I spent the summer of 1994 being trained as a chaplain at the largest Level I trauma hospital in Atlanta. I was twenty-three when I began the program. At that point I had only peripherally met one person who I knew was HIV-positive, and I questioned if my life experience and one year of seminary had equipped me with anything substantive to offer people confronting a medical crisis, especially the physical, emotional, and spiritual challenges of an HIV diagnosis. That number would increase exponentially over the summer and each of my patients would become some of my greatest teachers about compassionate presence, faith, and grace.
Mr. Porter (not his real name) was in his mid-thirties and was slowly fading away due to complications of a late stage AIDS diagnosis. He appeared frail and fatigued, like a man aged far beyond his years. His beautiful, brown skin had turned dry and ashen. The telltale scars of kaposi sarcoma marked his arms, neck, and face. He would attempt to speak, but no intelligible sounds were heard as he muttered and groaned. It might have been AIDS related dementia or the morphine they used to subdue him that robbed him of the words. But behind sorrowful eyes I could see he was still acutely aware of the world around him.
The nursing staff warned me about Mr. Porter. They let me know, without question, that he had been a difficult patient. He was placed in isolation and was bound to his bed because he frequently attempted to get up and leave. On top of that, they said that when he was upset, he would spit at people. Other patients. Staff. It didn’t matter. Clearly this behavior was inappropriate, and it did not win him any tenderness from the nursing staff.
He was being difficult. It was also true that he had no visitors. No family came to advocate for him. No friends came to check in on him. I believe it was also true that he was hurting, lonely, and afraid. In my assessment, the spitting was an act of defiance. In his weakened state it was the only power he had to express his fear and anger. It was his attempt to reject a world that had already rejected him.
During the height of the AIDS pandemic, the constricting censure of the Bible Belt was felt throughout the South. Christianity, in and of itself, was not the issue. But it was the judgement, shame, racism, and homophobia hidden under the robe of Christianity that could kill body and spirit. The most vocal religious voices of the day were also the most damning. Religious legalism and hate were common features of radio and televised sermons. The theology of the day told Mr. Porter he was deserving of his suffering, that his condition was a curse and punishment from God. He did not speak those words to me but there were many other patients who internalized those fears and wrestled those demons.
Although I trusted the hospital staff to provide the treatment he needed, I could tell that some of them did not care for him. Seeing this man restrained in his bed I did not fear or feel threatened by him as the staff suggested. Instead, I felt compassion.
Entering his room, I introduced myself as a chaplain. He acknowledged my presence, and I took a seat beside his bed. From there on I do not recall what I said. At some point I gingerly reached over to see if it was okay to hold his hand. From the look on his face, it was clear he had not been touched except to feel a needle prick or medical treatment for some time. He made his hand available to me and I held it with all the tenderness I knew.
The thing I remember most from my visit was the look in his eyes. I believe what I saw in him was the hunger for connection, a desire to rid himself of the loneliness and shame that had been placed upon him. Through a simple touch, if only for a moment, we got to be human together. Fear, stigma, and condemnation washed away and what Mr. Porter and I shared was sacred.
As a chaplain, my job was to see and serve him as if I was serving God in the flesh. This was easy to do because, in fact, that was who he was.
Matthew 25:37-40 reads, “Lord, when was it that we saw you hungry and gave you food, or thirsty and gave you something to drink?And when was it that we saw you a stranger and welcomed you, or naked and gave you clothing?And when was it that we saw you sick or in prison and visited you?’ And the king will answer them, ‘Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.’
Although it’s been over twenty-five years the memory of Mr. Porter is still very close to me. It was interactions with him and the women and men I served in HIV/AIDS ministry for nearly a decade who broke my heart open to a fuller and deeper understanding of what it means to see the face of God by loving the sick, stigmatized, excluded, and those whom theologian, Howard Thurman, named the disinherited. The experience of working with Mr. Porter and the numerous AIDS patients whose beds I stood beside, whose hands I held, and prayed with was transformative in my formation as a pastor and my growth as a human being. Hearing their experiences of woundedness and rejection at the hands of condemnation or complacent theologies opened my eyes to the true need and power of God’s grace. I believe that every human being wants to be seen, known, and loved. Everyone needs to be assured of their worth and told, regardless of what conditions they encounter, there is nothing that can separate them from the love of God.
Since my chaplaincy experience that summer, I have learned volumes more from the HIV/AIDS community. I have built friendships and have had romantic partners who were HIV-positive. These relationships have shown me that the Church, in most cases, is still not a welcoming place for people living with HIV. Even in well-meaning and progressive spaces we treat our HIV-positive siblings as people for whom we should feel pity. Our words and actions often reveal we do not believe that when we see them that we are seeing God face to face, that when we touch them, we are touching God’s beloved.
I have a loved one who was hired for a position in ministry. In their bio they announced themself as a person living with HIV. After reading this, leaders of the church asked that they not disclose their status and amend the bio. That did not happen in 1994. That happened in 2020.
Can you imagine the damage done when a church that says it welcomes all God’s people asks someone to hide a part of themselves, their truth, and testimony? This is not how we see and experience the beauty, diversity, and power of God.
World AIDS Day might be the only time during the entire year when some churches talk about the reality of HIV in their lives and community. Others will not mention it at all. Churches that commemorate the day often do so by remembering those who have died from complications of the virus. As Black Lives Matter and other liberation moments show us, it is essential that we say the name of all who have been lost in pursuit of justice. But as the PCUSA seeks to embody the empire-upending words of Matthew 25, simple remembrance is not enough. For some of us the act of remembrance should also be an act of confession. We did not always act justly, providing the care that God’s beloved needed while they were here in the flesh when we could still hold, comfort, and caress them.
How might World AIDS Day transform if we tied our remembrance to repentance, sought reconciliation and restoration of those whom the church continues to silence, neglect, and exclude? In addition to remembering those we have lost let us also recognize the 1.2 million in the United States and 37.9 million globally living with the virus.
The CDC reports that in the U.S. during 2018 the highest number of HIV cases occurred among people ages 13-34. New therapies are being developed to treat and prevent HIV transmission. A person who is HIV-negative can now take a daily pill (preexposure prophylaxis or PrEP) to prevent contracting the virus. Clearly, the Church is not reaching our young people in ways that help them protect themselves. We will not be able to see and serve this generation if we are not talking about the issues that impact them most.
HIV remains largely a condition of poverty. And like the coronavirus pandemic, the disproportionate impact of the virus and deaths are felt among Black, Latinx, and Native American communities. How can we support these communities in living abundant lives, fully empowered with equal access to medical care, healthy food, clean water, and supportive resources? How can we liberate spaces in church and society so they can use their voices, share their stories, and lead us today and tomorrow?
On this World AIDS Day, I urge the PCUSA to cast aside silence, comfort, and complacency to engage in honest conversation about HIV, sexuality, poverty, and discrimination so that we can see and share in the sacred moments of life with our siblings face-to-face and hand-in-hand.
Rev. Bertram Johnson serves Union Theological Seminary in the City of New York as an Interfaith Minister. He holds a Master of Social Work and has worked for over two decades in the intersection of faith and public health. He recently joined the COVID-19 Prevention Network as a Faith Ambassador. He can be reached at [email protected]