The AIDS Epidemic: Fortieth Anniversary: A Personal History

By Erika Grumet

Forty years ago today, the first reports of the “pneumonia” that we would eventually know was AIDS broke. As the most senior member of the Ivory Tower Boiler Room team, and the one with the most experience in HIV and AIDS related topics, (and the one who brought it up during planning in the first place,) writing about it fell to me. I cannot count the number of posts I began and deleted and began and deleted, or the hours I agonized, or tears I cried over what to write. Nothing felt like I was honoring, memorializing, sharing and enlightening in the right balance. 

And then the four of us sat down to record our round table last night. As we were doing that, I shared some of my own stories as one does on a podcast, but the episode itself and all of the writing I’ve done so far this month has been heavy with emotion, and really dug deeply at my core. As we talked and told our stories I shared something from my personal history with HIV, which doesn’t begin 40 years ago, but closer to 35 years ago. AIDS was certainly a word that I had been hearing; I grew up in a house where daily newspaper reading was a part of the routine, where car rides were often filled with the sounds of NPR and where adults were definitely consuming news sometimes without shielding children as much as might have been wise. 

One day, sitting in the waiting room at some doctor’s office, I’d already finished the book I’d brought with me, so I began flipping through magazines. At that point, many magazine articles had begun covering stories about safer sex, and what people could do to try and reduce their risk of contracting HIV. The story I was reading included that information, and mentioned using condoms for oral sex. I was somewhere around ten years old and had a vague idea what a condom was. And so there I am, ten years old, sitting in a chair, in a doctor’s waiting room, feet not touching the ground yet, reading this article in Newsweek, I think, and finding myself incredibly puzzled at the suggestion that one should use a condom for oral sex. I ran my own tongue around my mouth, thought about what a condom looked like, and wondered “How in the world can you get a condom unrolled all the way on your tongue?” I thought oral sex meant French kissing.

I joke with the Ivory Tower team that I am the bringer of Gloom and Doom; and it’s true…Mary writes a lot about crime and Andrew is a Whitman scholar; Adam, in addition to editing our stuff is firmly into 16th and 17th century literature, especially epic poetry (and he is my absolute favorite person to listen to when it comes to talking about Shakespeare) and I write contemporary poetry (mostly) about really dark things it seems… But I have watched HIV transform–as a public health issue, as a political issue, as a social issue. It’s deeply woven into the fabric of my consciousness, in so many shades of red, from angry crimson and frightening blood to soothing and warm mahogany.

My first experiences with AIDS were the frightening, gloom and doom, death and destruction pictures in magazines and on TV: emaciated, dying people looking like the images of the Holocaust victims I had seen, tended by health care workers in HAZMAT gear. So many unknowns. Terrible sad stories, about people rejected by their families, and health care providers afraid to help them, and mostly helpless to do anything other than make them comfortable as they withered away. As a young person, I was swarmed with “Just say no” messages. We had national leadership in the White House and in our Surgeon General who refused to acknowledge what was going on (Ronald Reagan didn’t mention the word “AIDS” in a speech until 1985. Nancy Reagan was only slightly better at encouraging people to talk about it, and even then, Reagan remained uncaring, disengaged and distant at best, really beginning to pay attention only after a heterosexual white woman, Elizabeth Glaser, who contracted HIV through a blood transfusion during the birth of her first child, essentially, the perfect “innocent victim” spoke with him about it. C Everett Koop, the health policy leader, also failed the American people, finally sending out a mailing to all American homes in 1986.) It was through this terrifying and tragic time though, that I was learning that the possibility of queerness existed. Newspapers had to mention the AIDS epidemic. And mentions of the AIDS epidemic had to mention that gay men were the most at-risk population. And I was there just taking all of it in. So in spite of really only seeing images of men loving men, and in spite of everything about it seeming horrifying and tragic, somehow I still extrapolated the idea that loving relationships between women were possible. 

As the late 80s and early 90s unfolded, the virus that causes AIDS was discovered, and tests allowing people to know when they had HIV became possible. And eventually, although the side effects were brutal, medications became available to help control the virus, allowing people to survive and thrive with HIV for longer and longer periods of time, living fuller and fuller lives. And in my own life, I discovered those incredible feelings for other people–the feelings that make you confused and warm and tongue tied. Everything around me had always told me that having those feelings about boys was “normal.” But I definitely had those tingling feelings about people who weren’t boys…and I did everything possible to squash them, to hide them, to not share them or tell them to anyone, even conducting an entire summer camp romance without friends finding out. Later, I met the first person with HIV who became part of my life, I began my work as a peer educator, conducting peer to peer programming about HIV (which would lead me to incredible volunteer opportunities, and eventually my decision to earn an MSW and to work in public health, doing HIV/STI testing and prevention and sexual health work with adolescents and young adults.) And suddenly, we began seeing red ribbons everywhere, and people were talking more and more.

It seemed to become a rite of passage among sexually active young adults to get your first HIV test at some point… on the same level with giving blood for the first time at a high school blood drive. There would be some event at the university, or something would happen, and you would go together, maybe in a small group, and go through the pre-HIV testing ritual of explaining your history, why you were there, talking about harm reduction, having blood drawn, being handed a stack of condoms, and getting sent on your way to wait a week or two for your results, the ominous possibility lurking in the back of your head, but, still holding onto the idea that you were young, healthy and invincible.

My turn came late in 1994. I could probably have ignored the possibility for a while longer; my involvement with prevention work had made me kind of compulsive about making safer choices (although it didn’t stop me from enjoying myself with people who were in various places along the gender and sexuality spectrum,) but in the fall of 1994, I was raped. No sexual assault victim or survivor should ever feel forced to report the crime to authorities, or to go through the experience of having a rape kit done, and all of the associated medical and legal processes, and I made the choices that felt right to me at the time, but whatever that survivior chooses, there are medical concerns to deal with–in my case, pregnancy and sexually transmitted infections, including HIV. I wasn’t pregnant, that had already been established, but during our annual AIDS Awareness week programming at school, anonymous HIV testing became available on campus through a partnership with a local HIV service provider. They came in, did all the pre-test counseling, took the blood samples, and then the patient had to follow up directly with them at their office at the end of the prescribed waiting-period. And so my friends and I, who represented a range of sexual orientations, some of whom were doing this test for the first time, and some whom had been through the process before, we met up, walked over to the testing site together, sat around and filled out our paperwork, and chose our code numbers (anonymous testing, after all, means no names,) and one by one disappeared into small rooms to meet individually with a counselor about our own risk. It was the first time I’d told anyone, including my friends, what had happened to me, and I can still remember how I shook and cried while I did it. And when I was done, I mopped up my face, and slapped a brave smile on, got my blood drawn, and cheerfully joined friends for our usual dinner, in spite of my guts having twisted themselves into intricate knots and relocated themselves within my abdomen. 

Unfortunately, I had to go alone to get my results. I hopped a Metro train, put on a brave face (again), and entered the clinic, not quite sure what to expect. I checked in, found a seat, and pulled out something to read while I waited for my number to be called, and then I was escorted to the usual kind of small consultation room one experiences in a doctor’s office, although this one was filled with posters and pictures and information specifically about HIV instead of the more general heart-health-and-good-nutrition-type-things I was used to. I don’t remember feeling particularly anxious or anything while I waited, just stuck my nose back in my book, and then, when I heard the doors open, I tucked a bookmark in and began to look upwards to see the face of the person who walked in, but my eyes froze on the paper he was carrying in his left hand. “Your Results Are Positive” the headline said. And then lines and lines of text after that.

Terror and nausea took over. I know he sat down, introduced himself, and confirmed that my ID number matched the test results I was about to get, but I have no memory of those details, only of how I felt for those moments until I saw him flip over the paper, circle the headline and explain to me, “Your results are negative.” It was a two sided print out, with options for both “positive” and “negative” on the same page. I cannot describe the relief I felt when I was given the actual results of my test, which were negative, or the follow up conversation about harm reduction, just the memory of being handed a large pile of condoms, some instructions about follow up testing (still necessary, especially because of the circumstances that had brought me in in the first place,) and information about safe choices, and going back outside. I folded the paper into quarters, tucked it into the book I was reading so that no one could see it, and walked outside. I was appreciating the sunshine and the weather, and I decided on a long walk home instead of a train ride.

Volunteer work led to some wonderful opportunities: meetings with politicians, meeting members of the cast of MTV’s Real World Season 3 (which featured Pedro Zamora, who was living with AIDS when the series was recorded, and passed away while it was airing) and incredible roles in campus leadership. All of this eventually led to a career doing this work. My own journey wouldn’t be possible if it weren’t for the much greater impact that HIV and AIDS has had on our society, socially, politically, artistically.

In 1969, the Stonewall Riots happened, and the modern queer liberation movement as we know it began. A year later, in June of 1970, the first Christopher Street Liberation events took place, the precursor to the modern Pride celebration…but all of this happened at a time when “homosexuality” was still classified as a mental illness…that designation wouldn’t be removed by the APA until 1973. Five years after that, Harvey Milk was murdered, and three years later (or only 8 years after homosexuality was depathologized,) in 1981, suddenly the queer community (gay and bisexual men in particular, but women played a large role in organizing support and caregiving and political action,) was swept by an unimaginable tragedy, when they had barely had time to figure out who they were, or to endure the growing pains that are to be expected. The fight became not about human rights and equality, but about just surviving.

We saw our artistic communities, crushed by loss, respond with compassion and beauty; Cleve Jones and friends created the NAMES Project AIDS Memorial Quilt in the mid-80s. Three foot by six foot panels–approximately the size of a grave–commemorate only a fraction of the people who have died of HIV. Within about a decade the Quilt itself had grown so large that it couldn’t be displayed in its entirety anymore. (I was fortunate enough to see the whole thing displayed in 1996 in Washington DC, and if you do have an opportunity, I encourage you to go see it, and if possible to participate in the ceremonies preparing the display. It’s an intensely moving experience, whether you’ve been touched by HIV or not.) The Quilt is now a part of the National AIDS Memorial in San Francisco, and the San Francisco Gay Men’s Choir has put together this video about their history and the history of the National AIDS Memorial. The whole documentary is almost an hour, but if you don’t have the time to watch the whole thing, please do take the time to watch the first five minutes or so, which has some stunning visual representations of how the choir has been affected over time by the losses of HIV and AIDS. And while we often think of the arts communities (visual and performing arts) we can’t forget that the depth of loss touched every part of life–family, business, politics, arts and more. The refusal of the US government and public health leaders to confront the crisis only served to delay and intensify things. (Dr Anthony Fauci, whom we saw and heard so much of during the COVID crisis, is intimately familiar with the experience of being ignored in a crisis, having already been through it once with the emergence of HIV.) 

We saw an entire generation lose friends and companions, and we saw the generation that followed try and make sense of the world they were inheriting, one where many people lacked the role models and support that would have helped them grow through their self discovery and hard questions, into security in their adult roles. It’s meant some incredible moments, seeing kids grow up, and take leadership roles, seeing them grow from questioning to confident, presenting at national conferences. It’s also meant some difficult moments; giving positive HIV test results never got easier–not for me, and I imagine not for anyone. One time, a colleague, who had chosen not to disclose his HIV status (but whose giant, meticulously organized pill case gave it away to me) cut his arm in an awkward spot, near his elbow. I went to take hold of his wrist so I could see what size bandage to get him from the first aid kit, and he screamed at me. I was well aware of universal precautions at that point, and every first aid course I’d ever taken had driven that home. I was certified in first aid for my other job, and yet he was so freaked out by the idea of me touching him, going anywhere near his blood. We did work it out, without him ever actually disclosing his status, but it was still a horrible moment. Moments like that, though, have pushed me to work hard to be the kind of queer role model I needed to see when I was growing up. 

At the same time that the world has been coping with fear, stigma, loss and devastation, we have gained so many things. We have see scientists respond in incredible ways, taking us from “this is a mystery” to “this is a death sentence,” to a combination of “This is PrEP–Pre Exposure Prophylaxis–and combined with healthy choices can reduce your chances of getting the virus a great deal, and if you do get it, it’s become a chronic, but manageable, illness.” We have seen cultural shifts from queer people being the butt of jokes, shame, ridicule and mockery, to being the subject of Very Special Episodes and After School specials, and “mature theme” warnings, to being everyday characters who are part of our media landscape. (Still room to grow–we’re still working to see fully formed relationships in some cases, but we’re on the way.) Musical artists in just about every genre, on major labels, are out of the closet. We have gone from disqualification from military service to Don’t Ask Don’t Tell, to inclusion, to transgender soldiers being included, too–to having the trans soldiers excluded again, then included again. We are seeing efforts to move towards workplace protections and equality. We have been able to gain marriage equality. We’ve been able to join other underrepresented and unheard communities to advocate on behalf of each other, raising more and louder voices and carrying banners higher. The tolerance for anti-queer bigotry is declining, large parts of the world are becoming safer and healthier places for queer people, we are creating more and more opportunities for kids to discover and define themselves, our categories are becoming broader and our understanding better. Those of us who know what’s right are putting more and more love and support into the world for the kids who are growing up today, for kids who fall under our queer umbrella, and raising allies to our community as well.

Forty years is a long, scary time. In my heart, I hope and expect that in less than forty years there will be a cure for HIV, but for now, I reflect on change, on the catalyst it’s been. I give space for joy, love and success, and for grief and mourning, loss and growth. I will wear my red ribbon until there is no longer a need to do it. Forty years ago today, a small article became the pebble which eventually became a boulder. Today I light a candle to bring light to the world, and send that light out with love. 


One thought on “The AIDS Epidemic: Fortieth Anniversary: A Personal History

  1. Absolutely beautiful, vulnerable, and real. Thank you for sharing your experiences and knowledge and empathy in this piece! You are a brilliant writer!!!

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