On March 5, 1995, the day I turned 30, I admitted my then-partner Shane Sawick into the hospital. He would not come out alive, dying just two weeks later, on March 22. While AIDS was the war he battled, he was ultimately done in by a skirmish with PML (Progressive Multifocal Leukoencephalopathy), a rare but usually fatal disease, which quickly took away Shane’s ability to speak, move, or even blink at will, though his brain continued to think, and process, and feel. It was devastating to watch a loved one undergo such a debilitating experience, and yet that act, of being both lover and caregiver, thoroughly transformed me as a human being. Indeed, I would not be the husband, father, writer, or person that I am were it not for that period of crisis during which my partner and friends died. As we head towards World AIDS Day, I find it perplexing that few seem willing to embrace, or even mention, the epidemic which so greatly impacted and altered the LGBT community. What is it about that era that frightens us so?
The easy answer might be that disease and death make people uncomfortable, which, to some degree, is understandable. Prior to Shane’s death, my best friend of eight years and I were inseparable (I’ll call him Pete.) At the time, I couldn’t have imagined a better friend. Pete made me laugh, kept me company, and ushered me through my West Hollywood “coming out.” Once Shane got sick, however, Pete disappeared. He never called, or came to visit us in the hospital, despite knowing that I was there 24/7. Whenever queried by friends as to his absence, Pete would say, “Oh, you know–me and hospitals. I just don’t like the idea of sickness.”
It wasn’t until the day of Shane’s memorial that I next saw Pete. He came up, noting “Great service!,” before the next words came out of his mouth: “Wanna hit Happy Hour later?” Needless to say, I chose to end that friendship, as well as others in which people could not grasp the emotional magnitude of what had happened to me, and others like me. The depth of my experiences caused a change within, which required a new support system willing and able to tackle the “hard stuff,” no matter how unpleasant.
For some, the era of losing friends and loved ones has been difficult to revisit, due to the emotional toll taken. Many have gone to great lengths to separate themselves from the pain, moving from the most-hit urban centers to smaller, more rural towns. Others have gone into emotional hiding, losing themselves in drug or drink, or in simply shutting down, so as not to feel the ache of such loss. And some have, by necessity, focused on rebuilding their broken circle of friends.
New causes, such as marriage equality, have replaced AIDS as our community’s priority, and it is hard to argue that rallying for wedding cake isn’t more fun that protesting for HIV drugs. Still, we should not have to choose between the two.
These days, activism for many means little more than clicking “like” on a Facebook post. While thousands stepped into the streets in the aftermath of Prop 8, we’ve not seen anything on that scale for HIV/AIDS in years. At what point did we become complacent? Is having a drug that makes the disease “manageable” really all we want? What happened to a cure–or a vaccine?
Today, people still die from AIDS. While drug advancements have substantially decreased that number, it has also created the false-belief that contracting the disease is essentially meaningless. To some, taking one pill a day is an easy trade-off to having to wear condoms.
Most disturbing, however, is the sheer number to whom AIDS just doesn’t matter, having relegated it to a page in history. When I mention having lost a partner or friends, I’m most often met with a blank stare or a cursory nod, with no real emotional acknowledgement of what that time meant, and continues to mean.
During the AIDS crisis, the LGBT community rose to the occasion, stepping in to take care of our own when the government, pharmaceutical companies, and other organizations couldn’t–or wouldn’t. LGBT people exhibited incredible bravery, tackling huge monoliths with acts of daring creativity and passion. Were it not for our take-no-prisoners approach, we would not have the HIV drugs we do today.
The crisis temporarily brought together both genders, as women stepped into vacant leadership roles and helped those stricken by acting as caregivers. Today, that gender divide has returned, with little reciprocity from gay men for the causes dear to lesbians, such as breast or cervical cancer. In many ways, we’ve gone back to being strangers, with a debt left unpaid.
Other communities, devastated by tragedy, have managed to turn such markers into rallying cries, and the LGBT community must find a way to do the same with AIDS. Just as the Jewish people dealt with the Holocaust, and the African American community responded to slavery and the civil rights struggle, so too must our community find a way to embrace that era, fully honoring both those we lost and what we gained.
For we did gain much. We learned that, far from being the weak and passive individuals many of us had been stereotyped, we actually had strength, passion, and guts, and we fully demonstrated that to the world. We took on “the powers that be” and created real, tangible change. We literally bloodied ourselves for the cause, and yet today, speaking of AIDS feels almost taboo.
Does that have anything to do with the disease being sexually transmitted? Having worked so hard to combat the myth that being gay is to be “sick,” did the emergence of a sexually transmitted disease take us back to a place of shame? Does that shame still linger?
To be clear, I am not remotely nostalgic for the days of the AIDS crisis. I lost too many, and it hurt too much. But at the same time, I’m thankful that I was able to play a part in helping to educate others about HIV, through my work at AIDS Project Los Angeles. I’m grateful to my dear friends who allowed me to be with them during their final days. I’m profoundly changed, for the better, for having ushered my partner Shane to his death. And I’m forever in awe of the efforts our community took to respond to the crisis in unimaginably creative and lasting, impactful ways.
I just wished others cared as well.
Kergan Edwards-Stout’s debut novel, Songs for the New Depression, was loosely inspired by his partner, Shane Sawick, and his experiences during the AIDS crisis. It won the 2012 Next Generation Indie Book Award in the LGBTQ category, and was shortlisted for the Independent Literary Awards in the same category.
PLEASE DE-FRIEND ME.
If you plan to vote for Mitt Romney, you are putting a nail into my civil rights coffin, and I’d rather not have friends who think I deserve anything less than equal treatment under the law. Romney supports DOMA (which directly and negatively impacts me, restricting my partner Russ, our kids, and my federal protections and tax benefits under the law), and has noted his support for an anti-marriage equality amendment as well. While you may see your vote for him as one about the economy (and we can debate who’d be better for that until the cows come home), what you INTEND by your vote really doesn’t matter. Your vote means that you are supporting someone who not only thinks I’m not equal to you, but who works vigorously to ensure my “less-than” legal status. Your vote for him means that you are totally fine with me being treated with disrespect.
Now, you may see this as an indication that I am being too “single minded”, and I’ll admit that when you’re denied even the simplest of human considerations, it makes it difficult to look beyond that. But this is about much more than my treatment under the law. Who I am and what I believe passionately in are also things which Romney discounts. I believe in full and fair treatment of ALL people, but Romney believes that women should not receive equal pay for equal work. I believe we need to take care of our earth, even if it means tightening our belts, but Romney favors further deregulation over environmental concerns. I think it is our duty to support things like art and culture (I view them as essential), but Romney disparages the role these play in enriching our lives; he sees them as extraneous and will cut public funding. I believe, just as education is a right, healthcare is as well, but Romney wants to abolish the Affordable Care Act. I care about those less fortunate and the elderly, and think it is our collective responsibility to ensure their well-being, but in Romney’s eyes, these people are victims and moochers. In short, who I am isn’t just who I love, it is the things I feel passionately about. And Romney stands against almost all of them.
BOTTOM LINE: I don’t care who you are–whether you are my relation by blood or a longtime acquaintance, I don’t want “friends” who don’t think I’m as good as they are. I want friends who value me, who see my worth as a human being, and who fully support my equal protections under the law. So, if you’re voting for Romney, whether you follow me on twitter or facebook, please de-friend me. You won’t hurt my feelings. I won’t cause a big stink. In fact, you’ll be creating space in my life for others to come in who do feel that my being here on the planet matters.
I’M NOT INTERESTED IN DEBATING THIS. PLEASE RESPECT MY WISHES.
The LGBT community would be nothing were it not for the many and varied grassroots efforts which have sprung up throughout our history, spurring us forward in the name of equality. While our national organizations may serve a purpose in terms of presence and lobbying, in my view, most of the monumental changes have occurred as the result of groups outside the mainstream. Whether it be Lt. Dan Choi and GetEqual helping to bring about an end to DADT, or ACT-UP in demanding resources and awareness during the AIDS epidemic, or the small but laser-like focus of the American Foundation for Equal Rights in working to bring marriage equality to California, these smaller groups have often been able to affect change where our national organizations can’t–or won’t.
I came of age during the days of Queer Nation and ACT-UP, and every rally, march, or benefit I’ve attended or organized has helped instill in me the belief that power, indeed, lies with the people. Last year’s Occupy movement further reinforced that conviction: on a local level, a band of committed individuals can move mountains.
In February, I wrote about a planned “2012 Worldwide LGBT Civil Rights March”, slated for April 21. The idea for the march had sprung from a facebook group called Let’s Reach 1 Million People Campaign, and the group’s founder and lead organizer, Joseph C. Knudson, asked if I would write an article about their efforts. I agreed, but as I began to look more closely at the event, I realized that I couldn’t deliver the promotional piece they’d desired. The article, What if They Threw a Worldwide LGBT Equality March, and No One Came?, noted my concerns around the planning associated with the effort, and questioned if the event was truly designed for success.
The article prompted a firestorm of protest in the comment sections on both Huffington Post and Bilerico Project, primarily from those organizing the event, and included accusations of inaccuracies, questions about my motives, personal attacks, and even resulted in a rant about me on Knudson’s blog. And yet, despite each of their energetic volleys, the questions I raised were never fully answered by the event organizers.
Instead, I and others with questions were simply urged to read the group’s disclosure document, as if the answers to each of our varied questions could be found in that single document. While some have speculated that this event was simply a promotional effort, designed to draw attention to a book Knudson had written, it was assured time and again that the Worldwide LGBT Equality March had no connection to his personal endeavors. But where, you might ask, is the group’s disclosure document located? Not on their website, as one would expect. Instead, a link redirects you to Knudson’s own site, where the document is posted beneath links to his book trailer, author page, and book press release. A minor point, perhaps, but hardly the kind of thing which eases concerns about either his motivation or the separation between the two endeavors.
Perhaps you’ve already heard about the “2012 Worldwide LGBT Civil Rights March”, slated for Saturday April 21, and are eagerly making plans to attend. Odds are, though, that you haven’t. I consider myself to be fairly well-informed on all things LGBT, but I hadn’t heard of this particular march either, until I received an email from the head organizer, offering to engage me in its planning. As flattering as his offer was, I also found it a bit perplexing, for while I may think of myself quite highly at times, chances are that most of you reading this have no clue as to who I am. Which begs the question, “Why reach out to me, a little-known author, when the sea has much bigger fish?”
I politely declined, due to time conflicts, but have continued to follow the group on facebook. Indeed, the idea for this event sprung from their Let’s Reach 1 Million People Campaign, which has (of this writing) 16,624 members. The stated objective of the group is that it has been “created for the achievement of basic human rights, inclusive of full legal civil rights allowing freedom from unwarranted infringement by governments and private organizations while allowing and ensuring one’s ability to participate in the civil and political life of the state without discrimination or repression.”
While there is much to admire in their broader goal, as I began to dig more deeply to find answers to my questions, I discovered only more questions. For example, the event is being billed as a “Civil Rights March,” but that turns out to be a bit of a misnomer. Likely, when you hear the word “march,” visions of a long parade come to mind, filling the street for miles. And while there may be some of that, there is no “one” march. Instead, there are currently 25 host cities, and each can plan whatever type of event they desire. While some may indeed choose to observe the moment by marching with flags and banners, others may celebrate with a picnic. In Great Britain, as the date falls on the Queen’s birthday, the group has mandated a news blackout (out of respect or some such) and are not publicizing their activities. Now, I ain’t that bright, but I’m uncertain how effective an event can be if you don’t alert people as to where it is and what it entails. (Perhaps they’re demanding equality while sipping tea and eating crumpets?) (more…)