Compassion in Our Community
With the Leadership of Brendan McHugh, A New Archival Website Honors Shanti’s 45 Years of Service
by Hank Trout
Photos by Judi Iranyi
Founded in 1974, by Dr. Charles A. Garfield at the UCSF Cancer Institute, Shanti was one of the first volunteer organizations in the U.S. to provide support to people with life-threatening illness, bringing compassionate care to the suffering brought on by illness and isolation. Facing deaths and suffering in the San Francisco community as the early nightmarish years of the AIDS pandemic dragged on, Shanti morphed into one of the world’s very first community-based organizations to help support people diagnosed with HIV/AIDS.
During Shanti’s three-and-a-half decades of service to the HIV/AIDS community, thousands of clients have passed through the ASO’s doors——seeking emotional support, a shoulder to cry on, a comrade to rage with, someone to visit them in the hospital, someone to do their dishes and drive them to appointments, to help them find housing——aided by hundreds of courageous, caring volunteers. Some of those volunteers from the early days of the Plague are still with us; others, sadly, have passed on. To ensure that those volunteers and clients are never forgotten, Brendan McHugh, a graduate student in the Department of American studies at the University of Minnesota, Twin Cities, has created Shanti Projects, an online archive of photographs and the stories of those who contributed to Shanti’s success.
A thirty-two-year-old HIV-negative gay man, Brendan is too young to have lived through the early days of the AIDS pandemic, but his compassion was honed early on. “Even at a young age,” he told A&U, “I was drawn to understanding world conflicts and human rights. I started reading very early and was really disturbed and fascinated by the Holocaust. I was reading a book about Anne Frank that discussed who else was persecuted and killed by the Nazis alongside the Jewish people of Europe. I saw a word, ‘homosexual,’ that I couldn’t really say and had never heard or read before. I asked my parents what that word meant, and they told me, and I remember distinctly hearing in my head that’s me.”
Brendan’s connection with Shanti goes back more than a decade. He lived in San Francisco from 2009 to 2015 before moving to the Midwest to attend graduate school. The Women’s and Gender Studies department at San Francisco State University required Brendan to complete an internship with one service group or another. A friend had just completed her internship at Shanti, and several of his professors and advisors had volunteered at Shanti, and they encouraged him to choose Shanti for his internship. As he searched for a topic for his honors thesis, and knowing that he wanted to write about AIDS, “I truly thought writing about ACT UP San Francisco was going to be my calling. Shanti captured my attention the more I learned about it.” He spent a great deal of time in the archives at UCSF and the GLBT Historical Society. With summer funding from the University of Minnesota, he was able to start interviewing people. Originally planning to write a sweeping history of the San Francisco Bay Area’s response to AIDS, Brendan narrowed his focus to Shanti’s role in the pandemic. His plans changed——no dissertation——so he turned his attention to creating the website Shanti Projects, “a bird’s eye view of Shanti Project’s AIDS work,” as the website puts it.
This archival website is a remarkable living, growing, interactive archive of photographs and ephemera from Shanti’s history. Divided into several sections, the website explores Shanti’s earliest days, the training that volunteers underwent, and the changes in Shanti’s services through the decades, including Shanti’s now-defunct Residence Program and the organization’s volunteer counseling services at San Francisco General Hospital’s storied Ward 5B [A&U, November 2019]. The site also details Shanti’s HIV client services from the 1980s to the 1990s, highlighting Shanti’s support groups, the Emotional Support, Practical Support, Crossings, and Van transportation programs, along with Shanti’s mid-1980s ad campaigns recruiting volunteers. Combining photographs with first-person accounts of the pandemic and Shanti’s response to it, volunteers and clients share their stories of compassion, fear and courage.
The bulk of the photographs on the website were taken by Judi Iranyi. Iranyi became involved with Shanti when her son Michael was diagnosed with HIV. Michael died at the age of nineteen. Iranyi painfully remembers “the medical staff’s contagion hysteria: gowned and masked up. One of the nurses insisted that we get someone to give Michael last rites. We declined. Basically, the medical staff had written Michael off. And indeed, back in 1984, AIDS was a death sentence. If he had been diagnosed today, Michael would probably be still alive.”
“A child’s death,” she continued, “is not something you get over, but you learn to live with the pain. I feel lucky to have many images from his life, they add physicality to the memories.”
“After Michael’s death,” she told A&U, “I participated in a brief support group. I became a Shanti emotional support volunteer. I also volunteered to take the photos of each volunteer that attended the trainings. I did the photography for Shanti’s newsletter ‘The Eclipse’ from 1985 to 1987.” The section of the website called “Shanti Portraits, 1985-1987” features dozens of Iranyi’s solo and group photos of volunteers. Each of the group photos presents five or six volunteers seated in two rows on the steps to Shanti’s first building. In the faces in each photo, we see the gamut of responses to the pandemic——fear, confusion, anger, but mostly hope and courage. A quick click on any of the photos reveals the names of the volunteers in the photos——those who can be identified, that is. Almost as if to remind us, painfully, of the incalculable losses our community suffered, many of the volunteers cannot be identified, marked only as “Unknown,” their names lost to the pandemic. The caption on one such photo refers hauntingly to “Group of Six.” (The site allows for comments in hopes that viewers will be able to help identify individuals in these group photos.) These images will be continually updated to identify individuals, dates of their service, and most importantly, stories and narratives from and/or about volunteers.
The individual portraits in this section also commemorate early volunteers at Shanti. As with the group photos, not all of the volunteers pictured can be identified. However, a click on some of the photos reveals text written by that volunteer for The Eclipse or other publications. For instance, volunteer Lion Barnett wrote in the newsletter in 1986, “So many vivid images bounce in and out of my mind regarding the time I’ve spent involved with this incredible organization. I remember how helpless and angry and devastated I felt (and yes, still do feel) watching the horror of AIDS spread through our community… To me, this is our holocaust. I want to bring all of myself into the fight against AIDS. I want to express not just my anger and courage, but my sadness, compassion, and love, as well as my fears, wit, fallibility, and ferocity.” Barnett’s experiences with Shanti mirror those of hundreds of other volunteers.
The section of the site entitled “Heart Work” features the photographs taken by Iranyi, Mariella Poli, and Jim Wigler [A&U, August 2017], with other photos provided by the University of California San Francisco’s Special Collections, the GLBT Historical Society, and the San Francisco Public Library. These black-and-white portraits capture people with AIDS who played important roles as either a client, a volunteer, or a “public face of AIDS” in connection with Shanti during the 1980s. The final section, “Active Listening,” is being developed; it will provide audio clips from oral histories, interviews conducted by McHugh for this project, with accompanying transcripts to follow. These will include interviews with Gregg Cassin, an activist who has been engaged with the pandemic since its earliest days and serves as the Program Director for Shanti’s “Honoring Our Experience” program for long-term survivors; Alison Moed, the Nurse Manager at Ward 5B; Ed Wolf, the writer and long-time Shanti volunteer; and several others. McHugh plans to continue these interviews and to update the site when possible.
Gregg Cassin worked closely with McHugh on the project. “Brendan‘s work and research is a love letter to the early responders, the people who did the unfathomable in the darkest, scariest time, going into the homes of dying strangers, many who had been deserted by family, to give comfort and compassion in their last days. And he reminds us, This is who we are, this is how our community responded when the world had turned its back on us and we recognized that we had to rely on one another. Thus, a community that had been demonized, shamed, blamed and forgotten became the role models of how to simply be human.”
In this obvious labor of love, Brendan has researched Shanti and lived with his findings for over ten years now. In addition to maintaining and adding to the website (once he graduates from the University of Minnesota, he will migrate the site off of its current platform that was provided to me by the University; viewers can sign up for the project’s newsletter to keep abreast of updates), he hopes to build an audience for the website. He hopes also to write a book about Shanti and his experiences researching its history. His next immediate project is a history of women living with HIV/AIDS in the Bay Area from the 1980s to the present.
“I hope,” Brendan told A&U, “that people see in this exhibit the importance of addressing human suffering in a way that centers on real people and what they feel their issues are. It is really hard work to do that——to drop an agenda you might have as a scholar, an activist, a health worker——when approaching someone who needs help. And of course, I hope that people will start researching Shanti more… The stories of this epidemic are so important and should be seen as an opportunity to speak to our society at large and not be pigeonholed.
Hank Trout writes the For the Long Run column for A&U