My first ministry job out of seminary was as a chaplain for RAIN (Regional AIDS Interfaith Network) here in Charlotte. I had two main responsibilities. The primary job was to meet with people living with HIV and AIDS, providing spiritual care and practical support. The second part was to coordinate with “care teams,” groups of congregational volunteers who developed friendships and provided practical support with HIV+ people facing particularly challenging situations.
Those complex situations had several layers. The most immediate was the complex health care that patients required. By 2006, when I started working for RAIN, HIV was no longer the death sentence that it was in the first decade of its emergence. It was, and is now, a chronic disease, one that a person could manage for decades by compliance with medication routines and good overall health practices.
Chronic disease care is costly and time-consuming, though. The cocktail of HIV drugs necessary to keep viral loads to a minimum could have rough side effects. (I’ve not worked in this area for a while now, but my understanding is that the medications keep getting better.) One of the trade-offs of managing a long-term disease was always feeling bad. But laying off your meds for a little while, or taking them irregularly, eventually turned into drug resistance and reduced treatment options. Folks faced tough choices and difficult days.
On top of the complex health issues was the stigma. Though HIV had been around for well over two decades, its causes of transmission well-known, and its care and prevention widely studied, its mere mention still sometimes elicited brutal reactions from family and friends of those who were positive. I walked into tender situations on a regular basis: A man shunned by his family and living in complete isolation; another man carrying deep shame that wouldn’t go away; a mother who thinks she has failed her adult children; a teen told not to return home.
And then, there was the poverty. Sometimes the disease (and its care) caused the poverty. Sometimes the poverty led to the disease. However it happened, everyone was just barely getting by. It is no surprise that the worst health outcomes in this country cluster in poor neighborhoods. HIV is but one of those health outcomes, and clusters together with untreated heart disease, mental health issues, and diabetes as causes of preventable deaths. Care is harder to come by, as is transportation and decent housing and good food and a specialty pharmacy and a bit of peace.1
My work at RAIN formed me in several ways. Among the important connections there was my introduction to the work of Dr. Mindy Fullilove. Her work as a public health psychiatrist in New York and New Jersey turned into an investigation of the connections between city planning and inequitable health outcomes, especially HIV infection rates. Any research into urban history and inequality is going to lead to urban renewal. Dr. Fullilove’s important book Root Shock: How Tearing Up City Neighborhoods Hurts America, and What We Can Do about It became a key to unlocking my imagination and turning me towards the work that became Our Trespasses. The book studied the long-term effects of urban renewal projects in Pittsburgh, Roanoke, VA, and Newark, NJ, in terms of health, local economics, and other measures of community flourishing. Dr. Fullilove does incredible work in Orange, NJ now. My visit there last year was a highlight of a week-long book tour.
Most years, World AIDS Day (December 1) passes for me with a few moments of prayer, and sometimes attendance at a service or luncheon. I generally don’t write about it, except perhaps a brief social media post. I did not intend to this year, as I was not even sure what a short essay would be about. Then, a couple of days ago, the Trump Administration announced that the executive branch would not recognize or commemorate World AIDS Day. “Awareness is not a strategy,” according to the administration.
I’m not sure that anyone thinks awareness is a strategy. But for people with a soul, for humans capable of feeling, remembrance is virtuous. Grief accompanies healing every step. Even members of the Trump administration, who have, to their credit, accomplished the remarkable achievement of being both the stupidest and the meanest people in the world, understand that remembrance is part of any political struggle. And that is what they intend to stifle. They want to cover their crimes of destroying USAID, of halting scientific advancement. Perhaps they also know that AIDS activism has always been some of the most bad-ass activism there is. The history of ACT UP, for instance, is a masterclass in organizing a political movement.
As a theological thinker, I will also note that remembrance is tied to communion. The One around whom we gather for the Eucharist is most notable at the table for his absence. So too, does the communion wine have a bitter edge for the divisions between us and those lost, those gone ahead, those not present, those divided from the body longing to be reconstituted as one.
I wrote this, I guess as a moment of brief theological and political resistance for today. Not a world-changing strategy, but a necessary step nonetheless without which no strategy can be complete: remembering those gone. Refusing to forget. Naming names and making sacred altars and quilts on this winter earth.
Here are a few names of those remembered in love and resistance–Carlos, Evelyn, Michelle, Ray, Joe, Mark, Mary: ¡Presenté!
So, This Happened:
Tressie McMillan Cottom, MacArthur Award winner, is a big deal. An act of kindness like this was a big deal to me. I hope she is enjoying the book.
Trying to Write Short: OK, I’ve heard your feedback. I’m not writing enough. I promise you I’m harder on myself than y’all are on me.
Here’s the hang up: rather than publish something relatively short and quick, I labor over every single sentence. A quick 30-minute burst could produce 600 words twice a week. Instead, I slowly build 1200 words once a month. I’m tired of “takes,” and I don’t want to be writing them.
I’m going to attempt a different strategy during Advent. Shorter, more frequent. Trying to avoid hot takes, though.
Book Me Now: Spring calendar is open. Preaching, book talks, or a concert with Carolina Social Music Club.
One Last Note: I only know one Thanksgiving song.