On June 5, 1981, the Centers for Disease Control ( CDC, now the Centers for Disease Control and Prevention ) published in its Morbidity and Mortality Weekly Report ( MMWR ) that there were five casesall gay men in Los Angelesof pneumocystis carinii pneumonia ( PCP ). Two of the men had died.
That report set the stage for the HIV/AIDS epidemic in the United States and around the world. In the 35 years since, about 71 million have been infected with HIV worldwide, while about 34 million have died from complications of the disease. Tens of thousands mobilized to call for significant action from politicians, health providers, drug companies and myriad stakeholders.
"Looking back on all we accomplished together is equal parts heartbreaking and uplifting," said GMHC ( Gay Men's Health Crisis ) CEO Kelsie Louie. "When we begged for help in the places that had the ability to provide assistance, the doors were closed because fear and hysteria ruled the day. Our response was simple; we will do it ourselvesand we did."
Among those who mobilized was writer and activist Sean Strub. Strub, the founder of POZ Magazine, among other publications, was a longtime member of ACT UP New York and took part in a number of political and creative endeavors over the years. He was the first HIV-positive candidate to run for federal office, for example, and also produced the play The Night Larry Kramer Kissed Me in the early 1990s. Strub was responsible for convincing playwright Tennessee Williams to sign the first fundraising letter for the Human Rights Campaign Fund ( now HRC ).
He has long been critical of the evolution of HIV/AIDS activism, especially of the movement from protest action to what he has called a "benefactor-victim" paradigm of fundraising. Strub now lives in Pennsylvania, and focuses his activism work on laws that criminalize HIV transmission. He runs an inn along with his partner and was recently elected mayor of the town of Milford.
As part of our AIDS @ 35 series, Windy City Times interviewed Strub via email.
Windy City Times: Give a comment about being elected mayor of Milford and what it means to you. Also, can you briefly summarize the process of how the mayor is selected there?
Sean Strub: Milford is a small villageabout 1,100 residentsbut it is the county seat for Pike County, Pennsylvania, and the "front door" to this northeast Pennsylvania, Upper Delaware River Valley region. We are governed by an elected seven-member borough council and a mayor; our mayor recently resigned and the council had the responsibility to fill the vacancy. Several council members asked if I would put my name in and I did and was appointed to fill the rest of the unexpired term. I'll serve through 2017 unless I run for the office in November 2017.
The mayor's most important responsibility is to oversee the police department, but I also am the tiebreaker for the council and have ceremonial functions. Today, I was the ribbon-cutter at the opening of our farmer's market and tomorrow [Memorial Day], I'll be marching with the Vietnam Veterans of America.
Small towns like Milford, all over the country, have been devastated by the last 40 years of state and federal policies that have prioritized Wall Street over Main Street. Big-box retail, in particular, has been devastating, but also the dramatic erosion of the middle class, degradation of our public schools and other factors have forced many small towns to struggle to maintain their quality of life. That's what interests me about serving as mayor, to see if we can find ways to maintain or improve our quality of life, protect the economic viability of our central business district and have the most local unit of government play a constructive role in addressing addiction, homelessness, underemployment and other challenges in our region.
I didn't aspire to be mayor of a tiny townthe last time I ran for office it was an unsuccessful bid for the U.S. Congressbut I am looking forward to the challenges it presents and experimenting to find strategies that work for Milford.
WCT: What accounts for your interest in politics?
Strub: I grew up in Iowa City in the 1960s and early '70s, where I was immersed in anti-war activism, the women's movement and, to a lesser extent, the civil-rights movement. I never knew a time as a young person when politics did not interest me or when I did not feel that it was my responsibility to be informed and participate in whatever ways I could. Perhaps some of that drive comes from the sense of being an outsider, growing up gay. I've also wondered if being bullied while young might translate into developing a greater capacity for empathy that translates into political action. I see that in others and suspect it has played a role in my interest in social-justice work. And, of course, the epidemic largely has defined my adult life and that work, particularly around criminalization of the most vulnerable populationsparticularly people living with HIVcontinues to be the most satisfying part of my work.
WCT: What does this new post mean for your activism?
Strub: I wish that every national "policy leader" and all the VIPs and big donors and executive directors also had the experience of working at the neighborhood or community level, trying to integrate the values we espouse into the practical day-to-day mechanics of local governance. Twenty years ago, when Xavier [Morales, Strub's partner] and I mostly left the city for life in a rural area that is very conservative culturally, I didn't anticipate how much I would learn and grow from getting to know people I would never have known otherwise. It's given me a better understanding of the rage driving the support for [Donald] Trump and a perspective on how national progressive political discourse can sound elitist or even irrelevant to people on the ground trying to salvage a kid from a dangerous home environment, or improve a school system, or deliver services without further taxing people who are already barely getting by.
WCT: How do you think the nation's understanding of HIV/AIDS has evolved in the 35 years since the disease really came to the spotlight?
Strub: The country went from seeing people with AIDS through the lens of their likely death, one that could be horrific and probably would happen soon, through now seeing people through the likelihood of our survival. And surviving longer means, to much of society, that we are around longer to infect others, so we become defined as viral vectors, potential infectors, an inherently dangerous population that needs to be tracked down, tested, listed, identified, reported, followed and, in many cases, criminalized.
The LGBT community, at one time, accepted the epidemic as a collective responsibility; today they are mostly ( but not entirely ) gone from the epidemic. I don't think it is a coincidence that the institutional LGBT community's abandonment of the epidemic has roughly paralleled the epidemic becoming more about the very young, women and people of color. HIV-related stigma today is worse than it has ever been, in my opinion, and some of the worst offenders are gay men themselves. This was something I never could have imagined years ago. But then I couldn't imagine even surviving, either.
WCT: Do you think we will or can ever have an era of engaged and ramped-up HIV/AIDS activism as in the late '80s and early '90s? You've said that the gay community was more effective when it was more of an "outsider." Is it possible to recapture that energy? Is it necessary?
Strub: We desperately need that energy, but we need it as part of an intersectional movement that simultaneously addresses racism, misogyny, homophobia, economic injustice, drug and sex work policy and penal system reform. The initial AIDS activism was to a large extent a type of identity politics ( survival-driven, to be sure, but still based around identity ) and for most gay white men, AIDS was a singular challenge. Their skin color and gender provided a lot of privilege and that privilege was in many cases leveraged in effective ways, but in a narrow way.
I want to see more AIDS activismor HIV activismbut I want to see it in partnership and as part of a broader campaign for justice in the country. We need to be fighting for people who are unjustly incarcerated, for people of color, for people living in poverty just as hard as we fight for people with HIV. I am hopeful that we are, as a community, more sophisticated than we were years ago. That isn't to diminish the work years ago, when it was also for many of us driven by an effort to survive, but our work today can't exist in isolation to the extent it did for most of us in the late '80s and early '90s.
We'll never treat our way out of the epidemic. And we can't effectively combat stigma until we focus on empowering the stigmatized and understand stigma as something that isn't just about having HIV, or being a racial minority, or having a criminal record; stigma is a way of seeing the world for many and we need to change that on a fundamental level. But we do so not by focusing on the stigmatizers, but by focusing on the stigmatized.
WCT: Do you think we will make strides in "decriminalizing" HIV-transmission, which has been the focus of much of your activism?
Strub: Seven or eight years ago, when I began to focus so intensely on HIV criminalization reform, many ( including those who were sympathetic ) told me it was a lost cause and we would never make much progress. Today we have a robust and rapidly growing movementone that is increasingly arm-in-arm with those fighting racism and the incarceral society, advocating for sex work and drug policy change, and both Iowa and Colorado have changed their statutes.
Efforts are underway in at least another 20 statesall in various stagesbut we are seeing the fruit of those organizing efforts in the new voices being heard, alliances being created and our success in stopping virtually every measure introduced in the last six years that would have further criminalized people living with HIV. Our second national HIV is Not a Crime conference, this year co-produced with the Positive Women's Network, was held mid-May at the University of Alabama/Huntsville and we had nearly 300 attendees, almost twice as many as at the first conference held in 2014 at Grinnell College. So, yeah, we've made many strides and there are many more to come. Stay tuned.
WCT: You have been critical of PrEP in the past. More people are using it now; have your thoughts about PrEP changed at all? [Pre-exposure prophylaxis ( or PrEP ) is when people at very high risk for HIV take a medication daily to lower their chances of getting infected.]
Strub: My criticism hasn't been about PrEP per se. I've long advocated its availability to those who will not or cannot use condoms. My criticism has been on promoting it widely as a public health intervention, especially when that is done at the expense of other prevention strategies. My prediction about PrEP remains the same, which is that it is likely to follow a trajectory similar to what has happened with unwanted pregnancies in the last 15 years. They have dropped dramatically among white and affluent women and risen significantly among women of color and those living in poverty. PrEP will reduce HIV transmission among some groups, mostly those of relative privilege, and we'll see continued increase in transmission rates amongst the most disadvantaged. You can't focus mostly or just on bio-medicalization of HIV prevention or unwanted pregnancies. The reasons behind them are more complex and need more complex interventions than a pill. But we live in a society that likes easy answers, especially if they come in a pill or are a product someone is marketing.
WCT: What do we have to do in order to preserve the stories and accounts of HIV/AIDS when collective memory has become, for many reasons ( internet, etc. ) ephemeral?
Strub: I urge people to write their stories, record them, videotape them, because as time passes there are fewer and fewer of us who were around on the frontlines, from the beginning. It is important that we leave a record of what we witnessed and experienced. As people age and die, more private collections of contemporaneous documents will emerge and I think, in time, the story of the epidemic through the '80s and '90s may be seen quite differently than how it has been fixed in popular culture today. There were heroes, to be sure, but there were also villains, including within our own community and, in time, they may be held to account. But for the truth to be told, we all have to tell our own stories and get them documented so they are available for the research and analysis years from now.
What I think is the most important missing piece are the stories of "average" people; those men and women who were never quoted, aren't famous, didn't build careers within the epidemic, but whose lives were turned upside down and changed in profound ways by the epidemic. I'm not disparaging those who are well-known or found careers in the epidemicI'm one of thembut there won't be any problem getting our stories told. I traveled to more than 80 events in 27 states promoting my book, Body Counts. In almost every city, from Kalamazoo to Shreveport, from Cedar Rapids to Spokane, I met peoplemen and women, HIV-positive and HIV-negativewho had amazing stories from those early days in their communities. Their stories are what we are at risk of losing and that would be a terrible shame. I encourage HIV service providers, local historical museums and others to commission oral historiesmaybe hire young people with HIV to conduct the interviewsto get those stories documented.
For HIV/AIDS statistics, see www.who.int/gho/hiv/en/ .