Evan Hall (He/They)
When the 4H’s were coined at the beginning of the AIDS epidemic, one thing was clear: society wanted to ostracize populations most affected by AIDS. Homosexual. Haitians. Heroin Users. Hemophiliacs. Now, 40 years after the beginning of the US HIV/AIDS epidemic with advanced medical technology to treat HIV and a large decrease in HIV cases, where are these four groups now? More specifically, how are these four groups contextualized to Southeastern Michigan?
Bringing it back to the modern day: When COVID-19 first broke out in the United States, we readily saw individuals who were most susceptible to the virus dying first. These deaths were concentrated in older populations and individuals with underlying health conditions. At first, it appeared that if you were within those populations, you were the target of the Sars-CoV-2 virus. However, as time went on, and with expanded knowledge of how COVID-19 spread, we learned that all populations were impacted, depending on the type of behavior one engaged in. For example, one could wear a mask indoors at a crowded restaurant, or one could talk with a friend outside with a mask on 6 feet from one another. Eventually, the behaviors of individuals led to outcomes with COVID-19, not necessarily populations themselves.
This trend was accentuated at the beginning of the AIDS Crisis in the early 1980s. In the first reported cases of what they would later classify as AIDS, Morbid and Mortality Weekly Report cited that “5 young men, all active homosexuals”, 2 of which died, mysteriously contracted a rare form PCP. Even from the first reported case, certain populations were targeted.
As more and more cases piled in across the country, society at large began to notice the populations most affected by HIV: homosexuals, Haitians, heroin users, and hemophiliacs. Messaging around the AIDS crisis became clear: If you belonged to one of these groups, you were eventually going to come in contact with HIV. This framed how systems and institutions would discriminate against these populations. People outside of these populations would stigmatize them for years, and I still argue today, for matters far out of their control.
Public health officials and scientists would later discover that certain behaviors were truly the hallmark of HIV, not what populations you fell under. Nevertheless, as recent data and trend of new HIV cases demonstrate, the 4H’s are mostly representative of the modern day HIV epidemic. My investigation of these populations in Southeastern Michigan uncover how the stage lights of society have kept some in the limelight, and others in the dark. For each narrative, I have reworked the stigmatizing terms used to denote the populations, to reclaim the identities of the groups lost due tothe explicit discrimination ofthe early AIDS epidemic.
The first of the four narratives describes my own story of growing up without learning about HIV until I was 18. Next, in the second narrative, I find Detroit is home to a rich history of Black culture, but is riddled with years of corruption and racism, exacerbating the syndemic pressures on its people. The Detroit Recovery Project is a Syringe Service Program working on the frontlines to make an impact in these communities. The third narrative unveils Kathy’s life as the wife of a hemophiliac during the height of the AIDS crisis, embarking on a journey of distrust, hope, and empowerment. The final narrative captures Hope’s story of grit with overtones of persistent struggle and her perseverance.
Sitting in coffee shops, cars, vans, on the side of the road, I captured the narratives of the people living with HIV and the broader impacts of HIV in Southeastern Michigan.
Homosexuals: The Embodiment of Paradox - Progress and Innovation Matched with Ignorance and Deception.
Of all the people who should be giving important news about HIV, good or bad, I feel immensely unqualified. I am not a doctor, or even someone with authority. I don’t even hold a bachelor’s degree. I am still a kid at heart, yet I could change the world for someone by delivering their HIV diagnosis. Today, I am tasked to design an HIV/STI testing environment at the Spectrum Center; created in 1971, the Spectrum Center was the first LGBTQ+ focused resource area on any college campus in the US. Am I the person that should be doing this?
"Venti Strawberry Acai for Evan!” I am in the crowded, mostly overwhelmed Starbucks on State St. in Ann Arbor. Per usual, my mobile order is faster than ordering in line. The nice barista smiles at me. Sometimes, I interact with a gay barista who had shared more than just my order with me. Luckily, Maria slides my flamboyant flamingo drink across the damp counter. Light ice, good. No strawberries, good. As a creature of habit, I rarely deviate from my Starbucks order. Venti Strawberry Acai with light ice and no strawberries. I am committed to getting it right. I feel a soothing, comforting consistency in an otherwise unpredictable world. There are no surprises in the first sip moment, unlike some of the guys I made out with when I was younger.
I take the short walk down State St. to the Union at a brisk pace. A common internet trope of gay men is that they are incredibly fast walkers, I am a prime example. The route from Starbucks to the Michigan Union is a straight-shot. It takes me five minutes. It is a predictable walk. In this short time, I recall the many trips to the doctors in the reality TV show POSE, a cinematic mashup of the Black ballroom scene and early AIDS epidemic. The character's journey to the doctor’s office would be similar to that of the clients I would test. However, in the 1980s when POSE was set, the HIV antibody test took 5 years to develop and was highly unreliable. The test is 20 minutes long now and very accurate, but will that be enough time to grapple with a history far beyond my control? My journey from my first exposure to my first test I will give is 5 years. Who’s keeping track of time? I feel the weight of my reflection diffuse from my brain down through my spine all the way to my feet. My sprinting pace is resisted by a daunting reality of what I would accomplish today at the Spectrum Center.
I pondered the importance of why I was in that examination room more than two years ago. As a doomsday scenario officenado, I rapidly depicted all things that could go wrong, especially with this important test result. The man across the room from me, sitting in the same out-of-touch office chair from the late 90s' as I did, filled out some paperwork. He told me he was an orthopedic surgery resident somewhere in New York City. Probably, he did his craft at a fancy hospital, where they see bone breaks never seen before and do reconstructive surgeries that make the morning show headlines that would be plastered on the big screens in Times Square. Why sit in a dingy high-rise room with me for a test result that would show up on a tiny strip?
I never take the elevator. In order to keep healthy, I choose to take the stairs wherever I go. Even if the Spectrum Center in the Union is 3 floors above ground and it feels like a hike up Mount Evans without the scenic view at the end, I climb. By this time, the cemented thoughts weighing me down have leaked out of my sneakers, covering the floor. I am the only one to notice how my first HIV test at 19 could have been too late. A young ambitious person like me could have had their worldview dramatically reframed by a virus that not too long ago killed millions of my kin. My first test that I had and the first test I will give would encompass a history of queerness in conflict with society. I am within history, but which side am I on? As I approach the Spectrum Center, I see the frame of the door. Since its new renovation, the historical finishes in the Union have been glossed to glisten and former deteriorating windows now imitate an ombre finish. I wonder if my new skills as an HIV test counselor would be the same restorative glory needed to touch up a history of oppression in the HIV epidemic. A lofty, wholehearted attempt for myself to feel worthy of the job.
I took the elevator that day on the way to my test. In New York City, when your destination goes beyond counting floors on your hand, an elevator is the light rail to the sky. The elevator moved slowly that day. In the days before COVID-19, an elevator could be packed. This was one of those days. My shoulders brushed against people I knew and strangers. There was a muted silence broken only with a small ding, signaling we had passed another floor. I was with a group on my trip to New York city. We were volunteering in whatever capacity, for the fun of it or a resume slot, over our spring break at the Gay Men’s Health Crisis (GMHC) Inc. The organization was formed by Larry Kramer in 1982 with the support of donations to combat not only the deadly AIDS epidemic, but also an unresponsive government to the crisis. GMHC is the largest and oldest AIDS organization in the country. They were the first. This would be my first.
When we all reached our destination, we filed out of the elevator. Most of us from the group had elected to get tested, whether it was out of curiosity or pure fear. The chairs in the waiting room had brown cushioning contrasted with a black metal frame. There were cubicle walls surroundings the waiting room on each side. From the reception desk, I was handed a clipboard and pen. I was asked to fill out the in-take form. I did.
Walking into the Spectrum Center office two minutes before the meeting began feels typically punctual for me. I see Leon situated on a nice blue seat, padded with a cushion so soft, I am surprised he stands up and greets me. Although he is masked, I can see the motion of his cheeks rise toward the sky. He is smiling. I would be the new lead test counselor at the Spectrum Center in almost two years because of the pandemic. There is no room for error, whether it's designing a space or giving results. Why commit myself to this daunting task? I smile back at him.
I met Leon my freshman year of college. It was a cold February day, a week before I left for NYC. He was presenting to our learning community in the dorms. Standing in the front of the room, I noticed him first as a spunk aging black man who reminded me of Billy Porter with eccentric hand gestures and a commanding voice. The presentation topic: his life and HIV. When Leon was diagnosed during the height of the HIV/AIDS epidemic, he toed the line of life and death, with few living to recount the atrocities of the time. He survived. He survives. Now, as the Prevention Director at UNIFIED HIV Health and Beyond, Leon has the unique position of implementing programs to mitigate the spread of HIV. Not even two weeks earlier was when I first heard about HIV. My mind was statured with thoughts of that lecture. I sat in the third row back, just close enough to be considered the teacher's pet but not too close to be watched for my every move. The swivel chairs with a cemented backing made it difficult to focus when my attention began to wane. However, as Adam Eickmeyer, my future mentor, stood on the stage with his voice booming through the microphone, I was lured into his discussion on sexual health education. I remember his words coming across clearly in the Angell Lecture Hall A. He said it aloud, “Human Immunodeficiency virus”. At first, I didn’t feel much connection with the scientific terminology. Then, my body began to pulse. It was how it was transmitted that focused my attention elsewhere: anal and oral sex. My eyes began flipping through a scrapbook of memories through my past sexual encounters, which began to blur from my tears resting on the bottom of my eyelids. What was my body telling me? I committed to memory the events of the past, including my sexual behavior, driving myself mad to find where my risk was on a slippery scale of uncertainty. The only fulcrum I could grasp was HIV. It was a sanctuary of deceit, but a home for me to nestle my identities in.
I was 18 years old when I first heard about HIV.
The director of the Spectrum Center, Will, greets Leon and I by the front desk. The student employee happily checks us in without us even realizing. So, it begins. I take mental notes as much of the process of designing the testing space has been brewing in my thoughts for days, weeks, and years. There is no going back. Even before, there was no going back. The moment of the first kiss or the taking of the test counselor exam, I was solidifying something within myself. The moment I came out as gay, my seuxality not longer confromed to what society had proscibed to me.
I felt anticipation that day when I was tested for HIV. I sat near the edge of my seat as each new syllable punctuated in a different delicate direction: an-tic-i-pa-tion. Unfamiliar with the dry air of the examination room with no windows, I began uncovering the muddy guilt that coated my hands as I sifted through my memories. My normally perfect posture was arched by the pressure of recounting my sexual behavior from years prior. Were my feet planted firmly in the ground to show my stubbornness to the test counselor in the room? Or were my legs tucked under the chair to regain some sense of grounding? I wonder if my breathing was slow. I remembered my heartbeat revibrating against the walls as if I had thrown a ball that defied the laws of physics and continued to bounce non-stop. Each heartbeat paired with each unearthed breath felt like years had passed. However, from a trick I learned in 2nd grade to center myself, I counted the seconds in my head, “1 Miss-iss-ippi, 2 Miss-iss-ippi, …”
The summer prior to this meeting at the Spectrum Center, I took all the necessary training to become an HIV test counselor. Three training sessions spread over months tested my basic knowledge of HIV, delivery of prevention goals, how to administer a test, and the best ways to explain a test result. All the sessions were held over zoom, which made the whole process less intimidating. I was the youngest in the room by far. Many were there because their work required continuing education credits, and others, like myself, had a mystical calling to become an HIV test counselor that in terms of sharing my personal motivation over zoom fell flat. I tell the same story to everyone I meet, how I learned about HIV when I was 18. People gasp, their eyes open wide, as if my story is shocking. It wasn’t shocking for me, I lived through it. For the last training, we were required to perform a mock test counseling session, where each individual was prompted to deliver a test result. The role play of “test counselor” and “client” was more of a historical recounting than a fictional scenario for me.
Will points us to the room he believes would be a great place to hold testing. I peer into the room. The walls are two toned, blue and a mild grey. The office furniture is a blunt metallic stone with a soft finishing. The chairs have wheels, which are easy to move, making it accessible for me to pivot between paperwork and the client. I note that the door is not HIPAA compliant. Leon shakes his head in agreement. Both of them ask what I think should be incorporated into the space. I list out posters about PrEP, and brochures fortrans-identifying individuals. I add that a separate trash can will need to be in the room along with a smaller sharps container. I speak in formalities. I spew my knowledge forth as if everything hinges on my creation of the space. My brain attempts to formulaically design the space, while I can barely orient myself out of the client’s position.
I don’t recall a single item from my examination room in NYC. There were brochures for sure. Ones in a rectangular shape with colors that every time I reexamine the memories blur as if my vision had rapidly deteriorated in the time I took to place myself in that room again. The posters that were hung to my right probably included representative images of those who were most susceptible to HIV, such as those in the LGBTQ+ community, like myself. There was probably a blurb on how to protect yourself against HIV. I don’t remember any of the words. No one tells you how the feeling of weight can change. My back slouched into the chair. My spine became a rusty fish hook, oxidized with misconceptions and could cause disease with a single prick. I felt my body was a vehicle of destruction from my sexual behavior. I know there were armrests in the chair because my arm rested gently on one of them. As if I was being interviewed, he asked me to identify different behavioral changes I could make to prevent HIV. For me, total abstience was unlikely, and with little knowledge of sex to begin with, I felt like I couldn’t cough up what he wanted me to say. I admitted to having no clue on how to find solutions to the challenges of condom access. He told me about PrEP, which stuck in my mind like sand against a painted wall. As if the entire conversation I was not waiting for him to deliver my results.
I imagine the poster on PrEP to be hung to my right, so when I counsel individuals on HIV prevention methods, I can easily direct their attention. Will there attention be on me though? They may have gone out to the club the night before, hooking up with a stranger. They could come into my testing room afraid that they were exposed. Where will my words go? I will hand them condoms if needed, with enough lube for a pinkie finger. I may have cool flavored condoms, which no one ever uses. I will talk about a cool condom bag I once received designed by Marc Jacobs in order to improve condom usage. I will mention that I know a friend who has a group of friends that keep track of each other when they go out, so they know who they go home with at the club. Will they use what I provide them to have safer sexual encounters? The scenarios that coat the testing room echo in my mind as I imagine the lives of those I will impact. Or at the very least, I hope to impact their lives. My passion may radiate from all of the work. I sit on councils. I work in the field. I am there with the people, and the people include me.
The HIV test is relatively straightforward. A small prick of a finger accompanied by a massage to capture enough blood in a capillary tube. The blood is transferred to a test strip. Then, we wait 20 minutes. During this period, the test counselor will discuss intimate details of an individual's sexual life. Often it feels more like an interrogation of sexual behavior, then a reinforcement of best practice. Nonetheless, the government, for better or for worse reasons, wants test counselors to track goals of preventable behavior. My role in this performance is to create a dialogue surrounding behavior-- preventive behavior. Have I made the right choice? Did they make the right choice to pick me? I go from knowing nothing about HIV to becoming a pseudo-expert, and hopefully one day, a career expert. My position as a test counselor can be seen as a stepping stone to my long term career, but as I lean my foot into the stone, I feel as if I am being stepped on.
He asked me about my support systems. Anyone could easily tell you the scaffolding of a skyscraper is designed to support a significant amount of weight and can be flexible with the uncertainty of wind. Steel comprises its core, only to buckle under disastrous conditions. I sat there as my fingers ribbed together. I was trying to start some spark that would guide me in some direction to answer his question. My support systems had grown thin as the exploration of my sexuality became public. My mom questioned my outfits as if too much color or floral prints were somehow “too fruity.” My dad called a pair of shorts “fluffy” as if I was a bear. If only that joke was ironic. I told him about my good friends, which had held my mold together for years through phone calls and never-ending walks. I often refused to stop and sit until the conversation was done. He framed a probable but all too scary scenario as our conversation continued: What if I had tested positive for HIV? I had no clue. Was I supposed to guess how my entire life could change in the time it takes to string together a few words?
The directive of the question, I learn, isn’t to scare our clients but to settle their notions and fears about HIV. It is no longer a death sentence in the United States. The ability to live a full and happy life remains beyond the little red dashed lines on the HIV test strip. The ability for me to know what these questions mean is powerful. I see what motivated the questions of the man across from me in the testing room in NYC. Have I discovered why he was there in the first place? Unlikely.
I see Leon look over to me at the Spectrum Center. As if my craft as a test counselor meshes into my fingers, I feel he knows how well I do in the position. I have committed myself out of a sense of urgency. The anticipation still rumbles in my stomach, as if my hunger is subdued by HIV. I think of what situations that will come. How do I comfort those with anguished tears from a forgotten love from their parents? How will I guide those whose sexuality is what they hate most about themselves? The necessity I feel to embody the space becomes almost too much.
“Are you ready for your results?” They taught us in our training to always ask this question before delivering results to our clients. Our instructors cited that some clients will ask for a moment to collect themselves, and others will ask to take another deep breath. I was asked that same question in the examination room. Without hesitation, I responded with, “Yes”. At the very least, an answer would stop the onslaught of scenarios my brain generated ruthlessly to circulate the immense guilt I had.
My body begins to flirt with gravity as my ankles sway to an unwritten minute. My teeth grip my tongue as if to find the taste buds that remember a time before I knew about HIV. My mind empties.
At the time of this test, you are not currently living with HIV.
He said it with such clarity. It brings together the purpose of the session but leaves remnants of what could have been.
Will and Leon ask me to compile any requests I have for the new testing room in an email to send out later in the week. I finish the email hours later. My sense of responsibility floods in from outside as if the sun travels to me, leaving everything else dark. The email I create is chipped into a stone; not one of any remembrance of value like the Rosetta Stone, something simpler, like a skipping stone tossed across the lake, sinking to the bottom because of its weight. The decisions I make today become history, whether intended or not. I feel that if a rainbow were to pop up in the sky, the moment would be too good, as if everything has come together.
He opened the door of the testing room. I grabbed my light black puffer jacket and exited the room right behind. I didn’t look behind my shoulder. What was there to see? There could be remnants of my butt pressed into the seat. A speckle of dead skin nestled in the crevice of the chair. Would it be an empty theater before the last light goes out when the stage manager leaves? I cannot remember an empty examination room. I felt inseparable to the place. The silent chamber positioned in the noisy city that never sleeps felt oddly like a home.
I find myself alone in the Spectrum Center testing room. Leon left after our brief discussion, and Will is occupied with a busy schedule of meetings. To this day, I do not conceive that my negative HIV diagnosis was sent to me from a high power. I visualize the Morbidity and Mortality Weekly Report (MMWR) from 1981. “5 young men, all active homosexuals,” I see each patient case report bolded. Patient 1. Patient 2. I wonder how 40 years later I could be adding others to that list. I feel my ability to ignore what was standing right in front of me for years haunts me. It lures me in, where I forever chase its meaning. I listen to the words that the test counselor said to me years ago in New York City. I think of the words I will say to those in my same position. I commit the words to memory, but I feel they will come out different every time. I listen to the testing room.
I hear nothing, but miraculously see it all.