The secret history of Catholic caregivers and the AIDS epidemic
A mother of five needed help navigating multiple medical appointments, sorting her medications, arranging transportation and completing the many other day-to-day challenges that confronted people with H.I.V. and AIDS in the early years of the epidemic. Julie Driscoll, a Sister of Charity of Nazareth, remembers this particular woman, because even in the face of the fear and uncertainty that accompanied a diagnosis then, she learned a lesson about gratitude.
“Toward the end, when we would say, ‘Winnie, how are you?’ she would always say, ‘I’m blessed,’” Sister Driscoll recalled recently. “Can you imagine?”
For the past few years, I have researched how the Catholic Church, both the institution and individual believers, responded to the intense suffering of the most marginalized during the AIDS crisis in the United States. For those of us who are too young to remember, the scope of that suffering can be difficult to comprehend. According to the AIDS research group amfAR, more than 319,000 people in the United States died of complications related to H.I.V. and AIDS between 1981 and 1995.
Many of them felt abandoned by their friends and family and by the institutions that should have responded with both compassion and bold action.
More than a few Catholic priests, sisters and brothers, and laypeople confronted the stigma by responding pastorally to the H.I.V. and AIDS epidemic.
“People were desperate. Your friends were just dying every week,” recalled Andy Humm, a gay rights activist and journalist.
More than a few Catholic priests, sisters and brothers, and laypeople confronted the stigma perpetuated by nearly every sector of society, including the church, by responding pastorally to the H.I.V. and AIDS epidemic in the early years. Sister Driscoll was among them.
In its earliest days, the House of Ruth was not so much a “house” as it was two rooms nestled inside a parish rectory. People managing H.I.V. and AIDS, mostly women and their children, stopped by the House of Ruth for assistance. Sometimes they needed help finding a doctor willing to treat them—this was a time when even some health care professionals would not touch patients with H.I.V. or AIDS—or needed just for few dollars for bus fare so they could run errands. They also sought assurances that they were not alone.
“People often asked me, what should I do if you know someone who has H.I.V.? Touch them please. Hug them if you can.”
“People often asked me, what should I do if you know someone who has H.I.V.?” Sister Driscoll recalled of her efforts at community education. Her response was: “Touch them please. Hug them if you can.”
Today, the House of Ruth is a multi-site housing and social services center that serves more than 600 people annually. (It is estimated that about 6,600 people in Kentucky live with H.I.V.) It is one of the largest resources of its kind in the state, which has experienced a surge of new H.I.V. diagnoses in recent years.
Challenges remain in eradicating H.I.V. today, but a diagnosis is no longer a death sentence. Medications are available both to decrease the transmission of H.I.V. and to slow or eliminate the progression of H.I.V. to AIDS.
So why am I interviewing dozens of people about events 30 years ago, asking them to describe moments marked by sadness, fear and anxiety? It has been decades since many of them thought about those experiences. I have noticed that often when I wrap up these conversations, the person I am interviewing will say something like: “I hope that was useful. There’s just so much I don’t remember.”
And sometimes they will reach out a few weeks later.
They might have rummaged through their personal files or reached out to a friend or former colleague. They now have more to tell me. In follow-up conversations, they make the lives of their lost friends more vivid, recounting quirky personality traits or memorable dinners. They also articulate more clearly their sadness and remember their feelings of helplessness.
These encounters are always moving, but I seek them out for more important reasons than simply wanting to learn about the past.
First, many of these stories of ordinary people responding to suffering in extraordinary fashion have not yet been captured in forms that will last. Given that the first case of what would become known as AIDS was reported in 1981, nearly four decades ago, many of the people who were on the front lines then are now in old age. Time is not on our side.
Many stories of ordinary people responding to suffering in extraordinary fashion have not yet been captured in forms that will last.
Second, the institutional church’s relationship to L.G.B.T. people today is fraught. But there are historical examples of kindness between Catholics and L.G.B.T. people during the epidemic that can be helpful as we navigate major societal shifts.
Many people in my generation—I am in my 30s—have left the church because of the perceived hostility of some church leaders toward those with non-normative sexualities. People younger than me often look past the church entirely when trying to order their lives for similar reasons.
H.I.V. and AIDS affected more than the gay community. But I focus on the relationship between the gay community and the church at that time because it provides previously unknown stories of Catholics overcoming social bias. I am eager to listen, and I seek to help share their stories of quiet courage.
Take Michael Carnevale, O.F.M., a Franciscan friar who for many years ministered at the Church of Saint Francis of Assisi, a large parish just across from Pennsylvania Station in New York City.
During a sabbatical in the early 1980s, Father Carnevale lived in San Francisco’s Bay Area. He befriended a man named Michael and his partner, Donald. Michael, an artist whose love for life manifested itself in the epic costume parties he hosted, became sick. He lived with H.I.V. for about three years. During this time, Father Carnevale spent weekends with his friends, helping out as Michael grew weaker.
There are historical examples of kindness between Catholics and L.G.B.T. people during the epidemic that can be helpful as we navigate major societal shifts.
On Halloween night 1983, Michael died. He was surrounded by about 30 friends, each in costume for one last party. Father Carnevale was among them. Moved by his friend’s suffering, Father Carnevale decided to do more. He volunteered as a chaplain at San Francisco General Hospital, visiting the mostly gay men who were spending their final days in a ward for people with H.I.V. and AIDS. He quickly came to understand that these men needed more than medical care. They needed to know people cared about them.
“At that time, the church was really not that involved,” Father Carnevale recalled in an interview in 2017. He knew there was a need, but he was not sure who could help. His mind turned to a group of “old Italian ladies” who met regularly at Mission Dolores Parish in San Francisco. He asked if he could address the group, and they agreed.
“I told them of the need that we had, that young men and young women [with H.I.V. and AIDS] were [alone] in their apartments and they really didn’t have anybody to take care of them,” he said.
He asked if some the women would consider volunteering.
“I didn’t know what kind of response I would get, but it was amazing,” he said. “They would go and they’d clean and they’d cook. Some of them would even take some of the guys and the girls to the doctor’s appointments because they didn’t have anybody.”
Embedded in these histories are lasting witnesses to the power of Jesus’ call to love one another.
Homemade meals, clean apartments and rides to appointments may seem insufficient at a time when the communities most affected by H.I.V. and AIDS required systemic change—in health care, government, religious institutions and nearly every other sector of society. The church is hardly without blame when it came to creating a culture of fear and judgment around H.I.V. and AIDS. But for those who felt abandoned and alone, those acts of kindness were more than gestures. They were lifelines to the outside world.
It is impossible for anyone who was not alive at the time to feel viscerally the fear that permeated communities ravaged by H.I.V. and AIDS in the early days or to understand the abandonment and isolation many individuals experienced in their final days. But I have sat quietly with men who, decades later, tear up as they recount all the friends they lost in just a few years. I have looked in awe at Catholic sisters, now in their 70s and 80s, who wince at my suggestion that their work was extraordinary, if not heroic.
“This is not a bunch of martyrs in that period. It really isn’t” is how Pascal Conforti, an Ursuline sister, put it. Sister Conforti was the director of pastoral services at the former St. Clare’s Hospital in New York’s Hell’s Kitchen neighborhood. Before it closed in 2007, St. Clare’s served a large number of patients with H.I.V. and AIDS. “We did what we did because that was where [we were] at the moment.”
Though most of the people I have interviewed resist praise, a thoughtful look at this time in history shows that each kind response to the H.I.V. and AIDS epidemic during the early years was, in fact, extraordinary.
Some people, Catholics included, made life more difficult for the vulnerable. The vast majority of Americans did nothing at all. But more than a few people provided a gentle touch, free of judgment and scorn. These are just a few stories. Many other people have shared their stories with me, and I am seeking to hear more, because embedded in these histories are lasting witnesses to the power of Jesus’ call to love one another.
If you have stories from the early days of the H.I.V. and AIDS epidemic that you would like to share, please email the author at firstname.lastname@example.org. Anna Marchese, a former intern at America, contributed to the research in this essay.