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To Heal a Mocking Bird

By Randevyn Pierre

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Black Healthcare Stigma and Its Impact: "Fowlkes' 40-Year Fight for Health Equity in HIV"


Fowlkes' papers documenting his life's work and experiences will be admitted into the Smithsonian Institute, African American Archives

Journey to Atlanta

 

After Earl Fowlkes’ parents divorced, his mother’s sights were set on the South. A Florida home that included backyard alligators and year-round humidity was out of the question, but an Atlanta settling felt just right. 

 

Some time later, after fighting with finances and adolescents, she pleaded with her eldest son to leave New York to help her keep things in line in Atlanta. Earl agreed, and soon, he had a new life in the Dirty South. 

 

Earl experienced Atlanta as a unapologetically African American town with an overwhelming admiration for HBCUs and a die-hard commitment to church culture.  

 

While he could always count on the charming A-T-L for its hidden fortress of well-stocked, black gay bars, he often reflected on the diversity of culture, art and the unique sense of patriotism in New York that he’d fallen in love with during his upbringing.  

 

Earl attended Atlanta’s very first Gay Pride parade, and would become instrumental in connecting Black Gay Pride movements throughout the South–and all over the world. 

 

A Chilly Cultural Shift 

 

It was the early 1980s when two of Earl’s employees at the Peachtree Plaza died from complications of AIDS. To his bewilderment, the other staff went on with their daily routines–opening tabs, serving customers, and acting as if their colleagues never even existed. 

 

Earl: “The early 70s were an interesting time in the United States. Although begrudgingly, gays were finally being acknowledged…but after the onset of GRID, people didn’t wanna hear anything about, ‘gay.’ They felt it was a sin, people felt it was criminal.”

 

Earl paused to remember the moment he arrived at the front door of his two diminishing coworkers (whom he’d discovered were a couple only once they began to fall ill). 

 

As an assistant manager, he’d been the only person willing to bring them much needed information to file their disability claims–which Earl considered a mere act of human decency. 

 

Earl’s tone shifted to a slower pace as he recalled how the two young, formerly healthy men’s bodies transformed from buff to brittle in a matter of months. 

 

Mockingbird: “When you look over the past 40 years, what do you think was the catalyst for the behavior of detachment from your colleagues?”

 

Earl: “Shame…fear..” he hesitated a little more, as if reliving those tough moments…”and ignorance.”

 

Back to the Battleground 

 

With GRID shaking up gay life in the South, thoughts of the Big Apple seemed to out-flavor Atlanta’s souring peach. 

 

Earl began following the trend of progressive thought up North, as news of the ever-growing gay liberation movement started flooding the mainstream media. 

 

Now fueled by the AIDS crisis, outrage on both sides of the aisle was exploding into a whirlwind of activism. 

 

Current events related to people, oppression and change piqued Earl’s passion. Soon, he was saying goodbye to his Atlanta family as he headed back to New York. 

 

Even though Earl didn’t realize it at the time, the increasing depth of his draw to human equity would become the centerpiece around which he would build his life’s work. 

 

GRID Gossip

 

Earl: “I was told that Black people couldn’t get HIV. We would go out [to the bars] and joke, ‘at least we know we can’t get AIDS,’ but none of our friends would admit to also sleeping with white guys.”

 

Mockingbird: “I seem to also remember hearing the same thing from our community about Black people and COVID at the beginning of the pandemic.”

 

Earl: “Yes, that is correct!”

 

Unfortunately, medical misinformation (the first cousin of medical mistrust) is a familiar face in the Black community. 

 

There are times when misinformation can be just as (or potentially more) harmful to our community as the lack of information. As has been demonstrated during the COVID pandemic, research has shown that misinformation tends to thrive during times of crisis. 

 

Just as during the onset of the HIV/AIDS epidemic, fear, confusion, and sorrow can cause people to be more vulnerable to accepting perhaps comforting, yet far-fetched narratives of widespread conspiracies and other falsehoods as truth. 

 

With the advent of social media, medical misinformation has the ability to spread significantly faster, causing more damage in a shorter period of time. False information tends to travel quickly, whereas  truth, by its nature, unravels at a slower pace. 

 

As we enter the next phase of public health and technology, these conspiracy theories and falsehoods are likely to build and intensify. 

 

It is important that the African American community be better equipped to understand the science of disease, treatments, and research in general to protect against misinformation, which has potential to impact our health outcomes.

 

A Father’s Confirmation of Fear (Meets a Son’s Confession of Freedom) 

 

Earl’s Father, Earl Sr., is a soul-stirring, now 85 year-old preacher. He’s the kind of man who silently and passionately loves his family, is certain about his convictions, and is not ashamed to speak about them boldly and openly. 

 

One afternoon, while a story covering the AIDS epidemic came on the radio, Earl happened to be riding in the car with his father and his wife. 

 

“People who get AIDS deserve it,” his father commented as the report aired. 

 

Before he knew it, the passion Earl felt for human equity lunged him courageously forward from the back seat. 

 

Earl: “So babies who are born with HIV deserve it?”

 

Before his father could respond, an unexpected voice protested, “Shut up, Earl, Sr.!” 

 

A disapproving wife was now scowling at her husband from the passenger’s seat as she turned down the radio.  

 

Earl had already begun helping people living with HIV cope with their loss, fear, and despair through his work in the community. He knew now that he had to find a way to share his truth with his family. 

 

Mockingbird: “What was the conversation like with your dad?”

 

Earl: “There was no ‘coming out,’ because I was never really ‘in.’ Even though my dad was a preacher, he had a daughter who was a lesbian (my sister, Sharon) and me. 

 

The reason I had to tell my dad I was HIV positive was because I was working at an ASO where no one wanted to disclose their status.

 

I started to think—this is ridiculous! Someone needs to step up and let people know that you can live with this disease!”

 

Earl decided that ‘someone’ would be him. 

 

During this time, this type of courage was rare, because stigma was palpable, people were terrified, and there were no FDA-approved treatments for the disease.

 

A message of hope needed to get out faster than people were dying; those still alive desperately needed a reason to hold on at a time when it felt like the entire country had turned its back on a dying community. 

 

 

The fastest way to get a message out was on the radio, and there was a potential opportunity to share the story of his HIV status on a public broadcast.

 

The risk of someone from his father’s church hearing his story first and rushing back to tell his dad wasn’t one he was willing to take. 

 

Earl needed to make a special trip to South Jersey—where his father lived. 

 

From Pastor to Pops

 

Earl Sr.’s glossy eyes were welling over, until finally the first drop surrendered. 

 

Facing each other, the father and son were finally experiencing their moment of full transparency, where they began closing the gap of unspoken truth between them.

 

Earl Sr: “You need to move back to Jersey so that we can take care of you.”

 

Although he was totally opposed to the idea of coming home (and didn’t need to be taken care of), this was a pivotal moment.  

 

While many others were actually being left to die alone, this conversation reaffirmed Earl’s father’s instinct to cover, comfort, and care for him–unconditionally. 

 

Earl left his father’s house thankful.  

 

HIV’s Early Days of Trust and Treatment 

 

Earl: “There were no treatments. 

 

Hospitals  were being flooded with people presenting with different symptoms. They started treating people with a cancer drug that wasn’t very effective called AZT. 

 

 When my roommate got sick, he was being treated with AZT; 10 pills a day. 

 

He died. 

 

Later on, doctors realized patients’ bodies could only handle up to 4 AZT pills per day.

 

The medications were very toxic, but the doctors just didn’t know at the time. 

 

They were learning as they went.”

 

Mockingbird: “How did you feel about taking pharmaceutical treatment for HIV after seeing your roommate who took this medication pass away?”

 

Earl: “I had access to the little information about the disease that was available at the time, mental health support groups, my body held up its t-cell counts, and other resources that a lot of others didn’t have. 

 

I lived in New York, had the best infectious disease doctor in the state, had private insurance, and ended up getting put into a clinical trial but I was taking the placebo. 

 

Much later on, I was put on an actual treatment. All those factors made a difference.

 

When I found out that I was the only Black person in the study, I confronted the hospital. I had to advocate for other Black people to be added.”

 

The hospital initially refused to cooperate, and withheld information around how many Black people were enrolled in the clinical study (a historical experience also depicted on the FX television series, “POSE”). 

 

Gay white men were being prioritized, and as a result, many who were enrolled in the trials survived the disease long enough to take advantage of more effective therapies once they were discovered in the late 1990s.

 

Hope (Left Hanging and Hemorrhaging)

 

At the peak of the HIV-related death tolls, one of Earl’s daily tasks at the ASO where he worked was to look through the obituary to check for clients that had died, clip their picture, and close out their file. 

 

Mockingbird: [Deep sigh]

 

Earl: “To this day, I still look at the obituary section of the newspaper for AIDS-related deaths.”

 

Mockingbird: “What were the feelings of your loved ones in their last moments about how they were treated by the medical community?” 

 

Earl: “Imagine working in an office where you know that everyone who comes through the doors is gonna die.

 

I remember telling one of my clients who was dying that I didn’t know if I could continue doing the work anymore because I wasn’t making a difference and I couldn’t keep watching as people die. 

 

He told me I had an obligation to help everyone I saw, even if I only saved one life in all the time I worked in HIV/AIDS.

 

Most didn’t fight; they were just relieved to escape the suffering. 

 

Those who were dying were getting their release. 

 

It was the living who had to live with the guilt of estranged relationships–abandoning those they loved simply because they didn’t understand them.” 

 

Humiliation in Death 

 

Earl shared a number of reasons why people living with HIV may have felt resentful toward the medical community and not having confidence in their willingness to care for them at the end of their lives. 

 

In one scenario, he recalled asking a nurse to change a friend’s dressings who had been laying in his own stool for several days to which the nurse responded, “Do you expect us to change him every time?”

 

He also remembered perfecting the art of changing linen (by strategically rolling a body from one side to the other) while working at a hospital part-time in college. 

 

Fortunately, Earl was able to put this skill to use while visiting with friends in the hospital, giving their families a break as they spent time with loved ones during their final days. 

 

Shift Nurse: “You changed him 12 times in 3 days? You’re a saint!” 

 

Sticking her head into the room as watching him finish up a linen change her staff should have performed for a friend, Earl was unsettled by the statement. 

 

Earl: “I’m not a saint. This is what I’d want you to do for me.” 

 

The Response of the Black Church

 

Earl relocated to DC, using his understanding of church culture to connect with faith based organizations, encouraging them to start “health ministries,” that were designed to address HIV/AIDS. 

 

Some Black churches responded well, but most did not. 

 

Earl: “I wasn’t there to get them to like gay people. 

 

I wasn’t there to get them to accept gay people. 

 

I was there to remind them to treat human beings with humanity, especially those who are suffering–without judgment.”

 

On the 40 Year Mark

 

Mockingbird: Has the HIV epidemic impacted the way Black MSM access medical care? 

 

Earl: “It depends on where you live. Black gay men have limited access to medical care; rural healthcare is going away. 

 

We have a generation coming up that has no knowledge of the pain, the intense suffering caused by HIV or the education they need to prevent it. And of course, COVID has knocked HIV/AIDS off the front page. People’s attention span is short.”

 

Mockingbird: “How should we be thinking about the future of HIV treatment?”

 

Earl: “HIV is a preventable disease; there’s no reason why anyone should be contracting it. 

 

People need to feel affirmed, and deal with their mental health, housing, access to care, and other survival issues. 

 

Pharma companies have the bandwidth and the money to support those issues.” 

 

Mockingbird: Give me your immediate reactions to the following….”

 

HIV Vaccine.”

 

Earl: “We should’ve had one by now.”

 

Mockingbird: “Give the public health/science and research community a grade–A through F; how have we dealt with HIV/AIDS in the past 40 years?”

 

Earl: “C-. Until the entire world is safe, the risk is still there.”

 

Mockingbird: After 40 years–your reaction to the word, ‘cure’.”

 

Earl: “It’s possible, and I hope to see it in my lifetime.”

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