HIV/AIDS & Healthcare Discrimination [Podcast]

In this episode, Phil and Alex explore the discrimination in healthcare and the evolving conversation around HIV/AIDS and prevention.

August 17, 2020 by I’m From Driftwood Leave a Comment

 

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Before his transition, Teo was repeatedly dismissed by healthcare professionals when he realized he’d contracted HIV from an ex-girlfriend. Doug, meanwhile, was kicked out of a hospital room by a doctor because he wasn’t related by blood to his boyfriend, who was living with HIV at the time. Different people, different walks of live, but both shared a similar experience: culturally incompetent healthcare.

In this episode, Phil and Alex explore the discrimination in healthcare and the evolving conversation around HIV/AIDS and prevention.

 

Transcript provided by YouTube:

00:02

Hey, this is Phil aka Corinne And I’m Alex Berg. And you’re listening to…

00:14

The I’m From Driftwood Podcast. My name is Teo Drake. I actually grew up in

00:21

Connecticut, near New Haven. I’m Doug Rice. I’m from Rochester, New York.

00:25

The story basically is sort of this intersection or this… this way of looking at my struggle

00:30

around gender identity and the way in which that level of sort of struggle and shame impacted

00:35

by risk for HIV and my ultimate testing to be positive.

00:38

Robert and I met in 1983 at a record store I was working at. He came in as a customer.

00:43

I had just gone to a Talking Heads concert ‘cause I was really into them and he was

00:47

at the same concert, but we didn’t know it, but. He saw my tee shirt so we started talking.

00:51

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

00:56

HIV and AIDS. And I had kind of found my place in this butch

01:00

dyke world because, you know, I looked at myself and looked at them and they looked

01:05

at me and we all looked alike. So they were like, well, you’re just a butch dyke. You

01:10

know, and I was like, okay, you know, ‘cause that’s… I didn’t know anything else.

01:13

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

01:18

And I had gotten into a relationship that was physically violent.

01:20

And, you know, we started seeing each other and moved in fairly quickly. After about a

01:24

year in Rochester, I was… I was young. I was 22 maybe and just wanted to get – start

01:30

my career in sound engineering. I was mixing sound for bands and things. I wanted to come

01:33

to New York and learn how to do it, really. And so I did, and then Robert moved down also.

01:40

We moved to Williamsburg because I could still run fast and you had to run fast back in those

01:44

days. And life was good. Like most abusers, they are able to figure

01:48

out what exactly is your point of pain. And my gender was… was the thing that you could

01:55

go after to shatter my core. And that’s one of the things she did. And this is where here

01:58

was this woman who was HIV positive and, you know, it just didn’t occur to me that I could

02:03

say no, it didn’t occur to me that I could ask her protection, it didn’t occur to me

02:07

that there were certain things I could not do.

02:09

It was a rough time for a lot of people in our community. And by the late eighties, Robert

02:14

had contracted HIV. And this was kind of, you know, this was before… I think the only

02:19

thing around was whatever that first horrible treatment was.

02:23

So periodically we’d end up at the emergency room. We go to St. Vincent’s right in the

02:27

middle of – right by Christopher street there. Probably the gay friendliest hospital around.

02:32

Oo to the emergency room, go in and see the triage doctor. I’m sitting with Robert. At

02:38

that point, he had AIDS dementia complex, which is kind of like Alzheimer’s. I don’t

02:42

think it happens much anymore with the medicines that are around, but was part of the natural

02:46

progression for a number of patients, back in the day.

02:48

I ended up having these symptoms all of a sudden in 1995, where I had all these childhood

02:53

diseases. I had hand foot and mouth disease. I had strep throat. I had all of these things.

02:58

I can’t remember them at this point, but they happened all within 30 days or so of each

03:02

other, you know? And I’m like, you know, and I knew. I was smart enough to know what the

03:07

symptoms of sero-conversion were. And so I went to the public health department

03:11

and said, you know, like I need to get tested. And they were like, you know, it doesn’t happen.

03:18

Like, you’re not at risk. You know, you’re not one of those people that are at risk.

03:21

And I went home and I went back, you know, and I’m like, This isn’t okay. And finally,

03:27

I refuse to leave until I got tested. Someone’s drawing my blood today and it’s going to be

03:32

you, or it’s going to be me, but I need, I need to be tested.

03:36

And I got tested, you know, they drew my blood. And so I came back in another week and I got…

03:41

I got called into an office and I knew, I knew that there was something that just didn’t

03:46

feel right. And in front of me was this doctor that I had never met. It wasn’t the nurse

03:50

that had done the intake and drawn my blood before. And she never looked at me.

03:55

She looked at the paperwork and said, “Your test came back positive. You must – what you

03:58

told us couldn’t have been true.” If anyone… if you’ve ever cared for an Alzheimer’s

04:01

patient, it’s a little bit of a ride. In any case, so we’re down for, I don’t know what

04:07

the emergency was, but we were at the emergency room for whatever was happening that weekend.

04:12

Went into the triage with the doctor and the doctor is interviewing Robert. You know, Do

04:17

you have a history of this? Do you have a history of that? This? And you know, Robert

04:23

had dementia and he was… I don’t know if he was making things up, but he wasn’t accurately

04:28

representing his history in a way that could hurt him. And of course I’m a lover. I really

04:33

want him to be treated properly. So I start correcting him to the doctor and

04:38

the doctor looks at me and goes, “Who are you?”

04:40

And I’m like, “Well, his boyfriend.” And he’s like, “Well, are you related by

04:44

blood?” I was like, “No.”

04:46

He’s like, “Then you have to leave.” And he called security, had me escorted out, continued

04:51

to interview Robert and treat him based on his dementia-enhanced history.

05:00

That wasn’t that uncommon. You know, there was some times I’d spend the night in the

05:04

hospital and sleep next to Robert in his bed. And other nights at eight o’clock, the nurse

05:08

would come in and say, “Get the hell out of here. Who are you?” You know, depending

05:11

on the compassion of the nurse. And that’s what happens when you leave decisions like

05:18

that up to the whim of whoever’s working that night.

05:23

And I remember thinking like, it was like… it was like almost sudden she was at like

05:26

a football field away. You know, and I couldn’t even hear, you know, what she was saying?

05:31

And I left. I left without resources. I left without a connection to a doctor. I just,

05:34

I left, you know, not on my own accord. I mean, they just kind of sent me out the door.

05:38

So I went home and I didn’t tell anyone. I didn’t tell my closest friends. I didn’t call

05:41

my parents. Had I been diagnosed with cancer, I would have called. There wouldn’t have

05:46

been this thing that I had done something wrong.

05:48

And I didn’t tell anyone for a while. And I didn’t see a doctor. I didn’t do anything.

05:53

I rapidly went from being HIV positive to an AIDS diagnosis and 33 T cells. My viral

05:58

load off the charts. It was unmeasurable. And I couldn’t tolerate the medication and

06:03

I had no will to tolerate the medication. You know, I think tolerating side effects

06:08

means that you have to want to tolerate the side effects. And then I just couldn’t imagine

06:12

myself as an old woman. So why would I bother? It was quickly getting ready to die – I thought

06:16

that that was what was going to happen. And I just think I got angry enough that I was

06:21

like, I’ll be damned if I’m going to die this way. And I’ll be damned if I’m going to get

06:25

buried a girl. And you know, and so I chose to be here in

06:29

the process of… of gender transition. I had a great therapist who kind of kept reminding

06:33

me that that was on the table, even when I ran from it. And in 2002, I started testosterone.

06:41

And as I started to transition and testosterone took its effect and I started to look like

06:45

myself and the world started to not be so difficult for me to navigate, there became

06:51

these places of ease. And in those places of ease, there became a lot of sadness and

06:57

a lot of poignancy. You know, there was joy and at the same time I was fully aware of

07:02

everything I had lost. Phil: You see two sort of examples of people

07:10

that have gone to medical professionals and have been let down in some ways. I mean, Teo

07:16

was let down by, first of all, going to the public health department to ask for testing,

07:22

knowing something was wrong. I mean, someone knows their body knows, knowing something

07:25

was wrong and they turned him away and then he had to come back and demand a test. It

07:30

was, like, ridiculous. Also with, with Doug and Robert, you know,

07:34

you see a situation where the doctor’s judgment of their relationship took precedence over

07:41

providing care. It’s like, what is this? You know, I’ve had situations myself where

07:45

I’ve gone to the doctor with my now ex-wife. She had some medical conditions and I remember

07:50

walking into the doctor’s office and, you know, I was like, I want to be in the room

07:54

with you. Let’s go in. And there was this one woman who started doing the intake, who

07:58

was just not into me. She was just like not having any of me.

08:02

And my thing is like, I don’t care how you feel about me. Like, you put your focus on

08:06

my wife right now and make sure she’s getting what she needs. And it’s just like this situation

08:10

of like now I… now, so I’m walking out of this room. Is she going to be, like, making

08:15

sure that she gives the care she needs to my partner and not be, you know, having some

08:21

sort of issue with the fact that she knows we’re partners. It’s just ridiculous. It’s

08:24

like we shouldn’t have to leave it up to chance like this at all.

08:27

Absolutely not. And it also made me think about one of the reasons why I wanted to get

08:30

married was not because I wanted to have, like, a big, nice ceremony and have this romantic

08:36

gesture. But also because you want to just be able to ensure that you have that legal

08:40

piece, that access to someone. This is kind of one of the ways that we seen these issues

08:45

in our daily lives. Have there been other people that you’ve seen who have impacted

08:49

your point of view on this that you’ve learned from anybody in the media or even like pop

08:53

culture representations? I often think of Magic Johnson. And quite

08:57

often when I think about HIV, I remember when Magic Johnson came out because it was this

09:01

whole thing of like, okay, so here’s this Black heterosexual man who has HIV and I’m

09:07

not even sure what the circumstances are around with how he caught HIV or how that happened,

09:12

but it was such a different view of someone experiencing it from what I was used to hearing.

09:18

Because at the time I was so used to hearing gay a gay man having HIV or gay men contracting

09:23

HIV. And now there was this like super mega, like, heterosexual man who is a basketball

09:29

star, who’s well known. Yeah. It was so interesting when he caught it because I just… I felt

09:32

like people then had to have a different conversation around it. So, you know, with Magic Johnson,

09:36

it was really different because it was just so… it was something we hadn’t seen before.

09:40

Yeah, absolutely. And it just also makes me think that, like, I feel like a lot of the

09:45

coverage that I remember for Magic Johnson is that this was the thing that then led about

09:49

him for a really long time. Like, one of the things we talked about earlier was people

09:53

being able to be their whole person and having, you know, because of, like, the stigma around

09:58

this and the media, having this be like the thing that… that was really focused on.

10:02

One thing that that made me think about is some of the early representations of HIV and

10:07

AIDS that I saw in the media growing up. Like I remember, as a child of the nineties, seeing

10:13

– You’re dating yourself now.

10:14

Little bit, little bit. One of the first ways that I was introduced to it was through the

10:19

movie Philadelphia with Tom Hanks. Did you ever see this movie? Also through the musical

10:24

Rent? I can remember being, like, 11 years old and all of my classmates, like, singing

10:29

the Rent soundtrack, having clearly no idea what it had to do with.

10:35

But I… but I almost remember there being like this genre of representation of HIV/AIDS

10:41

that was very much focused on the trauma and pain and suffering of it all. And just how

10:47

I feel like, so fortunate to live in a time when now there are more stories and representations

10:54

and people out there talking about their experiences, and that we have evolved from that very one

10:59

dimensional portrayal to something much more. So true. So true. So, you know, I’d like to

11:05

share a personal story. I had a friend in the eighties, as I was in high school – and

11:10

now I’ve dated myself, so great – that died of AIDS. He was a friend of mine. He was a

11:16

classmate of mine and we were pretty good friends. And I remember going to the hospital

11:21

and seeing him. I remember, you know, a bunch of us going and going to the hospital, just

11:24

really watching him waste away. It was really -it was just so bizarre to see

11:29

someone, my age to be experiencing this level of pain and just losing their life. And I

11:35

just, I remember thinking to myself, like, I just, this is so bizarre. Like, I don’t

11:39

understand this. And you know, I think back and I don’t think I was equipped at the time

11:44

to really let it sink in what it was, but, you know, to have gone through the experience

11:50

with him and to be with him even in the last days, it was really something that I’ll never

11:56

forget. I wonder also like what his life would have

11:58

been like, you know, at this point, like we’re talking about the earlier days of AIDS and

12:03

HIV. And so there weren’t the treatments that exist. You know, he could have lived a much

12:08

longer life, but it was, was at that time, just a death sentence and you were just waiting

12:12

for someone to die. And it was just a matter of, like, holding space and being there with

12:16

that person and holding their hand and being, you know, letting them know as they’re slipping

12:22

away that you’re in – you’re in it with them. You know, for as long as you can be,

12:26

Thank you for sharing. And that sounds like such an emotionally difficult experience to

12:29

have to navigate. One of the things that you kinda got into

12:32

is like the evolution of things have changed from the 1980s until now. I mean, talk to

12:39

me a little bit more about some of the ways that you’ve seen it evolve. Like, we’re in

12:43

New York city. We are also living in the LGBTQ+ community. One thing I wonder is how do you

12:51

think that other people are thinking about this?

12:53

I think one thing that I’ve learned in terms of my response to people who talk about living

12:59

with HIV, or when I talk to friends who are on PrEP, like not to project my own stuff

13:04

on them, not to have an overly emotional reaction, that kind of thing, like, I feel like that’s

13:09

a big thing that I’ve learned. I’ll say that within our community, I feel

13:13

like there’s still so much addressing it in a head on way that I don’t seem to see outside

13:19

of our community. So when you think about HIV and AIDS, it’s really, you know, initially

13:24

it was called like gay men’s cancer. The truth of the matter is there is a huge population

13:29

of people in who are not gay, who have HIV. There there’s HIV in many parts of the world

13:34

that have nothing to do with people who are queer, gay, or identify as anything under

13:40

our umbrella. I think that sometimes it’s like that just gets forgotten. It just seems

13:44

like that just, I mean, where is the discussion about that? Where’re discussions about,

13:49

you know, heterosexual people who are HIV positive? I don’t see much of that. I mean,

13:53

I know it exists, but it’s still seems so hidden. And I think within our community,

13:56

it gets addressed quite a bit. Yeah, and we… we see it, but I don’t… I don’t know about

14:01

it outside. And there’s so much more to this disease than it just being something that’s

14:05

under our umbrella. I feel like it’s one of those things where

14:08

if you are in a population or community that is not directly impacted by it, it is easy

14:14

for you to silo yourself off and not have to engage with this particular issue and how

14:18

it impacts people. Or if you don’t know people who are personally impacted, it’s easy for

14:22

you to turn the other way and not engage with it at all.

14:27

In Teo’s video, he mentioned this the “and” a lot of times, and I’ve really also loved

14:33

that phrase… sort of the “and,” which is the living with – with having this diagnosis,

14:38

knowing that it’s something that can take his life, but also this whole idea of like

14:42

this identity that fits him, that makes him feel like himself.

14:45

I feel like it’s such a larger sort of lesson in general. Like, it’s sometimes we can tend

14:52

to get into these modes where it’s like at that moment, it’s – sometimes it’s… it could

14:56

seem like that’s all you are. There’s so much more to who you are. So I love this idea of

15:02

talking about the “and” – the being able to exist with these complex sort of emotions,

15:07

all in one place, as one person and realizing all of it can exist at the same time.

15:12

It actually made me think about a story that I covered last year about this guy named Nick

15:17

Harrison, who is living with HIV. He’s actually – he’s in the military and he received an

15:22

order to essentially ;eave the military because they instituted this policy that was being

15:28

called “Deploy or get out,” which was anyone who was essentially living with HIV

15:33

and non-deployable had to get out of the military in a certain amount of time.

15:36

One of the big things that we discussed over the course of that story was how, because

15:40

of the medication you can access today, how he had an undetectable viral load, and part

15:46

of his fight to be able to stay in the military and do the work that he felt called to do

15:50

was that having that undetectable viral load, medical experts said there was absolutely

15:55

no reason why he should face that kind of discrimination.

15:59

And one thing that was really interesting to see in response to that story and to the

16:04

conversation about being undetectable, and that means U=U, undetectable means it’s untransmissable.

16:10

When I shared this story, so many people had no idea what undetectable meant and it felt

16:18

like something that was being really discussed in spaces with gay men, where, you know, “undetectable”

16:25

is a word that people understand what it means. And then it just really was eye opening to

16:29

me that so few people outside of that seem to know what that means or that that even

16:35

existed. Wow. That is kind of blowing my mind

16:38

That story and where this connects for me is again, to this point that HIV discrimination

16:44

is very, very real. And I think, like, when I think of the direction that I would like

16:49

to see all of this go in, in addition to changing the attitudes and stigma around it, but I

16:54

think it would be really great if there were a larger recognition of HIV discrimination

16:58

and actual protections for individuals so that you might not lose your job because you’re

17:04

living with HIV. We’re still not there. You know, there’s still

17:07

much work that has to be done in this regard, I think.

17:10

You know, also like access to PrEP, access to medication, access to the healthcare resources,

17:15

access to healthcare providers who have been trained to have the competence to deal with

17:20

these issues and deal with communities that are disproportionately impacted by HIV and

17:25

AIDS. Definitely. You know, one of the things that

17:27

– you mentioned PrEP and I think that we should talk a little bit about PrEP, and I think

17:31

one thing I definitely love about the idea of PrEP is that it does seem to, like, I won’t

17:36

say it erases, but it actually sort of destabilizes sort of the barrier that has been placed around,

17:41

you know, sort of the buckets, the sand boxes that… that people get placed in, if you’re

17:46

in one or the other. And I feel like the idea of having something like PrEP sort of like

17:51

destabilizes that a little bit and it doesn’t remove it, but it does make it so that there’s

17:56

less of this “othering’ of people who are HIV+.

17:59

One thing definitely that I’ve noticed is that because I have friends who are on PrEP,

18:04

it means that actually I am having way more conversations about HIV with them than I feel

18:10

like maybe I would be having otherwise. Or I definitely, I feel like, yeah, in spaces

18:14

where I’m with queer women, like a lot of times I don’t hear as many conversations happening

18:19

around HIV in particular. And then for the gay men that I’m friends with who are on prep

18:24

or other individuals who are on PrEP, like I feel like it just somehow normalizes the

18:28

conversations that were happening. ‘Cause they’re just, we’re just, like, talking about

18:31

PrEP and how they’re on it. Or, you know, they mentioned that they had an appointment

18:35

to take some test or something like that. I think the takeaway here isn’t that this

18:44

has changed. I mean, the world has changed. Some areas have changed. But I can guarantee

18:50

you any place that allows choices by individuals that aren’t following some sort of protocol

18:56

like Kim Davis, there’s a lot of situations where individuals wield a lot of power. And

19:00

if those individuals are willing to abuse their power for whatever the reason, it can

19:05

seriously impact your health. You know, when you’re alone in a room with a doctor or a

19:09

nurse practitioner, if that nurse practitioner doesn’t like something about you and also

19:16

doesn’t take her medical license seriously enough to actually treat you rather than judge

19:21

you. I’m sure that happens every day, all over America. Still happening in New York.

19:26

I bet. But less, or at least less for gays. I’ll guarantee it’s happening a lot to someone.

19:32

And I was able to, I think, figure some way to live with that both “and” you know?

19:38

In the same way that my… my experience of living with AIDS has been that I get to figure

19:45

out how to have a future and understand that I may not live to see it. Like, I’m not one

19:49

of those people living with HIV who’s like, I’m gonna be fine. Like, I’m gonna… I’m

19:52

going to survive this. And I’m not one of those people living with HIV who’s lived with

19:57

this. It’s hope- it’s hopeless. It’s useless.

20:00

Like, I have figured out some spiritual way to live with both “and”, that the two

20:04

competing things can be true at the same time. And that was true, I think, with… wigh my

20:09

gender experience of sort of walking out the door and being like Now, finally I get it

20:14

to be me. You know, when we were talking about PrEP,

20:17

I’m talking about also like some of the medications right now that can lower someone’s viral load

20:22

to a point where it is undetectable. And while all of that is good, I think that the scary

20:27

thing about it is that because there are things like PrEP and PeP and things like that, and

20:33

also some of the treatments for people who are positive, there’s always this concern

20:38

and that now people are going to get a little more lax in terms of being, you know, sexually

20:42

safe. I feel like that’s the one thing that is worrisome

20:45

because it’s like, just because we have some of these things and we’ve come so far doesn’t

20:49

mean that sexual safety is not a thing and that’s not something we have to be concerned

20:53

about. So there is this concern that because now we have PrEP or we have ways of treating

20:59

people that can really, really control the viral load, that people are not going to be

21:04

as safe. So there are two people in particular, who

21:08

I want to mention who is a journalist. I just learned a lot from their work. Robert Levithan.

21:12

He passed away a couple of years ago of cancer. He had AIDS as well, and he founded a group

21:16

called The HEaling Cirle and had done a lot of work with Gay Men’s Health Crisis in the

21:19

1980s. In addition to being such a lovely person who really left an impact on me and

21:25

taught me how to be more compassionate and also put aside my presumptions and projections.

21:30

And then somebody else who I highly recommend following on social media is Alexandra Billings.

21:35

You may recognize her from Transparent, but she does a lot of Instagram videos talking

21:40

about what it’s been like for her living with AIDS for decades.

21:43

And I was just going to say, I would be absolutely remiss not to mention Larry Kramer, an activist

21:49

and playwright who recently passed away, who was incredibly vocal about this issue, who

21:54

was one of the founders of the group Act Up and also Gay Men’s Health Crisis. And he is

21:59

a voice that has incited a lot of opinions within this space. But I think, especially

22:04

in terms of this moment, just thinking about him, reminds me that rage and anger and putting

22:10

aside the need to be liked and come off cause respectable, how those are so central to this

22:17

fight and to all the kinds of issues and work that we care about.

22:29

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

22:33

And Alex Berg, and is produced by Anddy Egan-Thorpe. The Podcast is recorded as part of I’m From

22:38

Driftwood, a worldwide nonprofit, LGBTQIA+ story archive and is funded in part from the

22:45

TD Bank and Heritage of Pride New York. I’m From Driftwood was created by Nathan Manske

22:50

to help queer and trans people learn more about their community, help straight people

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learn more about their neighbors and help everyone learn more about themselves all through

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the power of storytelling. The IFD program director is Damien Mittlefehldt. The stories

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23:08

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23:17

Thanks y’all for listening.

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