Evan Hall (He/They)
Haitians: How Race and Ethnicity Have Awakened a Calling to Address Health Inequities, and What that Means for the People.
Before entering this narrative, I would like to take the time to deconstruct the categorization of Haitians, and why I have broadened my perspective to include race and ethnicity within this narrative. Although Haitians were included in the original 4H club, many more minoritized races and ethnicities were further impacted by HIV/AIDS than Haitians. Nonetheless, I wanted to keep the term Haitians as a historical marker and contextualize through this narrative of how race and ethnicity impact people living with HIV.
Confidentiality is a hallmark of medicine. It is a tool of protection, safeguarding individuals from a data driven society. The requirement of keeping something secret by medical professionals and those in adjacent fields can be monumentally difficult. In training for a larger non-profit organization in New York City, I was told not to even wave if I see a client on the street, which broadens what it means to keep our health confidential. Such a theme has played a uniquely terrifying role in the HIV epidemic. Confidentiality is what keeps many safe, but can also shield those who stigmatize the community of people living with HIV. There is no equivalent in the courage it takes to disclose one’s status or not. One is not better over the other. However, given the conventions of literature to establish a connection between reader and story, the practice of naming individuals is often a necessity.
This is where we meet Hope. As I began to conclude a final interview, I asked the individual for a name they would like to use as a cloak in the story I will soon tell to you. Immediately, it appeared as if the seven virtues from religious teachings would guide our course of thinking. Temperance, fortitude, justice, hope, faith, charity, and prudence are among the choices for parents. What I believe you may gain from this narrative is how the choice of name exemplifies themes, and too, creates a synonymous context to the person behind the story, not just the name.
Nestled in the back of a grey Jeep Cherokee, Hope commented to me and her case manager, “You know, I was picturing someone much different than you.” She went on to clarify that my authoritative voice and sophisticated presence over the phone would translate into a tall formittable man, perhaps sporting a nice tie and button down. The perception of who I was based on little information turned out to be completely inaccurate. I’ll wager a guess that we too could say the same stock phrase for people living with HIV.
Hope brought her 18 month old girl into the seat beside me. As a “little blessing from God” she would act as a fly on the wall, listening to our emotionally treacherous conversation. Only in this case, she would be sleeping rather than observing or listening at all. Hope’s daughter had a bow in her hair, which speckled with blue stars on a neatly threaded white background. Hope continued to adjust the bow throughout our time together as if she were a professional photographer, trying to capture the right moment. She would say that every moment is the right moment, a meaningful motherly sentiment I could only hope to one day understand. Hope’s expression whenever she looked down at her daughter included an effortless smile that raised the entire structure of her cheeks to the corner of her eyes. She let out a nervous laugh, one you might feel when you realize how grateful you are.
Coming from Africa as Hope did, she was required to submit a negative HIV test. She did.
It was time for a check-up on her health. However, when convinced and perhaps forced to go to the hospital with ailments beyond her control and too much stress, doctors approached Hope with a declaration: she was to stay overnight to run some tests. As Hope recounted that moment with me, I could feel her chest rise up in defense. What would be wrong with me needing to run tests? The defense of her health underpinned a larger undertaking of pressure of being an immigrant without US citizenship. Looking at Hope, I saw her puff up her shoulders in an attempt to show she had some physical dominance over the doctor. However, as her confidence subsided, I listened as she slowly exhaled and rested her shoulders as if we were being guided through a breathing exercise.
I resonated with Hope’s feeling of being subjected to unknown medical procedures. The acronyms of MRI or CT look just as ridiculous as endoscopic gastric bypass, let alone with a language barrier that establishes an opaque barrier in front of medicine. Sitting across from my doctor in a drab examination room felt like I was light years away from reality. As much as I could write notes of the coded language, my emotions ran wild to what all this meant for me. Ruminating on these feelings of certainty for a mere few seconds can be jarring let alone Hope’s experience of staying overnight in the hospital.
When sunrise soaked through the paperthin curtains of Hope’s hospital room, the doctor approached her to ask if they could run an HIV test. From her previous experience with needing a test for a VISA into the US, Hope didn’t mind doing an HIV test again. I could hear the distant trumpeteres in Hope’s voice, telling me that something was to come of that test-- something each one of us in that car knew.
In 2015, Hope was diagnosed with HIV.
The generalized monolithic perspective of immigrants as a group with a hard exterior began to crack like a mighty dam under too much pressure. However, as with most stories of adversity, this dam was protecting the emotions and feelings of a single individual, representing a natural dam or one made by beavers in a small creek, not a large industrialized one like the Hoover Dam. The next time my pen left the paper, I saw Hope crying. It wasn’t dramatic or theatrical. Rather, Hope showed me her tears were hibituals to the raw experience that rests in her HIV diagnosis. Her movements were swift, rubbing away with her well-oiled hand the tears on the ledge of her cheek. The “world crumbled” in her eyes that day.
Without much standing in the way of Hope’s ability to get down to business, she turned to me and prompted with a hand gesture, “listen to what I say next”. If there was not enough reason to generate a place in my mind for the curiosity spurred by her story, Hope surely solidified that I would be hearing her story loud and clear. Her case manager looked at me with a smile like the one you make toward a friend across the room in elementary school when the teacher says find a partner. We both turned our heads to Hope, leaning into what life was like after her HIV diagnosis.
The first direction we go into as HIV test counselors after we meet the emotional needs of our clients is toward partner services. Partner services is broadly defined as the process of contacting individuals who may have been exposed to HIV based on sexual interactions with the client while they were infectious. As one might expect, this idea of notifying a current or past partner can be daunting. We as test counselors walk clients through options as if we are holding a poorly burning torch in a dark damp cave of uncertainty. Clients can either elect to reach out to individuals on their own or can let the county health department do it for them. At the end of the day, the decision often comes down to disclosure. In one instance, you are protected by HIPAA at the county health department, and in the other, you are forced to disclose your HIV status.
These looming thoughts wagered in Hope’s mind. What life could she imagine after having to tell her husband? s Hope recalled the moments of ponderance, the folds on her forehead growing deeper, I could tell that she had been close to her husband. Eventually, Hope made the decision to tell her husband. “When are you going to test? '' she asked. She quickly went silent and leaned her weight into the back seat of the car. By convention, Hope chose her pointer finger to mimic the actions of her husband that pointed the finger at her, as if she were to blame for her HIV diagnosis. When I saw the finger move in our direction, I could see the tense muscle accentuate from her skin. The trauma of her husband’s argument migrated to how she recounted the story with us that day.
This piled onto the issues between Hope and her ex. Nevertheless, life persisted.
Not knowing how to drive, Hope saw no other option than to walk to work. Early in life, she saw news stories and dramatized movies that framed buses in the worst possible contexts, including horrific murders and cacophonous explosions. Even more troubling was the fear Hope had that other people would look at her and say, “Get her out of here”-- a nod to Michigan’s difficulty to support immigrant populations. Because of this, Hope started from nothing when she arrived from Africa. Work was the only option for sustainability in remaining in the US, but also a diversion from the stress that permeated from her life, including living with HIV. Hope used the term ‘trek’ to refer to anything around movement. It was a 15 minute ‘trek’ to work. It was a 10 minute ‘trek’ to the grocery store. The term referred to less of the action of walking than of the journey, one at the very least that served as a constant in her life.
A colleague where Hope worked approached her one day. Michigan is known for its nasty winters with bitter cold temperatures that sting our eyes, and snow which for a single day appears mystical but soons turns into a hazard. Her colleague noticed Hope scaling peaks and valleys of snow along an unplowed sidewalk by another apartment complex that sat on the main thoroughfare. Out of genuine concern for Hope’s wellbeing, the colleague asked Hope about her situation around transportation. No, Hope did not know where the bus system goes. No, talking Uber would amount to too much for Hope. Friends were almost non-existent for Hope. “I have no choice,” she said. It was a truth that couldn’t have been spoken any more clearer on that day years ago and to us in the car that day.
The emotional burden of the constant repetition of “I have no choice” piled up quickly for Hope. The faint light of the American dream had been dimmed by the poor work prospects and new HIV diagnosis, and perhaps only a flicker existed at some points. Hope knew the dollars she made in the US paled in comparison to the dimes she had made in her home country of Cameroon in Africa. She also knew that an HIV diagnosis was a death sentence in Cameroon from not only an underdeveloped healthcare system, but the stigma targeted against those living with HIV being violent and turbulent. Those realizations brought Hope to an uncomfortable conclusion: suicide. Growing up where high school suicides were close to home, I stopped writing when she said the word with such ease.
Upon telling her doctor about her suicide ideation, they referred Hope to UNIFIED - HIV Health and Beyond. As Hope wanted her life to end, a case manager at UNIFIED didn’t perform magic as most cinematic portrayals would. They took the genuine humanity harbored in the work they care deeply about, attempting to walk someone living with HIV from the edge, feeling more grounded in life than in death. Hope cracked a rare smile during our time together when she referenced her previous case manager. Such a smile made possible the co-creation of life that they would embark on from that day. The case manager acknowledged that Hope had gone through many things. Her fight for life that she brought from Cameroon still persisted. The family depended on her income and inspiration to thrive at home. The case manager stood up for Hope that day. Hope clamped her fingers together like a crab and bounced those fingers on her sternum to accentuate her point, “she stood up for me.”
UNIFIED helped Hope with her transportation. Her case manager picked her up for nearly any task, whether it be grocery shopping or work. Her schedule now was free to book appointments without worry, and with her case manager to support everyday activities, there was finally hope that streamed over the horizon.
Even so, there were more lingering questions for Hope other than transportation that lingered in the valley below the horizon.
“How do you even get medication?” Hope asked. The expense of highly active antiretroviral therapies for people living with HIV is a lifetime burden, and although for the most part they are covered by private and state insurance, there is a constant battle between insurance and consumers on the need for the medication. They first attempted to enroll Hope in Medicare, a form of government insurance mostly funded at the federal level and managed by the state. However, because she was not a citizen, she was denied. Rather than streamline health as a priority, the matter of who would foot the bill remained the question. Hope and her case manager were sent on a hunt to find the pot of gold at the end of the rainbow that didn’t exist.
“But, then,” Hope sighed in relief. The quest to find insurance coverage led them to MIDAP, the Michigan Drug Assistance Program. The program they found is specifically tailored for individuals living with HIV/AIDS to support in acquiring medication. There was an ease to Hope’s voice when she said she finally got her medication. The heavy breaths and trembling ends of phrases were fading as her feeling of security set in. With medication, HIV was no longer a death sentence, but a manageable chronic illness.
Hope became undetectable. For her, it translated to some form of normalcy, and it felt good. She was living her best life. More accurately, she is living her best life.
The imminent food struggles followed Hope along this journey of finding insurance to cover her HIV medications. In jumping through hoops and navigating the complex requirements for food stamps, Hope was authorized under emergency use to receive food stamps. Hope turned to me, as she did most times to emphasize a point, and told me that it was her case manager that fought for her on all fronts. For the first time in a long time, Hope had someone checking-up on her. Just because she received necessary food and medication, didn’t mean Hope didn’t need support. As it would turn out, when denied in a re-enrollment period for food stamps, Hope had to scurry to find food. She ended up finding a university food service to provide healthy food. Sitting in the front seat, her current case manager shook his head, articulating how the quick-fix to a multi-layered problem like that of food insecurity never proved sustainable. It was “so hard” without a car to reach the food service that Hope would have to wager food with other essentials. For the first time in our conversation, Hope rested herself on the headset on the back of the car. Her neck appeared to be carrying cinder blocks from her mind of a constant battle to stay alive.
The fruits of Hope’s labor could not escape the challenges of food security, nor could they wash away feelings of her ex-husband that were chained to her HIV diagnosis. Hope does not know the status of her past lover and confidant, but for the very good of humanity, she hopes he knows his own status. The divorce months later after Hope’s diagnosis would solidify his silence on that matter. Without the support from her husband, which one could argue was very little to start with, Hope looked for a job and a place to live, sleeping on a friend’s couch in the meantime. There is no questioning the deep rooted emotions Hope harbored for this man. That day, Hope spoke with her hands, and everytime she mentioned something related to her ex, her hands would go into a fist. However, it was never a proper fist. Her thumb was always visualized clearly to us, as if to say her profound emotions were held together by an insistence of peace. She chose to share her feelings without articulating a notion of formal violence.
This type of gesture signaled to us what Hope called her “sense of forgiveness.” Over the years, and with distance growing into reality, Hope discovered her limits with her ex-husband. She explained, “there are things to do no good,” where many of those things if acted upon would have been painful for her. With a new boyfriend in Hope’s life for the past three years, the process of her health has become a positive experience. “This is all me.”
A “little blessing from God” would enter Hope’s life, and 18 months later, Hope and I would sit across from each other in the silver Grand Cherokee relishing in these moments. After becoming pregnant, however, Hope would experience more struggles for medication and insurance, where MIDAP would once again step in.
Such frustrations at this extreme subsided when Hope’s case manager pushed forward his neck, and noted that something huge happened for Hope: she became a citizen. As I reflect on my interview notes with Hope when she pronounced her citizenship, she says, “No shit to you!” I do not have the foggiest idea what this means for her, but at the very least, the triumph in her voice was a call for a revolutionary future.
Hope centered herself with an open spirit and an open mind. She became literate not only in the classical sense, but also in the emotional language we share as humans. Her work established her as the breadwinner not only in her American household, but in the transcendence across borders back home to her family in Cameroon. Hope’s ability to open up to her boyfriend was clearly working, as her emotions and story painted the canvas of our interview. Hope had to stand up and fight to supply herself and her daughter the food and medication to keep them afloat.
I am not sure how to determine the wear of humanity by looking at an individual, but the cores of the eyes yield a great deal of information. Hope’s eyes barred conflict and resolution, specifically as she explained that her sister is the only one in the family who knows of her HIV diagnosis. Hope has a good relationship with her dad. How does a good relationship stand up to the tests of revealing who we are?
At 43 years old, Hope asked me to touch her baby. I let my hand feel the weight of gravity. Then, like moving your hand through a pool of honey, I transformed my hand to the weight of a feather. I grazed the side of my inner left hand palm to the head of her child. The smooth skin made the gesture effortless. Although I can only imagine the significance of a stranger touching her child just having heard her life story, I recognize I will never know how valuable it was to Hope. It meant a great deal to me. Hope claims, “Why, I am no superman,” but the reality of such a statement remains more complex. Her actions are heroic, yet should Hope have had to overcome those laundry list of challenges in the first place?
Hope is living with HIV. And it is hope everyday, no matter how much, that provides what is necessary to be a mother, a daughter, and truly a human.
The humanity sourced through this process exemplifies the paradoxical nature of these populations 40 years later. They are rooted in strength from innovation and community outreach, but are challenged by a society for which stigma is still pressed against their cheeks. Homosexuals, heroin users, Haitians, and hemophiliacs have largely remained untouched as the guidings stars in HIV prevention and treatments. Modern day language would frame the four populations as minoritized gender/sexual identities, people who use/inject drugs, marginalized races/ethnicities, and hemophiliacs. Although hemophiliacs are often left out in modern research and implementation due to the easy to control mechanisms of transmission through the blood supply, their story remains necessary to remember. In fact, all of these narratives remain as pillars from which we should frame humanity in the modern HIV epidemic in the United States.
The 4H’s 40 years later in Southeastern Michigan have morphed into a contemporary sentiment of how time has been unable to erase the stigma that continues to permeate in and around these communities.