Assistance programs for people who are living with HIV can operate in strange ways. For instance, sometimes they come through without any problems, whereas other times they can send people in need on months-long spirals of despair.
I received the latter treatment in 2015 while trying to access assistance from AIDS Drug Assistance Program (ADAP) in order to pay for my $3,000-a-month antiretroviral medication. But when I lost my job while undergoing cancer treatment in 2017, I received assistance from New York City’s HIV/AIDS Services Administration (HASA) without any problems.
My HASA benefits gave me an upgrade in insurance, paid for half of my rent, and provided me with SNAP (food stamp) benefits even after I told my case manager that I’d found a new job and no longer needed them. He told me to continue accepting the benefits so that I could build up a safety net in case I needed it in the future.
What was strange about this is that HASA benefits are notoriously difficult to receive, and yet mine went into effect two weeks after I applied for them. Meanwhile, my ADAP benefits took three months of failed requests before one of GMHC’s top advocates, Angel Soto, secured them for me.
Despite these uneven processing experiences, I was always provided impeccably courteous customer service while speaking with administrators, particularly during my pursuit of HASA benefits.
That same treatment was not extended to my fellow petitioners, many of whom showed high levels of distress and poverty such as poorly bandaged limbs, soiled clothing, and possession of all of their worldly belongings in broken suitcases and trash bags.
Despite their less than ideal circumstances, I often overheard these people being addressed with open hostility. I surmised that one reason why was that I often overheard these people respond to straightforward questions with suspicion, outrage at the invasiveness “into their business,” or outright stonewalling.
It was clear that they did not trust the people who had been tasked with providing assistance, and these administrators repaid the distrust with abuse.
When I spoke with Donja R. Love, the Afro-Queer, HIV-positive playwright, about our common experiences with medical care, he shared that receiving abusive treatment from administrators pushed him out of care for two years. In a follow-up interview, he spoke about service providers needing to check their humanity when speaking to people who are living with HIV if they want to ensure adherence and linkage to care.
Donja R. Love: Organizations run by people of color in numerous industries get less than 1% of funding. That is by design of white supremacy. But what frustrates me is that when we speak on this and call it out, we’re told, “There you go again being so aggressive.” Or, “Why don’t you say it in a nice way so that people will listen to you?”
Juan Michael Porter II: Tone policing or crying over how something was said instead of listening to what was just said.
Porter II: What bugs me is—because I present in a way that is palpable and elegant to most white people—I am treated very nicely and have been told on way too many occasions that, “If other Black people were more like you, they’d have it better too.” But it leaves me thinking, should we be focusing on one’s presentation when one is in need?
Love: Right. Why does someone have to be this prolific person or positioned in a certain way to be listened to? And I just also want to point out that this is not isolated to white people. It’s not just white individuals who uphold white supremacy and respectability politics. There are Black people and people of color out there who uphold white supremacy as well.
I’ve been in predicaments where people who look just like me uphold this idea of how one is supposed to act, speak, or dress if they want to get ahead. I wouldn’t be surprised if some of these people that you were talking about during your experience with HASA, who were dealing with individuals in such a negative way, were folks of color or flat-out Black people as well.
Porter II: You’re right. In that instance, they were Black.
Love: A lot of work that we need to do is about unpacking white supremacy and how it corrodes every single person. Because, why should someone have to exist in a certain way to matter?
Porter II: What ends up happening is people are forced to contort themselves into all sorts of shapes just to get help.
Love: And how exhausting is that? What ends up happening is you don’t want to go and get help anymore because you’re literally too tired and beat down.
You don’t want to hear, “You aren’t good enough,” anymore. Right? And that’s essentially what’s being said: “You aren’t good enough. The way you show up in the world does not matter.” Somebody can only hear that so many times before they lose themselves, but that is a part of the system that is designed to block individuals from progressing and surviving.
We’re focused on survival, but we know that if we go to this place and deal with these individuals, we will become drained. And that is not conducive to our survival, so we will stop going there. When I was back home in North Philly, I stopped going to a clinic where my doctor was based for two years because every time I went there, I never felt like a human being.
I’m not talking about my HIV specialist or nutritionist; I’m speaking about the front-desk receptionists and some of the nurses. Every time I went there, I felt incredibly devalued. I felt as if I didn’t matter. I felt as if the individuals who were supposed to build me up, who were supposed to affirm me, only cared about a paycheck. They didn’t care about the lives of the folks who were there for help.
These are the things that we need to talk about, because what it did to me was—I stopped going to the doctor’s office for two years. So what that means is that for two years, I stopped taking medicine, and I knew the consequences. But I decided I would much rather feel like a human being than deal with those individuals.
Porter II: I am so angry to hear this happened to you. What’s most upsetting, besides the fact that this happens to people all the time, is the power imbalance. You went without meds and care for two years because of someone else’s lack of basic humanity. And at that time, I’m guessing you didn’t feel as if you had other options?
Porter II: I was almost in a similar situation as you with my pharmacy. In 2016, anytime I went to collect my medication, the person in charge of dispensing would sneer at me and we’d end up arguing. Luckily, I spoke to my advocate and we switched locations, but it had gotten to the point where I was actually thinking about skipping my medication because I didn’t want to deal with that guy again.
Love: That’s why we need to continue to challenge these nonprofit industrial complexes because they know that folks are scared to say anything, particularly people who are in need.
Porter II: And when you’re living with HIV, on a certain level, a part of you always feels vulnerable or as if you are in need.
Love: That’s why this idea that we don’t matter—that we are just property that individuals can make money off of—upsets me.
Porter II: And it’s a lot of money. 2019’s HIV/AIDS budget for the United States was 34.8 billion dollars, though only 900 million dollars of that went towards prevention. A sizable chunk of that, $21.5 billion dollars, went towards domestic care and treatment, but if AIDS service organizations and their staff are denying their patients basic human decency, then that money goes to waste.
According to Centers for Disease Control and Prevention’s report on seroconversions in this country, 80% of HIV transmissions are from persons who are not receiving regular care or who do not know they have the virus. If even 40% of those transmissions happened because people had fallen out of care because of this abusive behavior like what you experienced, imagine how many lives could be saved if basic human kindness was mandatory.
Love: It could change the world.