THE DAY IN 2011 THAT I WENT TO THE OFFICE of the city clerk in lower Manhattan with my partner Dustin to register for our domestic partnership was coincidentally also the first day same-sex partners were allowed to register for marriage in the state of New York. A reporter was on hand, hoping to get a quote. As a prompt, she told us that the state’s marital forms had not been updated: Any couple registering that day would be required to designate one person as the man, and the other, the woman. Did we have any reaction?
“We’re not here for that,” we said, smiling, as we passed her, and then we found we had to keep saying it at every point of the process, to all of the helpful clerks at each step who reminded us that we could register to marry instead. We thanked them and continued on to get our partnership. We had discussed marriage and decided it wasn’t for us, not yet, maybe not ever. A domestic partnership suited us. We joked a little afterward about which one of us would have been the man, which the woman, but without question, I had the uncanny sense of entering another world, one in which government officials recognized our relationship in a friendly, helpful way, even if we weren’t going to marry—and even if the forms weren’t quite ready for the many people like me about to get married. I remember thinking: This is the future.
I’ve lived through several of these moments. In 1995, for example, when highly active antiretroviral therapy, or what became known as the “AIDS cocktail,” was approved by the Food and Drug Administration, and then later entered the lives of my friends with HIV or AIDS, I went from worrying if they were going to live, to worrying that they still smoked too much now that they were going to live. Or in 2007, when my sister, who’s a teacher, invited me to speak to her high school’s Gay-Straight Alliance, and the students there asked me why I didn’t come out in high school. I had to explain that such an act was unimaginable for a boy from Maine in 1984—as was anything like a student Gay-Straight Alliance—and I could tell my past was as unimaginable to them as their present was to me.
Or in 2008, when the Democratic National Convention adopted “Health care is a right” into its platform for the presidency. I remembered staffing a volunteer table for ACT UP in San Francisco’s Castro neighborhood in 1991, on the corner of Castro and 18th Street, and on my table were posters, stickers, and t-shirts that bore the same slogan in all caps—ACT UP slogan house style.
I wore one of those shirts to model for passers-by. People walked by me, uncomfortably most of the time, but on occasion, someone would come up and ask for a sticker or a t-shirt, and it felt like a little victory. This presidential platform moment, while huge, felt strangely small at the same time—still not enough.
ACT UP was trying to explain to Americans that AIDS could affect all of us, that health care that ended once your disease was expensive could affect more than gay men with HIV or AIDS. We were trying to tell them about the future—a future they didn’t yet see and would be forced to accept if they failed to act. But there was an epidemic of denial happening alongside AIDS, the belief that you could not get AIDS, not really, unless you were gay—and that you would never need the protections people with HIV needed. In 1990, health care was not something most people feared losing, and employer-based health care was not yet considered a business cost too high to bear. Blue Cross Blue Shield was not yet run for profit. But we had seen our friends and lovers abandoned by doctors and shunned by hospitals, and as we knew only too well, drug companies were run for profit, and there were drugs that needed to be tested in order for people with HIV to survive. The number of people infected in 1990 seemed too low to the people running spreadsheets at drug companies, and so they weren’t doing the tests on drugs that they could. There was no upside for them in making drugs that they believed would only benefit perhaps 50,000 people. This is a fate any American with a rare disease has faced—not just people with HIV—they quickly learn that their lives are the cost of doing business.
As of 2013, according to the World Health Organization, 35 million people were estimated to be living with HIV or AIDS globally, and 39 million have died from the disease. The epidemic of denial won, and now everyone knows there is money in the making of drugs for AIDS. There is now, sadly, a great deal of money in it. And, as some of my old ACT UP friends have noted, there is now no money in curing it. Instead, there is PrEP, the one-pill HIV, pre-exposure prophylaxis, which promises condom-free sex, if you can afford it, at a price tag for the uninsured of $8,000 to $14,000 a year.
WHAT ARE THE IMPLICATIONS OF WHAT YOU’VE INVENTED? That’s a question I often ask my students in fiction writing, as a way to get them to generate plots organically out of the little scenes that first come to them. So what are the implications of what we’ve invented?
For many Americans, marriage equality represents a capstone “here at last” moment for gay people, but it really is more of a beginning.
I live in a world today that I never would have imagined possible. I can serve in the military as openly gay, if I wanted. I can join my friends as they passionately, freely, and publicly debate the merits and downsides of the sex life that PrEP makes possible. I can choose from male, female, and “custom,” as well as my preferred pronoun, on my Facebook profile, where I get notices about the upcoming reunion of ACT UP SF alongside updates about my upcoming high school reunion. And, yes, I can marry in 37 states.
The pursuit of marriage equality has changed us. We privilege the life of couples over those who might never marry in a way we never did before. For many Americans, marriage equality represents a capstone “here at last” moment for gay people, but we know it really is more of a beginning. It is still legal to be fired for being gay or transgender in more than half of U.S. states. Those openly gay soldiers, should they marry, can be denied shared retirement benefits for their spouses in states where marriage equality is not (yet) the law. Increased trans visibility and the conversation around gender identities have generated more awareness than ever before about trans lives, and has resulted, for example, in advances, such as the inclusion of trans girls in the Girl Scouts. Yet terrible violence against trans people continues, often as brutal murders, many of them left unsolved, should they even be investigated, especially against trans people of color. Religious conservatives, meanwhile, are busy using the courts and legislatures to try to deny us the rights we have only recently gained—claiming that upholding the laws that have been passed oppresses their religious freedom, and that they must be allowed the liberty of their bigotry.
And so it is with a very strange sort of ambivalence that I await news regarding marriage from the Supreme Court. I feel we are at the edge of another one of those uncanny thresholds—that the future is sneaking up on me again. At my most pessimistic, I fear that this decision, along with the appearance of PrEP, is a sign of some sort of Freudian repetition cycle the whole country is in, in which marriage equality is always being fought for and decided, and AIDS is always the ground for advances in treatment instead of a cure—all while these other very serious issues also need attention, and we fight forever over the same inch of ground.