Sean Strub is an activist, entrepreneur, writer, advocate for LGBT rights and for those living with HIV/AIDS; he is the founder of POZ Magazine, Mamm, Real Health, and Milford Magazine; he has put a giant condom over a congressman’s house as part of a protest and has also run for congress himself. He is an AIDS survivor of 25 years and an aficionado of historic preservation. He is Executive Director of the SERO Project, a non-profit advocacy organization combating HIV criminalization. And here at ASCNYC, we are proud to be honoring him as a “Positive Changemaker” at our Unmask AIDS gala.
Sean, where did you grow up? What was your family like?
I was born in Iowa City, Iowa, the third of six kids. We lived on a small acreage in the country, with sheep and horses, until I was nine years old, then we moved into a university neighborhood in Iowa City.
You came of age during the sixties and seventies. What was that era like for you?
The political assassinations of the 60s and the Vietnam War defined my childhood. When I was nine I was convinced that electing Eugene McCarthy as President (in 1968) was our only hope. I plastered my black Schwinn one-speed bicycle with blue and white McCarthy daisy stickers. That same year, I wore a black armband to school and got sent home by the principal. I would sneak out of the house at night to watch the student riots protesting the war, and refused to say the Pledge of Allegiance.
The first sense of communal political action I ever felt was singing “We Shall Overcome” during the November 15, 1968, Moratorium to End the War in Vietnam march.
My emerging political consciousness, in addition to the anti-war protests, was also influenced greatly by feminism and the fight for reproductive rights. I became active in campaigns for women running for office and developed a consciousness as a feminist long before I recognized myself as homosexual. It was during college that I first started getting interested in and involved in LGBT activism, especially after the 1979 March on Washington for LGBT rights.
You were in your twenties when the HIV epidemic started. Some people feel invincible at that age. Did the beginnings of the epidemic change that?
The first few years, 1981 to 1984, AIDS felt temporary, like it would go away any day once a cure was found. Then around 1984, I realized my life had been hijacked by the epidemic as I was absorbed into the community’s activism and advocacy. In my late teens and early twenties I was busy and doing interesting things, but didn’t have any kind of long-term plan or explicit ambition. I responded to what I felt I had to do, rather than what I might have wanted to do. I loved antiques and architecture and historic preservation; absent the epidemic I might have made a career in that kind of a field, although I’m sure I would have still been involved politically.
You were diagnosed with HIV in 1985. Was the diagnosis a surprise?
Not a surprise. I knew whatever this disease was that it had something to do with me from the beginning, when the five guys who died in Los Angeles were linked sexually. They had shared three initial symptoms—weight loss, swollen lymph glands and night sweats—that I was already experiencing. I got tested not long after the test came out and while it was expected in one way, it was still a shock and surprise. Most of my friends and family were supportive, but not all. There were some friends who dropped me and that hurt then. Still does. Lots of stigma and offensive incidents, but mostly those came from fear and ignorance rather than hatred or judgment.
It must have been unbearable to see so many people close to you die from the virus.
I’m not sure what it feels like not to be surrounded with constant loss. Since moving to New York in 1979, I’ve had six roommates; five are dead. I’ve lost two business partners and a dozen employees. The partner I expected to spend the rest of my life with died in 1988; an untold number of other boyfriends and acquaintances died. I couldn’t begin to count the number. People who were near the epicenter of the epidemic reacted in different ways, some were drawn to it and became activists and caregivers, others were repelled by it and went away, emotionally, sometimes physically.
Treatment for HIV didn’t appear until well after you were diagnosed. What was it like to go from dying of AIDS to living with AIDS? How did it change your work?
I was always living with AIDS, even when I didn’t expect to live much longer, so that didn’t really mark the difference. The difference was the expectations of a future. The tremendous sense of urgency that marked my life through the 80s and mid 90s, that I had to hurry up and achieve whatever it was that I was going to achieve on this earth quickly, before I died, went away and I became more accepting of each day, of the reality that we all have only a short time and that my life purpose isn’t to solve anything but simply to live it as best as I can.
You’ve said that HIV stigma is worse today than ever. How?
The “AIDS community” is not as cohesive or broad-based as it once was, so there isn’t as much support or as much of a loving embrace for those who are infected that there was once. The disease today is seen in much more racial terms and has exposed the racism inherent in the culture, including in the GLBT community. When people with AIDS were seen as the walking dead, there was some measure of sympathy. Today we are increasingly viewed solely or principally as viral vectors, potential infectors. Some people see our longer lifespan as meaning we’re around longer to infect others. The epidemic isn’t in the media as much and when it is, people with HIV are often depicted as predators, AIDS monsters or a drag on society.
Combating this image of “AIDS monsters” is the mission of the SERO Project, a nonprofit advocacy organization you started dedicated to battling HIV-related stigma surrounding HIV criminalization. Why was HIV criminalization implemented? Why is it wrong?
HIV specific criminal statutes were passed ostensibly to slow transmission of the virus, but the research shows they don’t do that and a growing body of research shows they actually contribute to further spread of HIV. It is wrong because creating a viral underclass in the law—with different criminal statutes for different parts of the population, based on immutable characteristics—is wrong, whether the immutable characteristic is based on gender, sex, race, genetic makeup or viral status.
It is also wrong because it is horrific public health policy, discouraging people from getting tested, disclosing or accessing care. You can’t be prosecuted if you don’t know your HIV status; so it has become “take the test and risk arrest”. Yet we know most new infections are transmitted by people who do not know they have HIV. Criminalization undercuts the most basic message about sexual health—that we all must ultimately be responsible for ourselves—by creating a disproportionate responsibility for safer sex and creating an illusion of safety for those who are negative or haven’t gotten tested. It also imposes a horrific injustice on those prosecuted. People with HIV are getting decades-long sentences for not disclosing even when they use condoms, have an undetectable viral load and don’t transmit HIV. It is an outrageous injustice.
You are also the founder of multiple magazines: POZ, Mamm, Real Health, and Milford Magazine. What motivated you to start your first magazine, POZ?
Everything in the media and popular culture defined AIDS as a death sentence, “inevitably fatal”, “dread disease”, “100% fatal”, “terminal illness”, “no hope for survival”, “without a cure”. While my life was immersed in loss, I was also surrounded by people with AIDS who were leading vital lives, falling in love and breaking up, getting promoted and starting businesses, loving relationships.
I wanted POZ to help people with HIV see the life they could live today, even while managing the burden and impositions and pain of a life-threatening illness. I also wanted to create the concept of an “AIDS survivor”, which was considered an oxymoron at the time. Yet a woman who lived five years past a breast cancer diagnosis was considered a “survivor”; how long did people with HIV have to live before they were considered survivors? That’s what we sought to accomplish with POZ.
You’ve done a lot of things in your life, from putting a condom over a senator’s house to owning a hotel to writing books. What are you most proud of?
The people I’ve helped mentor and create careers and better lives for themselves and others. I’m proud of the writers, editors, photographers and illustrators who created POZ. The resilience of people with HIV, most of whom must manage many burdens in life; HIV is just one on a hierarchy of oppressions, something those who are privileged often don’t understand.
Oh, so many things. But I think combating criminalization, and milder forms of stigma, is critical. We have wasted a lot of time and money on anti-stigma efforts that are ineffective; what we know works is empowerment of people with HIV and that’s where we need to return if we are serious about reducing HIV-related stigma.