HIV, Drug Usage and Queerness: Finding Happiness through Stigma

This piece is the first in a series produced by Queer Kentucky that covers the intersectionality of queer identity, HIV status and drug/alcohol dependency in the city of Louisville. Other pieces will cover the rest of the state. Local luminary Amirage Saling was interviewed as part of the research for this piece, and in keeping with journalistic standards, any quotes attributed to her within will still be imbued with the present tense despite her recent passing. We dedicate this piece and subsequent stories in the series to her memory and the indelible lifetime of work she has given our community.

We would also like to thank Community Foundation of Louisville for funding this series of stories.

If there’s anything that unites queer people, it’s the feeling of otherness. More than a prosaic feeling of being different, it is usually something that a queer person learns about themselves early on. It is something they may try to hide, even from themselves, as it is also usually something that other people can perceive easily. It paints a target, and in trying to cover it, a queer person often plants a deep seed of shame.

Throughout history, queer people have combated that shame in different ways. Sex was one answer, the ultimate political statement when sodomy and other sex acts deemed immoral were literally illegal. Another was gay bars, fun and fellowship thrown into a pot and seasoned with the social lubricants of drugs and alcohol.

These tactics worked for a long time, and to be fair, they still do. So many queer establishments have helped forge fierce relationships and friendships that can weather any storm. Owning one’s sexuality is still a powerful statement that can be a steady challenge to the likes of heteronormativity. 

That is why the appearance of HIV in the 80s was such a blow. It’s almost as if the coping mechanisms that queer people had built over the years had been turned against them. The proliferation of drugs – particularly those requiring injection – as well as sex devastated the queer community during a time when they were especially vulnerable, when virtually no one knew anything about the disease and no one in any position of power cared to learn more or stop it.

There has since been a generation or two born after this time who know little to nothing firsthand about the AIDS epidemic. Many of the survivors of that era are traumatized and are averse to talk about it. Generally, millennials feel a sort of social pressure to ignore it, to be better than that fear from yesterday. And for better or worse, it sometimes feels like Gen Z knows nothing about it at all. After all, maybe that last generational feat is a worthy goal, but in the blind pursuit of that goal, are queer people doomed to repeat their own painful history?

What this all adds up to is ignorance and the longevity of outdated information. HIV is still something that affects queer people disproportionately. Without the proper measures, it is still something that can be passed through unprotected sex as well as transmitted through unsafe drug use. This is not meant to be a cause for panic. Things have changed since the 80s. There are currently one-pill-a-day treatments for HIV that people in the 80s couldn’t have foreseen in their wildest dreams, making it possible to have unprotected sex without transmission and for HIV+ individuals to live full lives. There are preventative treatments such as PrEP that stop a possible infection in its tracks. Why then, is HIV still an issue for queer people? Do drugs play a role? If so, what is it? What happens when all of these problems are compounded with race and socio-economic instability?

To answer these questions, Queer Kentucky turned to experts at various institutions equipped with HIV resources in Louisville.

Ashley Gaither – VOA FIT

VOA FIT is a specific program that is part of the Volunteers of America Mid-States organization, and in Louisville, it is where many people first learn of their HIV status. Indeed, their mobile testing facilities are fairly common fixtures at some gay bars and Pride events. Ashley Gaither is one of their HIV prevention specialists.

“I do education,” offers Gaither when asked what her day-to-day looks like. “I actually also do education on the radio on WLOU/WLOV on Mondays. We talk about PrEP. We talk about our locations and testing sites. The signs, the symptoms. How the quality of life has changed.”

Gaither goes on to explain that throughout the rest of her week, it’s about more education. It’s about testing and counseling. It’s about giving away free safe sex supplies. “We’re trying to prevent HIV in as many ways as we can, especially in the more predominantly Black areas like Newburg, the West End areas, in those communities that lack HIV education and those low-income communities.”

Gaither, who is Black herself, said that there is a correlation between lack of education and HIV. “We see it a lot. Predominantly in Black families… they don’t want to talk about it, and I think that’s where the trouble comes in,” she says. That trouble, or stigma, is something that Gaither said can fuel depression and play a serious role in how a person copes. Some turn to drugs. “I’ve seen one or two cases [personally], and that’s where their HIV was transmitted from.”

After informing someone of their status, VOA FIT gives these new cases all their options, but the first step is always getting them into care, specifically the Kentucky HIV/AIDS Care Coordinator Program that acts out of the 550 Clinic at U of L Hospital in Louisville.

Amirage Saling – Kentucky HIV/AIDS Care Coordinator Program

The mission of the Kentucky HIV/AIDS Care Coordinator Program is to provide quality care and services to HIV-infected individuals and their families throughout the state. In fact, the U of L 550 Clinic is one of seven regional sites, and Amirage Saling is a medical case manager – someone responsible for administering that care and availing cases to doctors, medicine and other resources.

As previously mentioned, connecting a new case with proper medical care is the first priority, and Saling says that if a new case does arrive with a drug dependency, there’s not much that can be done unless they want help. “When they do come, we talk about that because we do a full psycho-social assessment with the client. We can say to them, ‘If you decide to quit or want to quit, we can provide resources.’ But it’s up to the client if they decide if they want to or not. That is kind of the dilemma there,” she says.

When asked about why Saling, who is trans, feels that the individual cases she’s seen turned to drugs, she shares:

In her work as a case manager, Saling has seen that most of her clients with drug dependencies received their HIV+ status through the use of methamphetamine and/or unprotected sex, and it has been her experience that if left untreated, these dependencies cause her clients to fall out of care more than often than not. “It’s a way to mask the reality of being HIV+. It’s a way to get caught up in the drug and forget your appointments and life,” she explains. This opinion, as it turns out, is shared by many in Saling’s line of work.

Reverend Paul A. “Bo” Stilwell – Keeping It Real

At Keeping It Real Loving Caring Sharing in the Neighborhood Institute Inc. – or Keeping It Real for short – they are all about helping the community in any way they can. According to their website:

“Keeping It Real Loving Caring Sharing in the Neighborhood Institute, Inc. is dedicated to the total operation against poverty in the areas of health, housing and social pride in Louisville/Jefferson County Metro. Keeping It Real has evolved from a single-purpose agency, focusing on health to a multi-faceted agency with a focus on health, housing and social pride to improve the lives of low/moderate income families and individuals confronting poverty in urban settings.”

Part of that mission is similar to that of the KHCCP – in fact, the HIV+ cases Keeping It Real does receive are referred to the care coordinator program for medical case management. Consequently, Stilwell has met some instances of his own where clients’ addictions got in the way of their respective treatments.

“It’s very difficult for individuals who are challenged with HIV, I’m finding, dealing with homelessness often, and then dealing with a drug issue,” says Stilwell. “There are some that we’ve gotten them housing, we’ve gotten them some food, security. In that sense, they are less likely to be caught up in drug addiction. There are some people that absolutely have addictive behaviors. They’re not consistent with their medications. They’re on the street – sometimes these medications have to be refrigerated. Those are the dynamics that keep them away from doing their meds, and in the meantime, they’re falling back on their health.”

For Stilwell, the intricacy of the relationships between HIV status, drug addiction, socioeconomic stability and queerness can be overwhelming, and it all comes down to stigma. “Imagine that you’re stigmatized and you don’t want anyone to know that you’re even gay. Then you’re dealing with men, but you’re on drugs. And then in addition to dealing with drugs, you’re not disclosing. You’re not telling people that you’re HIV+. We’re still seeing that going on, and we’re fighting it as much as we can.”

Stilwell says that this fear of disclosure is a result of more than fear of rejection, that for men in his community, it is often a very real fear of being identified and literally physically attacked. “They mentally go into a shell. And LGBTQ people, or anyone else really, can enter into a place of drugs.” 

Stilwell finds that LGBTQ+ individuals in these situations who do find a romantic partner who is comfortable with their status tend to put up with toxic and abusive behaviors out of fear of losing a relationship they feel they may not be able to find elsewhere and/or to keep from having to deal with the reality of their status alone. Furthermore, Stilwell says this type of relationship can cause their drug dependency in the first place.

“That’s how they get into it. If the person they’re with is comfortable with them being HIV+, that also draws it in. They’re looking for comfort and acceptance… Often times, they become interconnected with someone who has a serious drug problem in a way that they can no longer function,” he explains.

Jennifer Twyman – Louisville Metro Public Health and Wellness

When it comes to functioning while addicted, some users are not ready to make a change. Whatever their reasons, the Louisville Syringe Exchange Program, a facet of Louisville Metro Public Health and Wellness is dedicated to meeting these people where they are. Jennifer Twyman is a health education specialist for the program.

“People are going to use drugs. They are,” says Twyman, “They’re only going to advance, so if people are going to use drugs, we should keep people as safe and healthy as possible because that keeps the community safe and healthy. That’s how things work.” 

At the syringe exchange program, the main goals are HIV prevention, Hepatitis C prevention and testing. As of the beginning of the pandemic, the exchange program currently offers five mobile sites Tuesday through Saturday for approximately three hours a day where individuals can no-questions-asked and without identification of any kind exchange their used syringes for new ones.

“We really are about treating people like people,” says Twyman, “Most of the time people who use drugs are not treated like people.” In Twyman’s opinion, one that is backed by the likes of VOA FIT and KHCCP, if a person is so deep in the thrall of their addiction that they are not ready to fight it, the best thing to be done is to attempt to make those behaviors safer. “If I can meet them there and try and keep them safe and give them the means to do that and they want help or they want to change something [later] or have questions, then they are more likely to come to me because they know they are going to be treated differently than if they go to the hospital and ask. Most of the time in the hospital they are treated very badly.”

Combating stigma and unfortunate circumstance are part of Twyman’s personal manifesto. Her work out in the community and steadfast resistance to the dehumanization of drug addicts has shaped her opinions in other ways, connecting her work with that of Bo Stilwell and Keeping It Real: “To make a real difference, everybody needs to be housed… The more that [the police] is geared toward support and services instead of punishment and stigma, the better we will be. Putting people in jail is accomplishing nothing but costing more money and keeping a cycle going. If you give people a way to give back, they will.”

Anonymous – The Healing Place

Despite all the advancements made regarding HIV, many HIV+ individuals still choose not to disclose their status. The reasons are as myriad as the individuals themselves, but they all stem from the stigma mentioned by each of the experts Queer Kentucky spoke with. It is important to note, however, that similar to being out of the closet, disclosing one’s status is a deeply personal decision, one that should only be made when that person is ready. In fact, peace, fulfillment and acceptance regarding one’s HIV status can even be achieved when someone chooses not to disclose publicly at all.

To help illustrate this fact, Queer Kentucky has spoken with someone who has chosen to remain anonymous and who will be referred to from now on as Anon. Anon is white, gay and identifies as cis male. He is HIV+ and has abused/has addictions to Neurontin, cocaine, alcohol, methamphetamine and Adderall. He has gone through the The Healing Place, a Louisville-based facility for assisting any person who wishes to enter the program with overcoming their addiction(s).

“Before getting sober, my life was sad. And what I mean by sad is that I could see my entire life going on around me, but I absolutely could not feel a thing,” he says. Anon talks about the emotions he felt at the time as being “bought one plastic baggy at a time.”

“It had me. My addiction had me… Sordid places. Sordid people. Bath houses. I would call them trap houses. Houses that were just drug dens. Staying up for days on end. The longest I ever stayed up was 11 days. I was so paranoid that I packed everything in my car and drove around Louisville looking for a place to go only to end up exactly where I started and not knowing what happened,” Anon recounts.

Anon recalls that he was all about a put-together exterior in those days to mask what was going on inside. He admits that he even tried to enter other programs in limited ways. Going to meetings but not participating in other facets of a given program or lying to himself that he could still drink alcohol despite other behaviors that were still wildly out of control. Finally, due to an overdose, it led Anon to the hospital. “That was the stopping point,” Anon admits.

“I had heard of The Healing Place, but I didn’t think that The Healing Place was for me. I thought it was for these homeless guys who didn’t have anywhere else to go, and I wasn’t that bad,” Anon relates with chagrin. 

Anon remembers those first days at The Healing Place as being truly eye-opening and that being with others whose addictions intimidated even him afforded some much needed perspective. Being at The Healing Place introduced Anon to support groups that began a routine of his checking in with them weekly, monthly and even annually. While Anon was made aware of his HIV status before he went to The Healing Place, he attributes coming to terms with it to these support group meetings.

“They put me in touch with all the pharmacies for my medicine. I got a care coordinator. All of my meds were shipped to The Healing Place, and I never missed a dose,” says Anon. Now, Anon’s viral load and white blood cell count – both important numbers when managing HIV – are within the normal range, even “better than they should be” according to Anon.

Since completing the program, Anon has chosen to give back to The Healing Place and work there. He’s not alone: “A lot of the people who work there are sober and have their own programs. I think that they work there for the same reason that I do. There’s a camaraderie and fellowship. It’s a family atmosphere. I can take pride in my job because it makes me feel that the next person who comes in there can know that there’s hope.”

Far removed from the fever dream days at the height of his addiction, Anon has since tried to make sense of why he turned to drugs and alcohol in the first place. “I feel that our people are dealing with a devastating weakness which is low self esteem,” he opines. “We don’t have a place that we fit. We have trauma. We have all kinds of questions that we haven’t found answers to, and the only thing we’ve found solace in is comforting ourselves with illegal drugs and alcohol.”

The stereotypes surrounding a positive HIV status, of being “dirty,” persist, and perhaps the only way to beat them is to overcome this weakness of low self-esteem, to get out in the community and have more discussions, to overcome the void placed in queer people by an unnecessary and antiquated shame, a void often placed by queer people themselves.

When asked how Anon feels after finally attaining his sobriety, he says, “Have I found happiness? That was my goal. First, it was unity. Then it was happiness. After my recovery, I found happiness. It’s a feeling unlike anything else.” Happiness certainly is something that looks different for different people and doesn’t necessarily have to involve the same journey that Anon took to reach it, but however it’s done, perhaps finding happiness from the stigma is the way to outrun the issues of our past and embrace our future.

If you’d like to be part of the next stories in this series, please contact Queer Kentucky at [email protected].

If you or a loved one would like more information on the resources mentioned in this piece, please refer to the list below:

VOA FIT: https://www.voamid.org/voafit

KHCCP: https://chfs.ky.gov/agencies/dph/dehp/hab/Pages/services.aspx

Keeping It Real: https://keepitrealcovid.org/

Louisville Syringe Exchange: https://louisvilleky.gov/government/health-wellness/syringe-exchange-program

The Healing Place: https://www.thehealingplace.org/’