Episode 9: HIV/AIDS & Healthcare Discrimination

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Doug          Teo-Drake1

Transcript

Phil: Hey, this is Phil aka Corinne 

Alex: And I’m Alex Berg. And you’re listening to… 

Phil: The I’m From Driftwood Podcast.

Teo: My name is Teo Drake. I actually grew up in Connecticut, near New Haven. 

Doug: I’m Doug Rice. I’m from Rochester, New York. 

Teo: The story basically is sort of this intersection or this… this way of looking at my struggle around gender identity and the way in which that level of sort of struggle and shame impacted by risk for HIV and my ultimate testing to be positive.

Doug:  Robert and I met in 1983 at a record store I was working at. He came in as a customer. I had just gone to a Talking Heads concert ‘cause I was really into them and he was at the same concert, but we didn’t know it, but. He saw my tee shirt so we started talking. 

Phil: On today’s show, we’ll listen to Teo and Doug whose lives have forever been impacted by HIV and AIDS. 

Teo: And I had kind of found my place in this butch dyke world because, you know, I looked at myself and looked at them and they looked at me and we all looked alike. So they were like, well, you’re just a butch dyke. You know, and I was like, okay, you know, ‘cause that’s… I didn’t know anything else.

And so around age 28, I had gotten involved with a woman that was struggling herself. And I had gotten into a relationship that was physically violent. 

Doug: And, you know, we started seeing each other and moved in fairly quickly. After about a year in Rochester, I was… I was young. I was 22 maybe and just wanted to get – start my career in sound engineering. I was mixing sound for bands and things. I wanted to come to New York and learn how to do it, really. And so I did, and then Robert moved down also. We moved to Williamsburg because I could still run fast and you had to run fast back in those days. And life was good. 

Teo: Like most abusers, they are able to figure out what exactly is your point of pain. And my gender was… was the thing that you could go after to shatter my core. And that’s one of the things she did. And this is where here was this woman who was HIV positive and, you know, it just didn’t occur to me that I could say no, it didn’t occur to me that I could ask her protection, it didn’t occur to me that there were certain things I could not do.

Doug: It was a rough time for a lot of people in our community. And by the late eighties, Robert had contracted HIV. And this was kind of, you know, this was before… I think the only thing around was whatever that first horrible treatment was. 

So periodically we’d end up at the emergency room. We go to St. Vincent’s right in the middle of – right by Christopher street there. Probably the gay friendliest hospital around. Oo to the emergency room, go in and see the triage doctor. I’m sitting with Robert. At that point, he had AIDS dementia complex, which is kind of like Alzheimer’s. I don’t think it happens much anymore with the medicines that are around, but was part of the natural progression for a number of patients, back in the day. 

Teo: I ended up having these symptoms all of a sudden in 1995, where I had all these childhood diseases. I had hand foot and mouth disease. I had strep throat. I had all of these things. I can’t remember them at this point, but they happened all within 30 days or so of each other, you know? And I’m like, you know, and I knew. I was smart enough to know what the symptoms of sero-conversion were. 

And so I went to the public health department and said, you know, like I need to get tested. And they were like, you know, it doesn’t happen. Like, you’re not at risk. You know, you’re not one of those people that are at risk. And I went home and I went back, you know, and I’m like, This isn’t okay. And finally, I refuse to leave until I got tested. Someone’s drawing my blood today and it’s going to be you, or it’s going to be me, but I need, I need to be tested.

And I got tested, you know, they drew my blood. And so I came back in another week and I got…  I got called into an office and I knew, I knew that there was something that just didn’t feel right. And in front of me was this doctor that I had never met. It wasn’t the nurse that had done the intake and drawn my blood before. And she never looked at me. 

She looked at the paperwork and said, “Your test came back positive. You must – what you told us couldn’t have been true.”

Doug: If anyone… if you’ve ever cared for an Alzheimer’s patient, it’s a little bit of a ride. In any case, so we’re down for, I don’t know what the emergency was, but we were at the emergency room for whatever was happening that weekend. Went into the triage with the doctor and the doctor is interviewing Robert. You know, Do you have a history of this? Do you have a history of that? This? And you know, Robert had dementia and he was… I don’t know  if he was making things up, but he wasn’t accurately representing his history in a way that could hurt him. And of course I’m a lover. I really want him to be treated properly. 

So I start correcting him to the doctor and the doctor looks at me and goes, “Who are you?” 

And I’m like, “Well, his boyfriend.” 

And he’s like, “Well, are you related by blood?” 

I was like, “No.”

He’s like, “Then you have to leave.” And he called security, had me escorted out, continued to interview Robert and treat him based on his dementia-enhanced history. 

That wasn’t that uncommon. You know, there was some times I’d spend the night in the hospital and sleep next to Robert in his bed. And other nights at eight o’clock, the nurse would come in and say, “Get the hell out of here. Who are you?” You know, depending on the compassion of the nurse. And that’s what happens when you leave decisions like that up to the whim of whoever’s working that night. 

Teo: And I remember thinking like, it was like… it was like almost sudden she was at like a football field away. You know, and I couldn’t even hear, you know, what she was saying? And I left. I left without resources. I left without a connection to a doctor. I just, I left, you know, not on my own accord. I mean, they just kind of sent me out the door. 

So I went home and I didn’t tell anyone. I didn’t tell my closest friends. I didn’t call my parents. Had I been diagnosed with cancer, I would have called. There wouldn’t have been this thing that I had done something wrong.

And I didn’t tell anyone for a while. And I didn’t see a doctor. I didn’t do anything. I rapidly went from being HIV positive to an AIDS diagnosis and 33 T cells. My viral load off the charts. It was unmeasurable. And I couldn’t tolerate the medication and I had no will to tolerate the medication. You know, I think tolerating side effects means that you have to want to tolerate the side effects. And then I just couldn’t imagine myself as an old woman. So why would I bother? 

It was quickly getting ready to die – I thought that that was what was going to happen. And I just think I got angry enough that I was like, I’ll be damned if I’m going to die this way. And I’ll be damned if I’m going to get buried a girl.

And you know, and so I chose to be here in the process of… of gender transition. I had a great therapist who kind of kept reminding me that that was on the table, even when I ran from it. And in 2002, I started testosterone. And as I started to transition and testosterone took its effect and I started to look like myself and the world started to not be so difficult for me to navigate, there became these places of ease. And in those places of ease, there became a lot of sadness and a lot of poignancy. You know, there was joy and at the same time I was fully aware of everything I had lost.

Phil: You see two sort of examples of people that have gone to medical professionals and have been let down in some ways. I mean, Teo was let down by, first of all, going to the public health department to ask for testing, knowing something was wrong. I mean, someone knows their body knows, knowing something was wrong and they turned him away and then he had to come back and demand a test. It was, like, ridiculous. 

Also with, with Doug and Robert, you know, you see a situation where the doctor’s judgment of their relationship took precedence over providing care. It’s like, what is this? 

You know, I’ve had situations myself where I’ve gone to the doctor with my now ex-wife. She had some medical conditions and I remember walking into the doctor’s office and, you know, I was like, I want to be in the room with you. Let’s go in. And there was this one woman who started doing the intake, who was just not into me. She was just like not having any of me. 

And my thing is like, I don’t care how you feel about me. Like, you put your focus on my wife right now and make sure she’s getting what she needs. And it’s just like this situation of like now I… now, so I’m walking out of this room. Is she going to be, like, making sure that she gives the care she needs to my partner and not be, you know, having some sort of issue with the fact that she knows we’re partners. It’s just ridiculous. It’s like we shouldn’t have to leave it up to chance like this at all. 

Alex: Absolutely not. And it also made me think about one of the reasons why I wanted to get married was not because I wanted to have, like, a big, nice ceremony and have this romantic gesture. But also because you want to just be able to ensure that you have that legal piece, that access to someone. This is kind of one of the ways that we seen these issues in our daily lives. Have there been other people that you’ve seen who have impacted your point of view on this that you’ve learned from anybody in the media or even like pop culture representations? 

Phil: I often think of Magic Johnson. And quite often when I think about HIV, I remember when Magic Johnson came out because it was this whole thing of like, okay, so here’s this Black heterosexual man who has HIV and I’m not even sure what the circumstances are around with how he caught HIV or how that happened, but it was such a different view of someone experiencing it from what I was used to hearing. Because at the time I was so used to hearing gay a gay man having HIV or gay men contracting HIV. And now there was this like super mega, like, heterosexual man who is a basketball star, who’s well known. Yeah. It was so interesting when he caught it because I just… I felt like people then had to have a different conversation around it. So, you know, with Magic Johnson, it was really different because it was just so… it was something we hadn’t seen before. 

Alex: Yeah, absolutely. And it just also makes me think that, like, I feel like a lot of the coverage that I remember for Magic Johnson is that this was the thing that then led about him for a really long time. Like, one of the things we talked about earlier was people being able to be their whole person and having, you know, because of, like, the stigma around this and the media, having this be like the thing that… that was really focused on. 

One thing that that made me think about is some of the early representations of HIV and AIDS that I saw in the media growing up. Like I remember, as a child of the nineties, seeing – 

Phil: You’re dating yourself now.  

Alex: Little bit, little bit. One of the first ways that I was introduced to it was through the movie Philadelphia with Tom Hanks. Did you ever see this movie? Also through the musical Rent? I can remember being, like, 11 years old and all of my classmates, like, singing the Rent soundtrack, having clearly no idea what it had to do with.

But I… but I almost remember there being like this genre of representation of HIV/AIDS that was very much focused on the trauma and pain and suffering of it all. And just how I feel like, so fortunate to live in a time when now there are more stories and representations and people out there talking about their experiences, and that we have evolved from that very one dimensional portrayal to something much more.

Phil: So true. So true. So, you know, I’d like to share a personal story. I had a friend in the eighties, as I was in high school – and now I’ve dated  myself, so great – that died of AIDS. He was a friend of mine. He was a classmate of mine and we were pretty good friends. And I remember going to the hospital and seeing him. I remember, you know, a bunch of us going and going to the hospital, just really watching him waste away.

It was really -it was just so bizarre to see someone, my age to be experiencing this level of pain and just losing their life. And I just, I remember thinking to myself, like, I just, this is so bizarre. Like, I don’t understand this. And you know, I think back and I don’t think I was equipped at the time to really let it sink in what it was, but, you know, to have gone through the experience with him and to be with him even in the last days, it was really something that I’ll never forget. 

I wonder also like what his life would have been like, you know, at this point, like we’re talking about the earlier days of AIDS and HIV. And so there weren’t the treatments that exist. You know, he could have lived a much longer life, but it was, was at that time, just a death sentence and you were just waiting for someone to die. And it was just a matter of, like, holding space and being there with that person and holding their hand and being, you know, letting them know as they’re slipping away that you’re in – you’re in it with them. You know, for as long as you can be, 

Alex: Thank you for sharing. And that sounds like such an emotionally difficult experience to have to navigate.

One of the things that you kinda got into is like the evolution of things have changed from the 1980s until now. I mean, talk to me a little bit more about some of the ways that you’ve seen it evolve. Like, we’re in New York city. We are also living in the LGBTQ+ community. One thing I wonder is how do you think that other people are thinking about this?

I think one thing that I’ve learned in terms of my response to people who talk about living with HIV, or when I talk to friends who are on PrEP, like not to project my own stuff on them, not to have an overly emotional reaction, that kind of thing, like, I feel like that’s a big thing that I’ve learned. 

Phil: I’ll say that within our community, I feel like there’s still so much addressing it in a head on way that I don’t seem to see outside of our community. So when you think about HIV and AIDS, it’s really, you know, initially it was called like gay men’s cancer. The truth of the matter is there is a huge population of people in who are not gay, who have HIV.

There there’s HIV in many parts of the world that have nothing to do with people who are queer, gay, or identify as anything under our umbrella. I think that sometimes it’s like that just gets forgotten. It just seems like that just, I mean, where is the discussion about that? Where’re discussions about, you know, heterosexual people who are HIV positive? I don’t see much of that. I mean, I know it exists, but it’s still seems so hidden. And I think within our community, it gets addressed quite a bit. Yeah, and we… we see it, but I don’t… I don’t know about it outside. And there’s so much more to this disease than it just being something that’s under our umbrella.

Alex: I feel like it’s one of those things where if you are in a population or community that is not directly impacted by it, it is easy for you to silo yourself off and not have to engage with this particular issue and how it impacts people. Or if you don’t know people who are personally impacted, it’s easy for you to turn the other way and not engage with it at all.

Phil: In Teo’s video, he mentioned this the “and” a lot of times, and I’ve really also loved that phrase… sort of the “and,” which is the living with – with having this diagnosis, knowing that it’s something that can take his life, but also this whole idea of like this identity that fits him, that makes him feel like himself.

I feel like it’s such a larger sort of lesson in general. Like, it’s sometimes we can tend to get into these modes where it’s like at that moment, it’s – sometimes it’s… it could seem like that’s all you are. There’s so much more to who you are. So I love this idea of talking about the “and” – the being able to exist with these complex sort of emotions, all in one place, as one person and realizing all of it can exist at the same time. 

Alex: It actually made me think about a story that I covered last year about this guy named Nick Harrison, who is living with HIV. He’s actually – he’s in the military and he received an order to essentially ;eave the military because they instituted this policy that was being called “Deploy or get out,” which was anyone who was essentially living with HIV and non-deployable had to get out of the military in a certain amount of time. 

One of the big things that we discussed over the course of that story was how, because of the medication you can access today, how he had an undetectable viral load, and part of his fight to be able to stay in the military and do the work that he felt called to do was that having that undetectable viral load, medical experts said there was absolutely no reason why he should face that kind of discrimination.

And one thing that was really interesting to see in response to that story and to the conversation about being undetectable, and that means U=U, undetectable means it’s untransmissable. When I shared this story, so many people had no idea what undetectable meant and it felt like something that was being really discussed in spaces with gay men, where, you know, “undetectable” is a word that people understand what it means. And then it just really was eye opening to me that so few people outside of that seem to know what that means or that that even existed.

Phil: Wow. That is kind of blowing my mind 

Alex: That story and where this connects for me is again, to this point that HIV discrimination is very, very real. And I think, like, when I think of the direction that I would like to see all of this go in, in addition to changing the attitudes and stigma around it, but I think it would be really great if there were a larger recognition of HIV discrimination and actual protections for individuals so that you might not lose your job because you’re living with HIV. 

Phil: We’re still not there. You know, there’s still much work that has to be done in this regard, I think.

Alex: You know, also like access to PrEP, access to medication, access to the healthcare resources, access to healthcare providers who have been trained to have the competence to deal with these issues and deal with communities that are disproportionately impacted by HIV and AIDS.

Phil: Definitely. You know, one of the things that – you mentioned PrEP and I think that we should talk a little bit about PrEP, and I think one thing I definitely love about the idea of PrEP is that it does seem to, like, I won’t say it erases, but it actually sort of destabilizes sort of the barrier that has been placed around, you know, sort of the buckets, the sand boxes that… that people get placed in, if you’re in one or the other. And I feel like the idea of having something like PrEP sort of like destabilizes that a little bit and it doesn’t remove it, but it does make it so that there’s less of this “othering’ of people who are HIV+.

Alex: One thing definitely that I’ve noticed is that because I have friends who are on PrEP, it means that actually I am having way more conversations about HIV with them than I feel like maybe I would be having otherwise. Or I definitely, I feel like, yeah, in spaces where I’m with queer women, like a lot of times I don’t hear as many conversations happening around HIV in particular. And then for the gay men that I’m friends with who are on prep or other individuals who are on PrEP, like I feel like it just somehow normalizes the conversations that were happening. ‘Cause they’re just, we’re just, like, talking about PrEP and how they’re on it. Or, you know, they mentioned that they had an appointment to take some test or something like that.

Doug: I think the takeaway here isn’t that this has changed. I mean, the world has changed. Some areas have changed. But I can guarantee you any place that allows choices by individuals that aren’t following some sort of protocol like Kim Davis, there’s a lot of situations where individuals wield a lot of power. And if those individuals are willing to abuse their power for whatever the reason, it can seriously impact your health. You know, when you’re alone in a room with a doctor or a nurse practitioner, if that nurse practitioner doesn’t like something about you and also doesn’t take her medical license seriously enough to actually treat you rather than judge you. I’m sure that happens every day, all over America. Still happening in New York. I bet. But less, or at least less for gays. I’ll guarantee it’s happening a lot to someone. 

Teo: And I was able to, I think, figure some way to live with that both “and” you know? In the same way that my… my experience of living with AIDS has been that I get to figure out how to have a future and understand that I may not live to see it. Like, I’m not one of those people living with HIV who’s like, I’m gonna be fine. Like, I’m gonna… I’m going to survive this. And I’m not one of those people living with HIV who’s lived with this. It’s hope- it’s hopeless. It’s useless.

Like, I have figured out some spiritual way to live with both “and”, that the two competing things can be true at the same time. And that was true, I think, with… wigh my gender experience of sort of walking out the door and being like Now, finally I get it to be me. 

Phil: You know, when we were talking about PrEP, I’m talking about also like some of the medications right now that can lower someone’s viral load to a point where it is undetectable. And while all of that is good, I think that the scary thing about it is that because there are things like PrEP and PeP and things like that, and also some of the treatments for people who are positive, there’s always this concern and that now people are going to get a little more lax in terms of being, you know, sexually safe.

I feel like that’s the one thing that is worrisome because it’s like, just because we have some of these things and we’ve come so far doesn’t mean that sexual safety is not a thing and that’s not something we have to be concerned about. So there is this concern that because now we have PrEP or we have ways of treating people that can really, really control the viral load, that people are not going to be as safe.

Alex: So there are two people in particular, who I want to mention who is a journalist. I just learned a lot from their work. Robert Levithan. He passed away a couple of years ago of cancer. He had AIDS as well, and he founded a group called The HEaling Cirle and had done a lot of work with Gay Men’s Health Crisis in the 1980s. In addition to being such a lovely person who really left an impact on me and taught me how to be more compassionate and also put aside my presumptions and projections. 

And then somebody else who I highly recommend following on social media is Alexandra Billings. You may recognize her from Transparent, but she does a lot of Instagram videos talking about what it’s been like for her living with AIDS for decades. 

And I was just going to say, I would be absolutely remiss not to mention Larry Kramer, an activist and playwright who recently passed away, who was incredibly vocal about this issue, who was one of the founders of the group Act Up and also Gay Men’s Health Crisis. And he is a voice that has incited a lot of opinions within this space. But I think, especially in terms of this moment, just thinking about him, reminds me that rage and anger and putting aside the need to be liked and come off cause respectable, how those are so central to this fight and to all the kinds of issues and work that we care about.

Phil: The I’m From Driftwood Podcast is hosted by Phil aka Corinne… 

Alex: And Alex Berg, and is produced by Anddy Egan-Thorpe. 

Phil: The Podcast is recorded as part of I’m From Driftwood, a worldwide nonprofit, LGBTQIA+ story archive and is funded in part from the TD Bank and Heritage of Pride New York.

Alex:  I’m From Driftwood was created by Nathan Manske to help queer and trans people learn more about their community, help straight people learn more about their neighbors and help everyone learn more about themselves all through the power of storytelling. The IFD program director is Damien Mittlefehldt. The stories you’ve heard today are available in their entirety plus thousands more at ImFromDriftwood.org.

Phil: Please follow us on Instagram, Facebook, and YouTube. And our score is provided by Evelate Audio. Be sure to subscribe to our podcast wherever you get your podcasts.

Alex: Thanks y’all for listening.

 

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