When given the option to write an honor’s thesis on any topic of my choosing, I knew I wanted to write about local AIDS-activist responses. I decided to focus on how ACT UP/San Francisco and Shanti dealt with internal conflict and change with regard to difference (race, gender, class, serostatus) in their tactics in responding to the AIDS crisis. At the time, I thought ACT UP’s history would be my life’s path. But the more I researched, Shanti just sank in differently. I remember having this feeling that their history could go unwritten, that it could slip away casually.
Little did I know that my health, specifically my mental health, was also slipping away: I had my first depressive bipolar episode in the middle of my final semester of undergrad. I was fortunate to get help relatively quickly then, but I was still debilitated for several months. My understanding of the need for support—which happens to be the kind Shanti provides—dramatically shifted.
At the risk of simplifying everything in the four years between my bachelor’s degree and the start of graduate school, my ability to return to this work, my feeling of responsibility for it, provided me a tether. After several years of insecurity, I gained a great amount of stability in my life. Unfortunately, this stability was slowly broken during my career as an almost-PhD student. In my fourth and most horrible year of graduate school, I admitted myself to the ER for suicidal ideation.
After what felt like hours sitting in a hospital cave made of curtains, the doctor pulled back one and stepped into my “room” in the ER. I was beside myself in hysterics and was in much psychic pain. She simply held my hand, apologized for wearing gloves while doing so, and listened to everything. I mentioned how hard it was doing the—to be frank—bullshit bureaucratic school things. I felt like I couldn’t handle doing this emotionally intense research at the same time; I didn’t know if I could do work and stay alive, all at once.
After a beat, she told me point-blank, “I am so sorry you’ve been dealing with all of this . . . You’re in here right now and chose to come in today because you know their stories are keeping you going and you need to do this. They are why you still want to be here.” That comment centered me for most of that confusing and emotionally draining day.
Three years after that hospitalization, I’m happy that I’m able to bring the stories of sometimes-little-known figures to the attention of a wider audience. But it can be difficult and is bittersweet: While I have many, many other reasons to live and love my life as it is now, the driving force continues to be that I must rectify the almost erasure of this not-so-distant past, which is so closely tied to my queer community.
One Shanti Ward 5A counselor, Mark Higgins, described Shanti’s method as being “the ear that no one else has.” When I first heard that phrase, it reminded me of Svetlana Alexievich’s description of her work in her use of oral narratives documenting the history and culture of the former Soviet Union as a medium of voices. While she does not consider herself an oral historian, when I first discovered her work in the midst of my divorce from academia, I connected with it deeply.
In Alexievich’s essay “Confronting the Worst: Writing & Catastrophe,” she riffs on Flaubert’s declaration that he was a man of the plume: When describing her interview and writing methods, she writes, “I am a person of the ear.” Shanti volunteers, staff, and clients were (and are) people of the ear too. It’s my private joke—I know few people personally who are Alexievich fangirls—that I’ve been a person of the ear on multiple levels for years, since I’ve worn hearing aids since the age of five.
Alexievich’s interest is in crafting work that conveys human beings via their feelings and inner turmoil: “You have to capture people in moments of upheaval.” Shanti’s AIDS work very much represents a mass grassroots response to a major upheaval, as the project centers the whole-body experiences of PLWAs in their work, not just their physical bodies and health status.
Their services, specifically the Emotional and Practical Support Programs, rely heavily on volunteers. Practical Support volunteers go into people’s homes and assist them in their everyday survival needs, errands, and chores if they are too sick to do them themselves. Emotional Support volunteers are matched with clients and meet with them once a week to spend time with them and provide them space to process their experiences.
Shanti’s other AIDS programs that garnered attention locally, nationally, and globally were the Ward 5B/5A Shanti counselors on San Francisco General Hospital’s inpatient AIDS unit and the Shanti Houses—the first AIDS-specific Residence Program in the US. Together with the Emotional and Practical Support Programs, as well as the PWA Activities Program and support groups, Shanti has been central to San Francisco’s AIDS response. They are sometimes referred to as the keystone of the San Francisco Model of AIDS care.
In the footage of the volunteer trainings, the facilitators often describe the counseling role as being the ultimate judgment-free friend you might not yet have but have always dreamed of. After watching several intense and cathartic roleplay exercises between a Shanti client and training facilitator, I wrote in my notebook, “Damn, I want a Shanti volunteer.” While I have yet to have one (since I don’t qualify for their programs), I’ve met a large number of people who once were in that role.
Shanti volunteers are trained in the art of active listening. Hundreds of people in San Francisco became Shanti volunteers throughout the 1980s and 1990s and went through this training. They listened to the most personal stories of those first generations of people living with HIV/AIDS and bore witness to their lives and the lives of their loved ones in grief. Talk about an epic history of emotions and feelings at the human scale.
It became clear to me during the first years in the archives that no one had thought to record all of these volunteers’ stories in any official capacity. I remember thinking to myself, quite genuinely, that someone should record them and write it all down—but who? Only in my midtwenties, I hadn’t realized just yet that I was the answer to my own question.
In May of 2021, when I was offered a spot in a Shanti training over Zoom as a community participant, I jumped at the chance.
There are eight qualities you must embody as a Shanti volunteer. You have to be fully present, validate and support feelings first, be authentic, be empathetic (as opposed to sympathetic), offer unconditional and positive regard, accept differences of others, avoid giving advice, and avoid trying to “fix” things. The exact phrasing of these qualities has shifted in the almost fifty years of Shanti’s existence, but I believe that the current list I’ve provided, based on the training I attended, is the clearest.
Shanti volunteers are trained in the art of active listening.
Being fully present and putting feelings first was more daunting than I expected. I mean, living with bipolar disorder, I have all the feelings and more. Does that mean I express them or work with other peoples’? And being fully present can be challenging in an age when we all constantly check our phones. Luckily, I record most of my interviews via an app, so I’m forced to not look at my phone other than to check that it’s recording.
Active listening, according to the Shanti training, entails an intense listening that does not let you form the question or answer you have for the speaker before they are done talking. It makes you sit in silence and get comfortable with it. Taking on that task as an oral historian took me from being an observer—a position not rooted in presentness—to being engaged directly with the people opening up to me.
When people get emotional when we talk, which happens more often than not, I no longer feel the need to verbalize or say anything. If they need to cry and catch up with themselves, or get up and walk out of the room and then come back, I let them do it. They can do whatever they need to do, and I will still sit there and listen. If the memory they shared was particularly intense, I don’t let them just drop their feelings. Instead, I pick up what’s called the “emotional ball,” taking a moment to thank them for going back to that memory or sharing it with me. I always mean it.
I’m often surprised when I watch or listen to the raw recordings of other researchers’ interviews; I pick up on missed opportunities to explore the deeper theme of the person’s stories. Those silences and pauses are important. This is especially true when the interviews are about intense moments of history or involve social justice movements and mass trauma. Even listening back to my own interviews, a sometimes-painful exercise in listening to my self-chatter, I see where I could have waited longer or maybe circled back to a moment.
Granted, it’s not my aim to make people cry but rather to be prepared and stay open to them doing so. Some people don’t get emotional and that’s totally fine. Some people love to talk about what they experienced and went through, while others are reluctant at first. I match the energy they bring into the interview as best as I can. (Another key Shanti skill of “mirroring.”)
In retrospect, I see the move from archives and theory to oral history as a major move into being fully present. It also taught me to love what being your authentic self means: As an out gay man who lives rather openly with my hard-of-hearing status and mental illness, I thought I was good; I had already done the work. Wrong. Being authentic, for me, meant staying true to the information and experiences that challenged my preconceived notions of what real transformative social change looks like.
One interviewee I felt a connection with is Carlin Holden. A former contingent faculty member and sarcastically self-described faculty wife, she moved to San Francisco in the 1970s after a divorce. Once in the city, Carlin formed a close connection with the gay community. After living in the city for some years, she became a Shanti volunteer after her friends started getting sick. For about four years, Carlin facilitated a long-term survivor support group (in the 1980s and 1990s, this meant you had lived for more than two years with your diagnosis) and attended the Wildwood PWA weekend retreats as a masseuse.
When we spoke over Zoom last March, she talked about going through her photo albums full of pictures from that time and shared some of those photos with me. There were so many different parties, drag competitions, and summer days at Wildwood’s pool surrounded by towering redwoods. The intimacy and love in the photos was palpable. They brought back the memories for her: “I frequently say that the experiences I had at Shanti showed me that there was an awful lot of living going on in the midst of all that dying.”
Before there was Brené Brown, there was Shanti beating the drum for empathy versus sympathy, doing so in the context of an epidemic where groups of already incredibly stigmatized people were further discriminated against. I’ve also interviewed Micaela Salort about her life and long history with Shanti, especially her counseling work on Ward 5A. A dynamic and often hilarious Puerto Rican lesbian born and raised in New York City, her journey was particularly spiritual.
Salort relayed a lesson from her personal guru Ramana Maharshi: “A follower had asked him, ‘How do we treat others?’ And he said, ‘There are no others.’ And I love that. I say that to myself a lot. Ward 5A gave me the ability to be with people that I never would have met. You know? [People I] never would have crossed paths with if it weren’t for the epidemic.” Salort’s descriptions of moving to San Francisco in 1978, the life she built for herself in the women’s community at Shanti, the people on 5A that she helped pass from life to death, and her guru’s words deeply resonated with me.
I moved back to San Francisco in August of 2021. Returning to the city as a more mature person, compared to who I was in my chaotic twenties, has enriched my relationship to this place. Micaela Salort’s words about there being no others, and the words of so many of these people about the beauty of queer life in San Francisco, often come up for me as I go about my day.
Because I’m so immersed in my research, my present writing practice can feel like time travel. I’m transported to other San Franciscos of the ’60s, ’70s, ’80s, and ’90s on a regular basis. Being steeped in this epidemic’s history from the vantage point of the Shanti Project has made me an optimist. Considering the struggles I’ve had in the past twelve years, an optimist baptized by fire.
It has taken me well over a decade to cultivate my optimism and to understand the complexities of this sad, rageful, grief-stricken, often-joyous, even delicately strong community history. I would not have it any other way. There are no others.
Shanti’s past has given me a reason to live a few times. To say I’ve lost all objectivity is maybe fair; I try to maintain a level of objectivity, but I also don’t care about it sometimes. To quote journalist Arlene Silverman, who covered Shanti for the San Francisco Examiner in the late ’70s, “How can one be objective about death?”
I feel fortunate that this work is a major part of my life’s purpose. To take down these names, these notes, these memories, to scan the letters, cards—it’s all very Elizabeth Bishop and her art of losing. Except none of these stories will stay lost if I can help it. I hope.
It’s a lucky thing that I very rarely wonder what I could possibly write about next. I more often have to figure out how to edit down to the word count or the right place to pitch. I’m glad I went with my gut instinct and chose to study Shanti. As a Californian, woo-woo as it sounds, I feel like it chose me.
Brendan McHugh is a queer multiply disabled San Francisco-based features writer and public historian. His work on AIDS/HIV history and disability has been featured in KQED, The Bold Italic, Contingent Magazine, Lady Science, JSTOR Daily News, Nursing Clio, and The Better Because Collective. He runs the online exhibit Shanti Projects: Intimate Histories of the AIDS Crisis which was covered by A&U: America’s AIDS Magazine. He has forthcoming work in Bay Nature Magazine. You can follow him on twitter @brendanexplain1