‘90s; Richard Berkowitz is still alive. [These] gay men living in New York City in the 1970s and 1980s wrote a book in 1983 that they self-published called How to Have Sex in an Epidemic

And there may be some teachers listening to this who feel comfortable and are able to have or allowed to have conversations about sex that are open and frank. I think many more teachers are uncomfortable and unable to do tha”t. 

But I do think it’s important to understand that safer sex is part of a long history; it’s the beginning of an idea that now has a long history, which is that it’s possible to do something called “harm reduction”; that telling people that they cannot do something is not a way to get them not to do it. You, Shakita, as a social worker, know that probably better than just about anybody.

Shakita Jones: I absolutely do.

Jennifer Brier: Anybody who’s listening to this who’s the parent of a child knows that telling a child not to do something basically guarantees that the child will do it, if only to aggravate you as a parent. And so commanding people to change their behavior doesn’t work. 

Just as we know that telling people not to do something, to practice abstinence, likely doesn’t work either. People create all sorts of ways of understanding the kinds of sexual activity that they engage in as not “actual intercourse” and therefore, they are “maintaining abstinence” when in fact, we know that the behaviors that they’re practicing are likely to put them at risk for contracting sexually transmitted infections just as much as heterosexual intercourse might.

What I do with my students, and admittedly, my students are college-age students and so it’s different—but I try to have frank and open conversations about the relationship between sex and love. But also, from Michael Callen and Richard Berkowitz, I know that it’s possible to say that you can have care for somebody that you’re having sex with even if you’re not in love with them, and that we need to really tap into what it means to care for one another in all of these contexts.

Separate from the statement that the only time you should have sex with someone is if you love them—because we just know that that’s not true. We know the reality of gender-based and sexual violence that teenagers experience. We know the statistics about unwanted sexual activity.

I’m not suggesting that rape or sexual violence is the key to this. I’m actually saying that if we could talk frankly and openly about how young people engage with one another sexually and are not uncomfortable about it, if we give them a space to really express their sense of care and their sense of desire, we might get somewhere with helping them see that sex must always be practiced with consent.

And that consent is an ongoing process and that consent is also a way to negotiate and navigate condom use. It’s also a way to navigate the kinds of sex that you want to have. And I think we need to be open to the possibility that young people know more than we think that they do. And thinking that talking about abstinence is going to help them—in my opinion, it’s not the right approach.

I know that that’s complicated to say to a group of teachers, many of whom are obliged by their municipal and local entities to talk about abstinence and that’s a long history that comes out of the Reagan administration; it’s reinforced in both Bush administrations.

Shakita Jones: What do you think about instead of having that abstinence conversation, turn it into talking about, well, what about healthy relationships?

Jennifer Brier: Absolutely. 

Shakita Jones: Adding the components of healthy relationships. In communication, and what negotiation looks like in relationships. And when I say relationships, like you just mentioned… One-night stands happen, let’s just say that. That still is a relationship at that period of time. How can teachers have this conversation in the classroom as they talk about abstinence? I’m saying it could be a “both/and.”

Yeah.

Jennifer Brier: I think to the point that you’re making is that if you are compelled to teach about abstinence, you can do that and you have other options. You can talk about this idea of health as more than the absence of disease. You can talk about consent in very broad terms. I’m sure that there are ways that you can access conversations about sexual consent even in an abstinence space.

That, I would defer to those of you who are in those environments. But you can also talk about how consent makes relationships healthy, and how that is about a constant process of negotiation between people; that it requires communication; that it requires talking.

The reality is that there are lots of ways that people build relationships and some of them are healthy and some of them are not. We need to just acknowledge that fact.

Shakita Jones: Do you have any films or any online resources or books that you would suggest?

Jennifer Brier: For that, there are many things that you can access. The first is, as I mentioned before, the ACT UP AIDS Oral History Project that is online. You can access all of the transcripts for… I think there are almost 200 interviews and there are short snippets of film so the interviews were filmed. You can see those and you can teach them.

I regularly have students look at the website and select one of the people and then take a deep dive into those transcripts and then they have a conversation with one another through the narrators of the oral histories. Sarah Schulman and Jim Hubbard, who were the producers of that project, have also made a film called United in Anger, which can be screened in a classroom.

I think many people have probably thought about and shown How to Survive a Plague, which is the Academy Award-nominated film made by an ACT UP member in New York. I would say that United in Anger makes a much broader case for understanding AIDS activism of the late 1980s than How to Survive a Plague, which focuses on five people and focuses almost exclusively on the idea about getting drugs into bodies, while United in Anger focuses on the larger social movement of thinking about universal healthcare, housing, reproductive rights and reproductive justice more broadly.

I like to pair those two together. The other thing that I definitely encourage people to look at, I curated an exhibition and online set of resources at the National Library of Medicine, which is the national library on the National Institutes of Health campus called “Surviving and Thriving:  AIDS, Politics and Culture.”

In that collection are hundreds and hundreds of AIDS posters. That collection tells the story of one strand of the story of the history that I’ve talked about here and you can see the exhibition panels are online. They’ve just now been translated into Spanish and, in 2019, have begun to travel. They’re testing that Spanish language and it’s a bilingual show so you could actually see if you could order and get that exhibition displayed in your local library or community organization or community center where you, in and around where you are.

You can also use the digital gallery on the website to look at hundreds of posters. There are also thousands and thousands of incredible AIDS posters at the University of Rochester in the AIDS Education Collection, which I highly recommend you take a look at. That really leads me to the last exercise that I might encourage people to consider in a middle school or high school classroom, which would be to look at any of the posters that I’ve just talked about whether they’re at the National Library of Medicine or the AIDS Education Collection.

Or take a field trip to your local AIDS organization and see the posters they create, if there are anything. In Chicago, there was recently a big bus campaign for black folks around using PrEP, pre-exposure prophylaxis. Really, look at the kinds of AIDS posters that exist in your world right now or look at ones from the past and do a maker session with your students where you ask them to imagine what they think belongs in a poster.

They’ll have to think about who the audience for the poster is. They’ll have to think about what they understand or imagine that audience knows or doesn’t know. They’ll have to think about what kind of action they’re asking people to take or suggesting people take or a way that they want people to feel. It’ll also really ask them to stretch their artistic and critical thinking to think about what is at stake with trying to convince somebody to do something with just one look.

Do they want to have explicit instructions? Do they want to use certain kinds of images? Do they want to really…do they want to design different kinds of posters for different communities? Do they want to think of themselves, their own age group as an audience and what they think their peers would want to see and how they think they could convince their peers to do something different or understand AIDS in a different way?

Maybe they want to make a poster after your lessons where they talk about AIDS as produced by a set of social and structural conditions. How would they do that? I’ve done that exercise with intergenerational groups, so with elders and young people together. I’ve also done it just with young people, high school students at different events.

It can just be a time for them to really think about the kinds of issues that they see around them. Maybe they want to talk about getting tested. Maybe they want to talk about what it means to get access to medical care and healthcare. It can be a powerful tool and if they see examples of posters, they can critically interpret them.

They can do a visual analysis, a critical analysis, of the existing posters and then they can challenge themselves to create their own. The exhibition I curated at the National Library of Medicine can easily be found by searching “Surviving and Thriving” and “National Library of Medicine.” You'll find, once you click through, you’ll find both the exhibition and the digital gallery of 250 posters that we curated.

You’ll also find there, a set of lesson plans designed by different teachers at the high school and college level that you can use in your classroom.

Shakita Jones: Thank you, Jenny, for all the information that you have shared. And that you have just enlightened, especially me with as someone that does teach on a college level. I think that this will definitely help me. It will definitely add to my knowledge base. So are there any final thoughts that you would like to add for teachers who are interested in introducing this information to their students or in their classrooms? Why this is so important to talk about in their classrooms.

Jennifer Brier: I think, for me, among the most important phrases to say to myself and I say it a lot is, “AIDS is not over.” I think that if we continue to say that to ourselves, we understand the imperative that we face. We have to continue to talk about it. Not only is AIDS not over right now as we started the interview, as we started our conversation, AIDS disproportionately impacts African American men and Latino men who have sex with other men.

It disproportionately impacts African American women, and we cannot in any stretch of the imagination make the case that AIDS is not over. It’s expanding in unacceptable ways in the United States. Part of what I think is important to know is that, as teachers, many of whom didn’t get AIDS education when we were coming up, whether it was because we were high school students in the 1980s and that didn't exist or whether it was because it was the 1990s or even the early 2000s, where abstinence-only education was really part of the way we learned about AIDS.

We are responsible for learning about and engaging our students so that we can get to a place where we are not seeing the epidemic spread in the ways that it’s spreading. The only way I know how to do that is to talk about it. It’s to really engage and to understand the realities of it and to recognize and name all of the different kinds of epidemics that are part of AIDS. 

Whether it’s racism—all the things we’ve talked about—lack of access to housing, lack of access to healthcare, homophobia, transphobia. We need to name what those are and we need to try and address them. We can’t hide from it. We can’t pretend like it doesn’t exist. 

That’s what I hope this conversation can help people see. It’s a hard conversation. I’m not going to suggest otherwise and I know that Shakita has hard conversations every day of her life with the people that she works with—but they are difficult and completely necessary conversations.

Shakita Jones: Yes, and Jenny, thank you for that and I think that as you mentioned, we should always begin the conversation with “AIDS is not over” and we should always end the conversation with “AIDS is not over.” Thank you very much for your time today and just sharing your knowledge and we hope that this information that has been shared here today will change lives and transform classrooms.

Jennifer Brier: Thank you so much. I could not agree more.

John D’Emilio: Shakita Brooks Jones is the Executive Director of the Central Alabama Alliance, Resource & Advocacy Center and teaches about the history of social welfare policy in the Social Work program at Auburn University. Jennifer Brier is Director of the Gender and Women’s Studies program at the University of Illinois at Chicago, where she is an associate professor in the GWS and History departments. Jennifer is also the author of Infectious Ideas: U.S. Political Response to the AIDS Crisis, published by the University of North Carolina Press.

Queer America is a podcast from Teaching Tolerance, in partnership with the University of Wisconsin Press. They are the publisher of the award-winning anthology, Understanding and Teaching U.S. Lesbian, Gay, Bisexual, and Transgender History.

In each episode, we’re featuring a different scholar to talk about material from a chapter in that collection. You can purchase the book at tolerance.org/podcasts. You’ll also find additional tools including resources we’ve mentioned, episode transcripts and an LGBTQ Best Practices Guide to help your school create an inclusive curriculum and an open and respectful climate for dialogue among students and staff.

Teaching Tolerance is a project of the Southern Poverty Law Center, providing free resources to educators who work with children from kindergarten through high school. You can also find those online at tolerance.org. Thanks to Dr. Brier and Ms. Jones for sharing their insights with us. 

This podcast was produced by Shea Shackleford with production assistance from Russell Gragg. Kate Shuster is our project manager. Music in this episode is by Chris Zabriskie. What do you think? Let us know on Facebook, Twitter and Instagram. Review us in iTunes and please tell your friends and colleagues about this podcast. I’m Dr. John D’Emilio, professor emeritus of history and of gender and women's studies at the University of Illinois at Chicago and your host for Queer America.

 

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