HIV is no longer a fashionable cause. It can no longer be seen in singular terms and therefore divorced from the intersecting realities of racism, homophobia, sexphobia, poverty, addiction, mental illness, homelessness, and other factors that drive the epidemic.
As an early AIDS activist and a long-term survivor, Sean Strub has taken on many roles throughout the HIV epidemic. In 1990, he became the first candidate openly living with HIV to run for Congress. He was among the ACT UP protesters in 1992 who placed a giant condom over the home of then-Republican U.S. Senator Jesse Helms. Strub founded POZ magazine (like POSITIVELY AWARE, published for people living with HIV), and produced an off-Broadway play, The Night Larry Kramer Kissed Me. At 60, he is executive director of The Sero Project, a nationwide network of people living with HIV and their allies, combatting stigma and social injustice. Strub recently took time out to talk about HIV criminalization, and what it’s like to be mayor of a Pennsylvania town, population 974.
How did the Sero Project come about?
I have been focused on helping to support and strengthen PLHIV networks for many years. It was clear that the voices of people living with HIV [PLHIV] were what would drive the anti-criminalization movement. When NAPWA [National Association of People With AIDS] shut down, it seemed like a good time to start a network focused on supporting other networks and combatting criminalization. That’s what Sero does. Our entire board is comprised of PLHIV as is most of our staff.
How has HIV stigma changed over the last 30 years, and what is the link between stigma and criminalization?
Many people remember when one had to wear a spacesuit to visit someone with HIV in the hospital, or when people were afraid to shake hands with someone with HIV or go to a gay restaurant or whatever. Since most people know more about HIV today, and that fear of casual contagion isn’t as bad, people think stigma has lessened.
But stigma, as experienced by the stigmatized, is about much more than fear of casual contagion. It is about having our moral worth judged when someone finds out we have HIV, about being marginalized and “othered,” having our words discounted before they are even spoken. By those measures, stigma is worse today than ever before.
We don’t have a broad LGBT and HIV community that recognizes the epidemic as a collective responsibility, as we once did. HIV is no longer a fashionable cause. It can no longer be seen in singular terms and therefore divorced from the intersecting realities of racism, homophobia, sexphobia, poverty, addiction, mental illness, homelessness, and other factors that drive the epidemic. Very important, a diagnosis is much more isolating today.
That’s partly because those newly diagnosed can choose to keep it a secret; they don’t have to assume that others will ultimately find out because they will lose weight or show other symptoms. Years ago, when diagnosed, one worried about survival, not the long-term impact on one’s career. That isolation denies a person of peer support, becoming part of a community, and fuels loneliness.
What was your biggest takeaway from the HIV Is Not a Crime 3 conference in Indianapolis in June?
The movement to end HIV criminalization is growing rapidly and has become a defining cause in HIV policy work. Leaders and agencies who aren’t contributing to anti-criminalization work are not serious about addressing stigma, not serious about HIV prevention, and are not serious about the quality of life for and rights of PLHIV.
What I found especially exciting is the huge number of new activists finding their voices through this work, especially young people. I alternate between feeling weird about being one of the oldest in the room—I turned 60 in May—and being so thrilled to see all the new energy, as well as the interest in the history that brought us to this point.
We have seen at the HINAC gatherings how HIV criminalization is a crossroads for work in a wide range of intersecting social justice and human rights movements. The HIV criminalization reform work has created stronger ties with those combatting racism, poverty and mass incarceration, those working for drug and commercial sex policy reform, those fighting for the rights of people of trans experience, immigrants, migrants, and those who are incarcerated.
If there’s anyone who thinks of themselves as a “single issue” activist on HIV criminalization, they just don’t get what it is that we are trying to accomplish. HIV criminalization is a point of entry issue into radical changes to improve the lives of PLHIV and affected communities. I use the word “radical” intentionally, because the vision we have is very different than the reality so many of us must live, but it is not a fantasy. Even amidst the nightmare of the Trump administration, we are making tremendous progress and laying a strong foundation for change.
What do you see as the biggest challenges or opportunities facing the HIV community that the Sero Project can help address and raise awareness about?
1. HIV service and policy organizations and leadership that talk the talk about PLHIV empowerment but don’t walk the walk;
2. Inspiring PLHIV to understand and take hold of the tremendous power they have, as individuals, to affect their lives and the lives of other PLHIV. I think often of the quote sometimes attributed to Harriet Tubman, in reference to her work freeing enslaved people, “I could have saved a thousand more if they had only known they were slaves”;
3. Getting those who are newly diagnosed connected to PLHIV social, recreational, educational, and advocacy networks.
How can people get involved or find out more?
Get connected with a PLHIV network [seroproject.com/state-networks] or start one. Sero is glad to provide guidance to anyone interested in starting a network in their community.
What is a normal day for you as mayor of Milford, Pennsylvania?
Hah, every day is different. But I’m usually up around 6 am, do the New York Times mini-crossword puzzle on my phone—it’s easy, but I keep trying to better my best time, which is 56 seconds—and have my first calls or meetings around 7:30. In a given day, I’m involved with Sero work, obviously, speaking with legislators, activists, and policy leaders. I’m lucky to have a great Sero team, with Cindy Stine here in Milford, Robert Suttle and Ken Pinkela in New York, Tami Haught in Iowa, Kamaria Laffrey in Florida, and Allison Nichol in Washington.
I’ve also got a great team with my mayoral work in Milford as well, including a supportive borough council and dedicated borough employees and many volunteers. Right now we’re updating our comprehensive plan, organizing a big benefit for our garden club, and getting started on a major streetscape improvement project. As mayor, I oversee the police department, which is interesting and sometimes challenging, but has given me a greater appreciation for what community policing can be. One of the first priorities for our new chief was to get a police bicycle so our officers can patrol on bikes. Finally, Xavier Morales, my partner, my sister Megan and I run a small hotel and restaurant in Milford and I spend a lot of time on that as well. It isn’t unusual to see me bussing dishes when the restaurant gets unexpectedly slammed or changing light bulbs or doing other maintenance work. Working with my hands at the hotel is therapeutic for me and I enjoy it.
Anything else you’d like people to know about?
Only that as awful and dangerous as the Trump presidency has been, don’t personalize our battle too much to being just about the revolting person Donald Trump has shown himself to be. We all want him to go and the sooner the better, but the truth is that he exploited an ugly, racist, dangerous, and greedy undercurrent in the nation that will still be there after he is gone. That doesn’t mean everyone who voted for him is all of those things—I know that isn’t the case—but it does mean the sentiment, the distorted values, ignorance, and intolerance that elected him isn’t going away when he does.
The real change—and I believe the most important work any of us can do—is in our neighborhoods and with our families and friends. It might not be glamorous, but the grassroots—the real grassroots—is where we need to create change, neighbor-to-neighbor. That’s how I got elected mayor in a community that also went for Trump.
The kind of change we need in our politics, in our society, and in the world will come from the bottom up, with millions of people working in small ways on their home turf, not from the top down.